PGP / SPD My story:

SPD AWARENESS DAY

2012-02-03T11:34:00.002Z

Well, on a very much used Social Networking Site starting with 'face' and ending with 'book', we had yet another of our SPD AWARENESS DAYS!

For those that are not aware:

SPD AWARENESS DAY was set up by charity Support Pelvic Dysfunction and this blog, to be every FEBRUARY the 1st. (WHY THIS DAY? because that's the day we thought about this fantastic awareness idea that would help many SPD victims find us!)

Every FEB 1st people on this networking site set their status to say something along the lines of:

"Well it's another SPD awareness day started by Support Pelvic Dysfunction! Please REPOST this as 1 in 3 women develop SPD, approx 20% become disabled with SPD or develop long term SPD. Help is available at www.supportpelvicdysfunction.co.uk Let's raise some awareness today! HAPPY SPD AWARENESS DAY! ♥"

Then people who WANT to help click SHARE and post it to their wall or set it as a status.

This year it was also shared on another networking site as a 'tweet'.

We would like to thank everyone who has helped with this awareness as part of our ongoing awareness campaign and would also like to achieve more sharing next year!

There are many SPD victims that may not know of SPD, may not know they have SPD, or whatever their circumstances may be suffering alone and thanks to idea's like this, these people can find out about the charity and get the help they need and deserve!

We appreciate all who were involved and fingers crossed for next year!!!

RE: PREVIOUS post regarding disabled being non-equal citizens:

2012-01-01T19:47:00.000Z

In response to the post i made previously in regards to how disabled people ARE NOT equal citizens unfortunately, i have taken action today and put my thoughts accross to my county council.

ALL details and names have been removed to protect identities and to follow the rules of the blog that i established based on morals, but the opinions i have and how i have put them accross has been kept as i said it.

Please read on and i will update you in regards to what reply i get, still following legal guidelines and protecting identities.

REMEMBER:
PLEASE SEE PREVIOUS BLOG POST AND SIGN THE E-PETITION TO NUMBER 10 DOWNING STREET TO CHANGE CARERS ALLOWANCE TO A HIGHER AND MORE DESERVING AMOUNT! TAKES NO TIME AT ALL TO SIGN IT!

Complaint below:

"HIGH PRIORITY: DISABILITY NEEDS COMPLAINT AND SUGGESTIONS

PRIVATE AND CONFIDENTIAL

To whom it may concern,

I would like to put forward a formal complaint and suggestions regarding disabled tenants.

At this moment in time, disabled tenants are not being helped to the extent that other councils are helping disabled individuals:

Let me explain further, I am a disabled mother of one (toddler/child) and i live with him and my husband who is my 24/7 registered carer.
I have a carelink system installed and it cost me over £120 to get a landline when we are on low income and were deemed homeless when offered this house, needed food hampers from local rotary club! Were made homeless due to disability circumstances, from a private rented accomodation and i had to close a business i had ran.

As i was waiting for DLA which was backdated to before i moved into this property, there was a flaw in systems we fell into and could not apply for any disabled property despite being disabled and homeless because we had not at that time been 'labelled' disabled by the DLA or county council.

We were also told there would be no bungalows suitable which lead us to this property, and then a meeting regarding bungalows.

We would have lived in this property our whole lives if it had have been suitable for us. We did try and make it suitable as we were discovering my needs due to the disability.

I run a charity and i help prevent further disabilities with this charity, it is for my secondary disability which is SPD. SPD is symphysis pubis dysfunction and is a gap in the pelvis that affects walking, mobility and causes severe chronic pain. It can become a permanent disability if left untreated and if other underlying conditions exist.

1 in 3 pregnant women develop spd and if left untreated in an able bodied person, it can last over two years. Source: ACPWH medical professionals.

My main disability is a joint disability/connective tissue disorder known as hypermobility syndrome, a subtype of ehlers danlos syndrome, in which leaves me very swollen and unable to move at all at times.

At this moment in time there are no suitable bungalows, as most bungalows here are not suitable for disabled people, but are suitable for elderly people (who in all honesty can do much more than i can).

They are labelled over 60's only, have steps and are not suitable for families due to the small size.

Due to this we have to wait for a 3 bedroomed property to become vacant, and we would prefer a property that already has adaptations.

We were informed that we would be phoned when such properties become available and can view them, as they need to be offered to disabled tenants who can use the adaptations first, thus saving the taxpayer and council money.
Against the information we were given we have also been informed that at this time they are entered onto bidding systems and when able bodied people win the property they remove the adaptations only to have another family move in at a different time who has to wait OVER A YEAR for ANY adaptations including ramps (if needed). Therefore us disabled individuals have no access to and from our properties for a year or longer, as the minimum is a year!

Furthermore, for able bodied people, health and safety requires two fire exits, disabled people are only allowed one ramp and therefore are deemed less important than able bodied people and at more risk being vulnerable and unable to exit a house if a fire is in situ at the ramped area. I was scolded by a male individual who works for the council because i had two ramps, first in which was put in situ and paid for by social services. BOTH ramps are important AND needed especially when ambulances have to come for me and cannot exit because this is a small house and my wheelchair is folded in the hallway - the only place we can put it.

OR if for one reason or another something makes it difficult for me to exit one side, i can exit the other, but the point of the matter is, why are disabled people not deemed equal to able bodied people and allowed TWO fire exits, that they would have had anyway had they have been able bodied?

Wheelchair users face many restrictions in life, and i did not think the council would add an additional restriction which does in fact deem them less equal to able bodied people. ALL we want to do is live as NORMAL of a life as possible and councils are supposed to assist us with the help we need from them to be able to do so.

For example, if for some unforeseen reason i was stuck in the house with my son and i needed to exit that house, i would have to do so in a wheelchair with my son alongside me or on my knee, if there is a ramp then i can easily exit during a fire, if there is no ramp at the exit i cannot save myself or my son as my son is too young to leave me.

This is not fair for people deemed as vulnerable tenants. Neither of my ramps are permanent yet the gentleman who scolded me regarding them stated i could not take them to the house i move to if they fitted, which again costs councils more money, and thankfully the social services have stated they allow me to take theirs if it is suitable because they know the extent of stress and trauma we have endured because of the disability i have. My disability is genetic and i have had it since born, but it became severe during pregnancy and my mobility will never return.

Furthermore the houses with adaptations are placed on the bidding system, and i am informed the details should state whether there are adaptations or not, but there is no symbol or visable icon to label it as a disabled property, and able bodied people are able to bid on this property, and if disabled tenants are ill and have not been able to check the system they will not be informed this house is indeed available which means that able bodied people can bid and win this house and usually the adaptations are removed.

Would it not be easier to label properties as such with disabled icons and offer them to people bidding on medical grounds? Thus making them easier to find if nothing else?Colour coding like mutual exchange perhaps?

Or do what other councils do and as we were originally promised, phone disabled people up who are most suitable for the house for a viewing. Because it is NOT A PRIVILEGE to be disabled, we are in fact LESS abled to do things as abled bodied people and therefore NEED such properties MORE than able bodied people, which again recycles the adaptations for people who can use them, saving money where adaptations would have needed to have been removed and again installed somewhere else.
There was a local bungalow free nearby and i never got offered it or was allowed to view it nor did i see it on the bidding system because it took a while for me to be put on, and although i am on for 3 bedroomed properties, i should still also be allowed to view bungalows that are 3 bed incase one came available.

I am seeking a flat entrance and exit to property and a downstairs toilet, I need a downstairs toilet, this will make my life easier but could also take longer to find.

The reason i am seeking this flat grounded entrance and exit is so i don't have to deal with being given only one fire exit as opposed to two because i find that HIGHLY OFFENSIVE AND DEHUMANISING AS WELL AS DISCRIMINATORY TOWARDS DISABLED PEOPLE, so when i move in and it takes a year or 17months we waited last time, to have the adaptations I NEED fitted, i can infact live downstairs meanwhile, and something close to my immediate family for extra help and assistance would be preferred as otherwise how will i wash? I also need a bath as pain relief, and a wide bath that will fit the bath lifts and a stair lift for access upstairs.

There is currently a house suitable in (place here) that has recently become vacant, it is on the same row as my parents live which they are at (place here), but i dont know if it has a stair lift and i keep looking on the bidding system only to find that there are no suitable properties as there are none in (place here) at this time, and the only 3 bed properties on there are mutual exchange and no one would exchange for the property we live in as previous tenants left it in poor repair, and we would prefer this house go to someone who can benefit from the adaptations already in situ.

I feel disabled people are being forgot about and put last, and no one as of yet has been able to give me a clear answer regarding what system is in place to assist disabled people right now, some think i can be phoned, others think i won't be phoned and if my house goes to able bodied people because theyre in a higher category than us, then i have to deal with it and wait for another.
But this system, whatever is in place right now, is not helping disabled people and it is costing the council more money!!

I hear about disabled rights lectures the council holds for staff and i would love to attend one to see what they are saying they are doing and comment on my situation confirming what is actually being done, which is very little in very long periods of time.

A year is far too long for any disabled individual to have to wait for life necessities!! I can in fact confirm that disabled peoples health and wellbeing are being seriously affected by this wait, for one we get low on vitamin D being housebound when we should be able to access outdoors, and this affects our bone and immunity. Why should we have to be imprisoned in our homes for a whole year because we are disabled and cannot work and therefore pay for the adaptations we need?

Surely the council would have suitable accomodation for us to wait until the adaptations are done, or perhaps do the work prior to moving in, labelling the work equal to electricity and wiring and gas and electric works? Why is it not equal to those as it is just as important? Again i feel we are deemed less important and less equal to able bodied people which can be defined in law as discrimination. I have studied some law and psychology to degree level.

The maximum i feel should be 3 months and even thats a prison sentence when your disabled / mobility impaired and needing ramps.

I feel we are therefore being punished and penalised because we have these needs, when we should be given support, and guidance and a straight answer when it comes to what help we are entitled to and what help and support the council can offer.

In other ways the council HAS been helpful. I had a home visit, forms were filled in, but the bidding system went up the same day i phoned, having waited over 1 month, so surely it could have gone up sooner, and when we were assigned one on one support we have not been listened to, our needs were changed by opinions after the meeting, and i therefore had to re-confirm the needs we have, as they had got things wrong.

Currently my husband and i do not sleep together regularly, because of my condition, when he moves or gets in or out of the bed it hurts my joints and pelvis.

We have never kept this fact from anyone, and often my husband sleeps downstairs, but when we are re-assigned a more suitable home, we will be able to live much easier as i need 24/7 care and he has to keep coming to check on me from downstairs and help me during the night, he does not get much sleep, and he has NEVER had a day off! NOT once!

We are meeting with social services to see what help and assistance they can give us so my husband can take one day atleast, a year, off from 24/7 care.

We are also on low income otherwise we would purchase our own adaptations, so unfortunately we have to rely on council to help us. I wish i could work, i worked more than one job since i was 15 years old and studied!!! I never had a social life because work was important and i miss it and i run this charity as and when i can, answering emails at this point in time, and when we have an additional trustee they can take over most duties that will occur.

I get DLA, (benefits outlined here), and my husband who works 24/7 as my carer and my sons main point of care (mobility wise) he gets carers allowance, which is £500 to £890 less a month than he would get working as a carer under employment terms, working 9-5 each day! Which is a HUGE difference.

We do get council tax and housing benefit but we never see that money as they cancel each other out. I am talking about the money we have available to spend on food and groceries as well as clothing and supplies for our son.

Right now were trying to get a motability car.

As you can see we fight obstacles left right and centre.

What i am asking for is information in regards to what system is in place right now, what help is available right now, for disabled people. And if it is how it is outlined above and how i have been informed, i feel this needs to be reviewed and i will seek the opinions of other disabled residents in the area along with help and support from local disability organisations and charities.

I would also like to know if there is any moving support, or decorating help for people in our circumstances. Or organisations we can be referred to with exception to the local home supply charity that does house clearance and sells carpets etc as they have been no help to us whatsoever.

I am not asking for us to be priviliged, or be given luxuries, just the BASIC essentials we need as disabled tenants, and that should have already been put in situ.

I am still disgusted and upset at the scolding i got regarding the two ramps, and the stories he told of other disabled tenants getting on his nerves by occupying houses unsuitable for them and then reporting they cannot get out as theres no ramp etc.

We do not like to complain, we have enough conflicts in our life as well as abuse towards our disabilities, discrimination and insults, we don't want to have any additional conflict, we just want to be able to live as normal a life as possible and this should already be allowed and the basic essentials a wheelchair user DESERVES and NEEDS to make them EQUAL to an able bodied person , are TWO RAMPS/TWO FIRE EXITS, STAIR LIFT IF STAIRS, SUITABLE BATHING FACILITIES AND ACCESS TO TOILETS UPSTAIRS AND DOWN, OR A BUNGALOW THAT MEETS THE NEEDS OF A FAMILY OF 3! WITH 3 BEDROOMS.

I am not asking for a lift to be put in like other councils offer as well as other disabled charities that cover (place here) area, just a stairlift. If a lift was put in it would mean i would have wheelchair access to the full house which would be a benefit for me to live more of a normal life, but a stair lift although not offering access in my wheelchair, will still help me to gain access upstairs. If my mobility worsens permanently in future then a lift would be the only option, but my point is that i am happy to accept the basics, not the luxuries.

These should be defined as the basic needs of a mobility impaired disabled individual just the same as the basic needs of an able bodied person is two fire exits, toilet, bathing facilities as defined by the human rights act.

Not much different but it would be a HUGE help.

I am keeping a copy of this complaint for future reference purposes and or legal purposes and i would like a reply within 14 days of receiving and reading this complaint.

This is a formal complaint from a vulnerable and concerned disabled tenant.

Thank you dearly for your time, and i hope i am able to receive some support and help regarding housing as a result of this.

Kind Regards,
(Name here and family names here)
(phone number here)

(email here)
(mobile number here)"

REMEMBER:
PLEASE SEE PREVIOUS BLOG POST AND SIGN THE E-PETITION TO NUMBER 10 DOWNING STREET TO CHANGE CARERS ALLOWANCE TO A HIGHER AND MORE DESERVING AMOUNT! TAKES NO TIME AT ALL TO SIGN IT!

PLEASE HELP CARERS GET THE HELP THEY SHOULD HAVE HAD: (TAKES LESS THAN A MINUTE)

2011-12-01T01:38:00.001Z

PLEASE SUPPORT ALL SPD SUFFERERS PARTNERS THAT BECOME 24/7 CARERS! PLEASE TAKE 2 SECONDS TO SIGN THIS PETITION AND VERIFY YOUR SIGN UP BY CLICKING THE LINK THATS SENT TO YOUR EMAIL!

PLEASE REPOST THIS ON YOUR YOUR SOCIAL NETWORKING SITES AND RAISE AWARENESS!

AND DON'T FORGET TO SIGN THIS IMPORTANT PETITION, THIS WILL HELP FAMILIES LIKE MINE GET WHAT WE DESERVE!!! http://epetitions.direct.gov.uk/petitions/20542 The Government should increase Carers Allowance to reflect the amount that carers save the nation by not relying on the NHS

CARERS ALLOWANCE IS CURRENTLY AROUND ONLY £55 A FORTNIGHT FOR A CARER WHO WORKS 24/7 WITHOUT ANY BREAKS BECAUSE THEY CARE FOR A RELATIVE LIKE MY HUSBAND DOES. CARERS THAT WORK 9-5 AND NIGHTSHIFTS FOR NON-RELATIVES GET £800-£1000 A MONTH!!! (ANNUAL SALARIES FROM £12K-£15K AND UP!)

HUGE DIFFERENCE FROM £110 THE CARERS ALLOWANCE GIVES!!!

PLEASE TAKE 2 SECONDS TO SIGN THIS WITH YOUR NAME, EMAIL AND ADDRESS!!!! AND REMEMBER TO LOGIN TO YOUR EMAIL AND CLICK THE CONFIRMATION LINK TO VALIDATE YOUR SIGN UP!!

THANK YOU SOOOO MUCH!

THIS IS SOMETHING I HAVE BEEN TRYING TO RAISE AWARENESS OF FOR YEARS!

Still seeking 3rd Trustee! ITS NOT TOO LATE TO APPLY!:

2011-11-28T15:51:00.000Z

Applicants for volunteer and trustee positions:

Please send the following questions filled out to:
help@supportpelvicdysfunction.co.uk

Please note: We have additional meetings with cavos but at this time they are not mandatory for trustees. (trustees may be welcome to come along to some of them, or all at a later date).

Required information via email or post.
POST: Please request corresponding postal address by calling 07721656764 on Mondays OR Fridays, 11am-4pm.
Suggestive advice line open from 10am-5pm on same days.

(The following information is mandatory whether the applicant is known by us or not.)

*If question is starred, it is mandatory.
(If you do not have a landline, please state in answer so question has been answered, however you must have atleast one mobile or telephone number you can put down so we can contact you.)

*Full name:

*Marital Status:

*Date of birth:

*Address and postcode incl town and county:

Phone numbers:

*Landline:

Mobile:

*Do you have SPD?

*(only if answered yes to previous question)
When did it occur, date occured mm/yy and if pregnant please state in weeks.

*Other conditions:

*All aids you use: e.g crutches...

*How many children do you have?

*Which child (if during pregnancy) did you develop SPD?

*What interest do you have in the charity your applying for?

*What, in your own words, does this charity do?

*Why do you want to be a volunteer or trustee for support pelvic dysfunction?

Email address:

*Do you work?

*If you work how many hours a week?

*What qualifications do you have?

*What work experience do you have?

*Have you completed any 1st aid courses, if so when, where and what was issued?

*Have you completed the workbook for Vulnerable adults, if so when and where?

*(This question only for trustee applicants)
Can you attend 3 mandatory meetings a year?

*What other time (excluding meetings) can you offer the charity?

Volunteers will be welcome to join in meetings if they wish at a later date.

3 meetings a year is mandatory for all trustees, however there may be additional meetings called to discuss important matters as they arise.

This is a start up charity, but will at all times be professionally run.

Thank you for your application and interest.

This is information needed from all people interested in volunteering or becoming a trustee.

Kind Regards,

(on behalf of)

Support Pelvic Dysfunction
help@supportpelvicdysfunction.co.uk

DISABLED ARE NOT EQUAL CITIZENS:

2011-11-28T13:38:00.027Z

WE ARE NOT EQUAL TO ABLE BODIED PEOPLE, WE ARE NOT WORTH IT:

I AM MORE THAN UPSET.

How many more rights do we have to lose as disabled individuals?

COURSES AVAILABLE IN MY AREA: are FREE for people on JSA, and ESA (those worthy as they are capable to work) but NOT disabled individuals or disabled charity workers or volunteers.

WE DISABLED HAVE TO PAY, FOR A COURSE THATS JUST MIXED CRAFTS! £3/hr, but when we are not receiving much in the form of benefits and are not able to work, how do we cope? This seems a small fee but it shortly adds up for those who cannot work, cannot improve their lives or financially progress.

How do we meet other disabled people or MAKE NEW FRIENDS?

In our area there are no DISABLED coach trips or meeting groups! (And especially not wheelchair accessible for any of the groups that do exist)

I am working to set up the first SPD support group, if i ever get my own transport since there is no DISABLED TAXIS, and the only transport available is for the town only.

THE BUS COMPANIES: SAY THEY ARE AIMING TO BE DISABLED / WHEELCHAIR ACCESSIBLE BY 2013! *fingers crossed*

THE CINEMA nearest to us has 3D screens that i cannot access because they are not disabled accessible, no wheelchair ramps, stairlifts and no lifts as its a listed building. Why no ramps?

The 3rd small cinema room they state will be made 3D equivalent by 2012.

Will our whole lives be waiting for the world to catch up to the fact there are still a minority (becoming a majority especially with SPD and underlying conditions being diagnosed on a rapid basis), still a minority that cannot access their services!

Apparantly all i have been working towards, freedom, the freedom people take for granted every day, i am not allowed to have. I have been stripped of my rights as a human being completely now and they may aswell have put a plan in to shoot all disabled people in wheelchairs, coz theres nothing left for us to live for, other than our families, which we are housebound and not allowed to do anything we are capable of doing, so we have been stripped of our abilities because of disability and stripped of the rest because of NHS, COUNTY COUNCILS and now Disabled Car Depts!

I am more than gutted right now. :(

Whats the point of DVLA deeming me SAFE TO DRIVE if Disabled Car Depts wont let me? (previously told me otherwise!)

Disabled Car Depts told me before i am eligable for a grant for a WAV, 1)im disabled in wheelchair, 2)have 24/7 carer and a son. 3)On higher rates of both DLA (which i wouldn't be on if i could work or be sole parent to our son) 4)on benefits.
YET the gentleman i spoke to today says i HAVE TO BE ABLE TO WORK or BE SOLE PARENT to be able to get grant for Wheelchair Accessible Vehicle from Disabled Car Depts. So im not allowed to drive and get the free lessons i was promised (under 25yrs) because I AM DISABLED.

AS IF IT IS A CHOICE!

He says i am NOT ALLOWED THE RIGHT TO DRIVE, by saying i have to be passenger and my husband has to drive me, when they wont give him free lessons because ONLY THE RECIPIENT of DLA can get the free lessons. DESPITE DVLA DEEMING ME SAFE TO. (i have spent 6months following what they said already, not to apply until i have provisional etc etc.)

My husband does not drive because i was the one that did the lessons prior to SPD in 12weeks pregnancy! And because i cannot work due to disability and because husband is my 24/7 carer we have no money to afford lessons. It's true!

ITS A PARADOX NOW.

HE NEVER SAID CRITERIA HAS CHANGED BUT IT HAS BLOODY CHANGED IF THESE ARE THE RULES NOW!

Dr. and DLA made us homeless at 35wks pregnant, its no secret!

When were disabled people 5th class citizens or lower? Were they ever equal to 1st?

SO WE CANNOT GET A CAR THATS SUITABLE FOR ME, YET THEYLL LET ME GET A Disabled Car Depts CAR I CANNOT DRIVE AND WASTE MONEY?!?!

ITS NOT ME WHO PUTS THE PRICES UP FROM £600 TO £30,000 JUST BECAUSE ITS WHEELCHAIR ACCESSIBLE!!! THATS PENALISING US! WHY HASN'T ANYONE DONE A STORY ON THIS?

(SAME AS TAXI'S, ITS £3.20 FOR A ABLE BODIED PERSON, MAKE THAT £14 FOR DISABLED-IF YOU EVEN HAVE DISABLED TAXIS AVAILABLE IN THE AREA!)

OTHER LOSS OF RIGHTS:
What's the point of council giving us 1 fire exit instead of 2 (WE ARE NOT ALLOWED 2 RAMPS, ONLY 1 BECAUSE WE ARE NOT THE SAME AS ABLE BODIED PEOPLE AND WE WON'T BE MISSED IF WE CANNOT ESCAPE, IF THERE IS A FIRE AT OUR ONLY EXIT) and wait 12 months for adaptations. (SUFFER FOR 12MONTHS WITHOUT ACCESS IN OR OUT HOUSE, UPSTAIRS, NO ACCESS TO LOO OR BATHROOM)

THIS IS THE 2011 TRUTH FOR THE DISABLED behind the scenes, whilst THEY PRETEND publicly to be an investor in people and help people. REALLY THEY ARE stripping us of our rights and making us suffer for 12 months without access to basic human rights like toilet, bathroom, upstairs just because THEY DONT HAVE a suitable bungalow.

WHEN DID WE LET THEM TREAT US LIKE THIS?

When did we let them make us live like this? Who will stand up now and say the truth if no one else will? i will. I have lost everything else and its not just me that suffers, its my husband and son. Do they deserve this too?

NHS: Treat us like scum when we have not been diagnosed, treat us like psychiatric patients just because we have an invisible condition, that they choose NOT TO TEST FOR and INSTEAD treat us with abuse, malpractice and lies on our notes.

And who are WE to take on a council? The NHS? The Disabled Car Depts? The GOVT.?

HOW can we?

We have been left with nothing but a lot of traumatic stories, experiences people pretend they already know about because they don't want to think about them?!

That people don't want to know because as long as they do not go through it they are OK. And when they do go through it are HELPLESS to do anything, because the LAW doesn't protect disabled people over the age of 18years, there is no legislation in place to protect us. Just a workbook known as no secrets workbook.

ALL THESE LIES ABOUT DISABILITY DISCRIMINATARY ACT, WE CANNOT AFFORD TO TAKE ANY OF THEM TO COURT UNDER THAT ACT OR OTHERWISE!

3K MINIMUM! Did people even know that?

THEY HAVE LEFT US NOTHING TO LIVE FOR!

BECAUSE THEY ARE NOT GIVING US ANYTHING BECAUSE WE CANNOT WORK, BECAUSE ARE IN A WHEELCHAIR, DESPITE WORKING AND BEING IN FULL TIME EDUCATION FOR MOST OF MY LIFE!

ONLY THIS IS NOT JUST MY LIFE! ITS THE LIVES OF MANY!

WHEN WILL THIS STOP? WHEN WILL THIS CHANGE?

I can only see it getting worse from here.... slippery slope system to dispose of those who cannot contribute to society just like the nurses pushing women to KILL their babies if there is a risk of them being DISABLED!!!

WE ARE PEOPLE, NOT TERMITES!

Disabled Car Depts: Cannot give actual name due to being a respectable blogger. All names, places and identities are kept confidential.

PLEASE NOTE: Disabled Car Depts have decided i may still be eligable because i do the charity work that i do. So there may be hope for me still.

However it is still really sad that others are still suffering and there are SO MANY situations we are less than second best! Less than fifth best!

We should be able to get more help than this!

Living with SPD and HMS. SURVIVING ABUSIVE DR'S!

2011-11-19T12:18:00.004Z

I know that living with SPD is difficult enough, but mix that with a joint condition and it is a whole new ball game.

But, that does not mean that you cannot get the help you deserve. http://www.hypermobility.org/ are a HMS Charity that has guided me through some of the tough times with HMS.

If you become a member like i have, you receive lots of important and relevant information, and if your blessed to be in an area where they meet up, in which i am not, then you can discuss things with others who are in the same situation.

I cannot update anything else as the Health Psychologist Department have not been in touch despite the fact that i was informed ONLY the Pain Psychologist Dept, have dismissed me.

I am losing faith and losing patience and i am very grateful to be able to receive counselling yet again via my GP. But this counselling is not the psychology i need to be able to accept this disability to the full.

Many women struggle accepting SPD, HMS and even if for a short temporary period of time, women need to get over what they have experienced. As i am stuck with both conditions i have to try and help myself as no one else wants to help me or put me first, which is yet another reason why i started the SPD charity Support Pelvic Dysfunction.

Women like us, should not have to go through these experiences unsupported, especially when in many cases, and in mine, we have endured malpractice and abuse from Dr's and have been labelled wrongly in the notes. As abusive, as Deluded as my ex Gynae stated. Deluded. Is there really any need for that? Well he also said that i would never be diagnosed with HMS, and he was proven wrong, why? Because HE was the one that ignored my SPD diagnosis made on 16th July 2009.

We remember this date clearly as transport took us to the wrong hospital and the lady there saw us and gave me crutches that i was not measured for.

HE ignored that and made the most disgusting assumptions that i had self referred to Social Services, i had not. A local hospital Wheelchair Dept Referral was made by a different physio and it was all dealt with through Drs and professionals.

And with all the evidence in his notes, but too lazy i can only assume to read them, he went and lied to Social Services Safeguarding childrens department to tell them i was an unfit mother, that referred myself to social services and made up the SPD claim. (ALL medical notes prove otherwise - unless the NHS professionals failed to document appointments- which i doubt, as they have to, do they not?) Despite this fact, we still had to go through an ordeal of an investigation in the FIRST few days we should have been enjoying our son at home!

Not only did this man rob me of my pregnancy, he robbed me of my 1st few days at home too, and they did not deal with my complaint legally, appropriately or with respect. I was NOT allowed a meeting with them and PALS was told to no longer get involved after i had phoned them about the abusive investigation report in response to my SERIOUS complaint.

It was not just the first few days either, the investigation took time, precious time we should have had with our son, in our new home, with no access to bathroom and toilet and sleeping in the living room with a commode. (17 months we waited for adaptations). (This is the same Gynae Dr. that refused to write to DLA and confirm what my GP and Physio had already confirmed amongst others, which lead to a delay in financial benefits which made us homeless when i was 35 weeks pregnant, not only that either, lost my business i had set up from nothing, my job for a well known and reputable Dr and Inventor, and my husbands job as a Factory Operative (Nightshifts) as he had to become my full time carer.) All this from 12 weeks as thats when i woke up one morning and just like that, i couldn't turn in bed and then the pain was unbearable from that point on. (ALL documented as it happened in this blog).

The report (reply to my complaint) stated that no nurses were present to confirm that this gynae had humiliated me by not allowing my husband to pull my underwear up from my ankles after an internal examination. This contradicts itself as nurses HAVE to be present during times as such, and there are many more flaws including the abusive language used against me.

WHY not take him to court if he was sooo bad??

Ill tell you. Because although i am trying to get over all of this ordeal, i do not wish to face this abusive man again because just seeing his face makes me feel sick, and i have verbal reports from over 50 women that claim he tells women that their baby could have died and that he saved them, which explains the only reason he could be receiving compliments and gets to stay and be an abusive Dr.

If authorities CANNOT protect you YOU MUST PROTECT YOURSELVES!

HERE IS A GUIDE I PUT TOGETHER TO PREVENT YOURSELF FROM BECOMING A VICTIM OF ABUSE FROM A MEDICAL PROFESSIONAL:

1) Always be adament that what they have to discuss about your case or you as a patient is always discussed infront of you. (my Dr mis informed staff on wards that i was able bodied and i was left falling constantly whilst heavily pregnant, left without food, with no commode facilities and left to struggle to get in and out of bed!)

2)If you feel uncomfortable about the way they are treating you or what they are saying to you, you have every right to change your Dr. Even if they protest this, you have to fight and stick to your guns!

3)I learned the hard way, SPD is AGONY during examinations, and my DR examined me EVERY TIME i saw him because it was vital for the baby to survive i was told by him. When he did so he would ask me does it hurt here, here? etc etc. And i would be honest and say yes! I was screaming in agony, no ones THAT good an actress! He would tut and say "thats not spd pain" no its coccyx pain i later found out, due to SPD.

So make sure you are NOT enduring examinations and PAIN just because your DR is skeptical!

4)Keep a log/blog or diary to make sure you have everything written in writing, although i am afraid to go to court due to their made up claims im abusive etc. and because i couldnt emotionally cope with his face, people have 3 years to take anyone to court and having things written down is VITAL, especially names and dates (if not a blog as i dont advise distributing areas or names in public blogs) Money is not important to me, my family and their health is, so i am trying to put it all behind me.

5) NEVER go alone! Take a friend, take your partner, take your mother, NEVER go alone, make sure you always have a witness! TO EVERY DR/gynae visit.

6)Make sure you are in a hospital that has an SPD policy in place, not every hospital at this time does, but you can ask at reception or Gynae reception, or ask a Midwife. You are also allowed to view this policy.

7)Ignore any DR who claims your FAT is causing problems, or that you are a hypochondriac, they are not willing to do their job and they won't make exceptions, so change them straight away!

8)If you need a wheelchair you are eligable for hospital transport, don't let any Dr have a go at you about this facility, it is there for wheelchair users (who can take their partners if they need a carer, and/or child ) if no other transports available. We have no car at this time, and although i am looking into motability car once i get my provisional, my EX Dr, Same one as mentioned in all of this, shouted at me and my husband on a busy ward, where everyone could hear, (no confidentiality at the best of times) and complained that i should not be in a wheelchair and that i should not be wasting NHS money by using transport, and instead i should pay £50 per taxi to get there. (DESPITE me not being able to get disabled accessible taxi's or afford them if they existed DUE TO (as mentioned perviously) this DR refusing to write to DLA and therefore causing us to become homeless at 35 weeks pregnant, i lost my business and my job, and my husband lost his job having to look after me)-If only he would have read the medical notes and written to DLA, and if only he had sent me to further SPD experts who would have confirmed SPD.

9)If a Physio is not prepared to help you because they believe ALL SPD goes away after birth, then you need to see a different Physio in womens health, Some do get better, but the ones who find themselves with severe pain and mobility problems may have underlying joint conditions or conditions causing SPD to stay, get the crutches and wheelchair if you need them! Ask to be referred to an OT and get your house adapted with movable and storable adaptations to get you through! Then if you do not recover you have them to continue to help you, and if you do, you can return them.

10)Make sure that you see a physio that knows about SPD and get your diagnosis, once diagnosed seek manual therapy, acupuncture and other things that help you, and more importantly seek the tests that you will need if SPD continues post birth. These tests are a STORK X-RAY (stand on one leg scan) of the pelvis and is the only one that can show up SPD as your in asymmetrical position, and rheumatologists etc for any underlying joint condition tests like HMS (HYPERMOBILITY SYNDROME), Fibromyalgia, Ehlers Danlos Syndrome, P.o.T.S and so on.

This is your 1-10 Guide, once you have your tests and everything has been diagnosed you then have concrete evidence to apply to DLA, if your refused, APPEAL straight away, this is VERY COMMON.

LAST AND FINAL IMPORTANT NOTE:
MAKE SURE YOU ARE AWARE OF WHAT YOU CAN AND CANNOT DO DURING LABOUR WHEN YOU HAVE SPD:

Best ways to recover:

1- keep your legs in a symmetrical position and make sure that they are measured so when you have pain relief you know how far they can widen prior to pain kicking in. (As once you have pain relief you wont be aware)

2-NO STIRRUPS

3-DONT REST legs on nurse or nurses shoulders.

4-NO lathatomy position.

5-No intervention if baby isnt coming out, go straight to C-section, as i have found it common that cords get tangled and you want your baby to come out safe. As well as that any interventions including forceps can worsen and lengthen your SPD.

6-Keep in a comfortable and symmetrical position at all times, even if on all fours is working for you.

7-IF you need a C-Section, make sure the surgeons know that you have SPD and that your legs need to be taped together or kept in the same symmetrical position at ALL TIMES.

8-Take your time to recover, SPD victims find it very painful to try and stand post c-section and some post birth. Plenty of rest. Take it slowly and if you need your wheelchair or crutches state so.

9-I have a birthing plan on this blog, click birthing or birthing plan on the right, this is an example and you can use it to write yours. This makes sure ALL medical staff are aware of SPD as shift changes can lead to confusion. LAMINATE it! (Birth can get messy) And bring atleast 5 copies!! Keep some in your actual notes, in the file at the bottom of the bed and keep one at your bedside table!

10- ALWAYS make sure the buzzer is within reach at all times, as nurses dont like it when you have to shout for them, even if your disabled or ill with SPD.

All of this is suggestions as i am not a medical professional however i AM a victim of HMS and SPD, and i HAVE experienced all i have declared and the evidence is provided when you follow my story on this blog.

I have studied SPD since, for 3.5 years now and I have founded a charity to try and help women and prevent the incidents, rudeness, disability discrimination, and malpractice and abuse re-occuring to more innocent victims of SPD.

SPD is NOT a condition people would WANT to fake, nor is it a GOOD thing.
Its life changing in a very negative and destructive way and ALL SPD victims HAVE to recover from their experience of having it, or accept they have it if longer term, for the sake of their child(ren) and families!

Yours Truly.

The lady behind it all.

Mrs. S.

<3

P.S. No names, places or personal information is provided at any part of this blog about any of the professionals mentioned or where they practice. This is because who they are, are not important, what is important is that people like this exist all over, and we need to be aware of people's experiences with them and how to deal with them and change things, so that you can have the best experiences possible and prevent abusive people from taking advantage or abusing you for longer periods of time. I thought i could trust this Dr. and it was devastating, but if i had seen sense and realised that he was doing what he was behind our backs INSTEAD of DEFENDING THIS DR, to my midwife and others, then we could have changed Dr's sooner and avoided HIS ABUSE!

Health Psychologists:

2011-09-21T01:58:00.001+01:00

Well after having me in the system over 3 years and missing me out, i finally got an initial assessment with one pain management health psychologist (i will call A) when the referrel was made to psychologist B.

After listening to me and seeming to want to help A stated that A would be having a meeting with B in 3-4 weeks and will be in touch afterwards.

Having previously felt suicidal and still do when i have times i feel really low or have had major problems, i discussed options with A and A stated that they have no services to help anyone who are suicidal at any time and that the person should call 999 or visit A+E when feeling suicidal.

This really hurt me as i was sent to A+E recently with PCOS -potentially- cyst pain / gynae related pains in my right side, and had been dealing with a specific dr who said he would operate when i was no longer fat. If i am honest i am not Fat, i am a little overweight but my BMI states that i only slightly obese. Anyway i lost some 2 stones and he withdrew his promise to operate via lathoroscopy.

(May not be spelt correctly, sorry)

Anyway i was in agony and on gas and air and had literally and very seriously, had enough. I told the Dr if he was unwilling to help me he needed to get a Dr who would as i need help (still do) and i still have not got the 'new' gynae Dr as i was too unwell with my joints when my appointment finally arrived 3 months later.

That same night though, having been in all day i confided in the Dr and stated i would end my life if sent home because i cannot cope with the pain anymore, it was too much and i had had that pain for a long time! The Dr did not care and said it was psychiatrists i need and because he was from the same hospital as my ex consultant i feel he has taken a leaf out of his book and got wrong information about me as he did not even know or care i had been diagnosed with Hypermobility Syndrome!!!

Psychiatrists number 1021 and 1022 arrived and said i was not their problem as they cant help as its a gynae i need as im only suicidal due to pain!

I was sent home and if not for my husband and family i would not be here today!

I have to help myself as no one else cares.

Back to Psychologists, they finally got back to me after i had left a message with B, and anyway, A phoned and stated she would like to discuss my case with C (a psychologist i had seen about something else back in 2008) and I agreed.

But i have heard nothing back and i hope they do not send me to C as it is in fact B i need to see and i have waited so long and they never stated they would need to speak to a C at all!

A stated that A and B's concerns were that they do not know how i would respond to short term help, and i said short term is better than none and you won't know unless we try it!!! Three years i have waited, i am desperate, as i am, and need your help.

So now im back in the waiting game, and i dont think they can offer long term help but i told A that short term has helped me and A will only find out the same as i have told her from C.

My son is coming up two and he is perfect for his age, speech, cognitive development, motor skills etc. Perfect, and all A kept asking about was my son! He does not need any help, i need the help and i am fed up as he is also safe and in a safe and warm, loving environment!

I still use the anti-smacking, conditioning, token economy, time outs, distraction and ignoring techniques for tantrums from my previous work experience and education and i still have the BTEC national diploma book in early years.

A made me define all my experience and everything as if she had done nothing but ignore everything i had told her in the initial meeting, and i am gutted!

It is not my son that needs anything, all i need is someone to give me SOME time, to help me ACCEPT this disability!!!

Frustrated and feeling more and more alone, exhausted and fed up.

I do not care i am going to be honest, even though i am embarrassed, i have not had a proper bath or shower for about a month (flannel washes) and i have not washed my hair in 2 weeks because i could not due to my joint flare ups, i was bed bound downstairs on a sofa bed for the whole of August 2011, and i am still very ill. (hate not having downstairs toilet, just want to feel 'normal' or average and independent)

i need help soon.

There is NO home start to help us in this area or anything, thinking about it we have an OT assessment we are waiting for, but it might just be easier to move, this is because we can move into a property that meets my needs by having a downstairs toilet, and it might also have ramps etc, but we are needing the ramps changing here anyway as the metal grid holes are sharp and my two year old likes to poke the holes and has cut his fingers before and its really upsetting me, and were being measured for a new stairlift anyway as this one is breaking all the time so if we need those here, may aswell get them in a property that CAN be permanent and meets my needs!

It would mean we would never have to move again!

And life would be sooo much easier for us a family.

We're just worried and nervous with the stress of moving but people are right, theres no point keep patching this one up and getting stressed when we can move into one that can be adapted and suitable for my life, and my family's.

Definitely something we are considering....

Hope we can get help and things and im almost crying now at the thought of having a proper house, my needs met and our lives being so much easier!!!

We have no where to store the commode or wheelchairs or scooter here, and the cupboard under stairs, we had another look, may be too small for a toilet anyway! Maybe the OT is definitely right and moving would solve all our problems!

*fingers crossed*

Guess we had a very stressful move when we moved here and its put us off moving again as it was rushed, i was 35wks pregnant, we had no benefits as they were all pending, no fridge, no cooker, and a million and one additional problems, the house we havent decorated and have partly carpeted, downstairs is rugs etc, and this house has no rooms decorated at all, theyre all a state, and we may get a home with atleast one room done, but thats little things we could try and sort later. Its the fact we had so many problems moving and had to do so much all at once and had problems with BT charging us and SKY etc and on top bailiffs, many bailliffs from previous tenents that has gone on for 3 years as they are STILL illegally using this address to get loans! Don't know how they do it!!!

This time we move though, we have a choice, and we can do things step by step, and we dont have to accept the 1st thing offered, especially if it doesnt meet our needs, layout wise etc. So things CAN be easier but i know its still stressful.

*FINGERS REALLY CROSSED*

PLEASE wish us some good luck!!! <3

The council and social services have been great and so helpful so far and i hope that they can continue to support us throughout the move and adaptations etc.

Lets see :)

Feeling hopeful, and dreaming of a real life as a proper family in a home that can help us live our lives much easier....

Another Condition...

2011-09-21T01:26:00.000+01:00

PoTs:

Well i have found out that i have another condition linked with Hypermobility Syndrome, via a Hypermobility Charity known as HMSA.

Its part of Hypermobility in a way and I have often wondered why i get blurred vision, problems swallowing dry chips and food and having really low blood pressure at times, mainly after eating and after standing.

Here is the condition and information posted on Wikipedia about it, its known as PoTs: (long information to come:)

"Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia,^[1] more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively.^[2] Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.

Symptoms present in various degrees of severity depending on the patient. POTS can be severely debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.

Symptoms

The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.

This tachycardic response is sometimes accompanied by a decrease in blood pressure and a wide variety of symptoms associated with hypotension. Low blood pressure of any kind may promote the following:^[3]

lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)^[4]
exercise intolerance
extreme fatigue
syncope (fainting)
Excessive thirst (polydipsia)

Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms:

cold extremities
chest pain and discomfort
disorientation
tinnitus
dyspnea
headache
muscle weakness
tremulousness
visual disturbances

Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:

Cerebral hypoperfusion, when present, can cause cognitive and emotive difficulties. Symptoms that persist in the supine (recumbent) state are difficult to attribute to "cerebral hypoperfusion"

brain fog
burnout
decreased mental stamina
depression
difficulty finding the right word
impaired concentration
sleep disorders

Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms:

chills
feelings of fear
flushing
overheating
nervousness
over-stimulation

Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.

Prolonged inactivity of any cause, especially when much time is being spent in the supine (recumbent) position, will lead to a diminution in the usual orthostatic reflex. In other words, chronic inactivity with frequent assumption of the supine position will lead to the hallmark signs of POTS. This raises the question as to whether, in some cases, POTS is actually an epiphenomenon, and has resulted from prolonged inactivity. Since many POTS sufferers feel compelled to remain supine, the potential for a vicious cycle is obvious.

Associated conditions

POTS is often accompanied by vasovagal syncope, also called "neurally mediated hypotension" (NMH) or "neurocardiogenic syncope" (NCS). Vasovagal syncope is a fainting reflex due to a profound drop in blood pressure. Autonomic dysfunction that occurs with these disorders causes blood to inappropriately pool in the limbs away from the heart, lungs, and brain. The combination of misdirected bloodflow and hypotension will invoke syncope. Tachycardia associated with POTS may be a cardiac response to restore cerebral perfusion.
POTS may be a cause of chronic fatigue syndrome in patients that exhibit signs of orthostatic intolerance. Treating POTS will greatly improve or even eliminate disabling fatigue for these patients.
Some patients with fibromyalgia complain of dysautonomia-related symptoms. Treating these patients for POTS will often improve myofascial and neuropathic pain.
Autonomic dysfunction is most likely responsible for irritable bowel syndrome in many patients as well.
Patients with Ehlers-Danlos syndrome may also have POTS. Joint hypermobility is a feature of the most common subtype of Ehlers-Danlos.
Some POTS patients experience symptoms associated with restless leg syndrome. Treating POTS should also relieve these symptoms.
Some findings link this with hypermobility
A small percentage of pediatric cases of POTS have been associated with moderate to severe memory loss.^[6]

Causes

The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.

In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.^[7]

So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;

Alpha-receptor dysfunction may be occurring in some POTS patients.^[8] Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients.^[9]

Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS.^[10]

Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels.^[11] Free plasma norepinephrine also tends to be higher in these patients.

Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.

Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance,^[12] such as pure autonomic failure.

Recent studies have described a subset of POTS patients that appear to have elevated angiotensin II levels coupled with paradoxically reduced absolute blood volume, signs of increased sympathetic activity and reduced peripheral blood flow. This subset of POTS patients appear to have abnormal catabolism of Angiotensin II that may contribute to reduced blood volume and orthostatic intolerance.^[13]^[14]^[15]

Diagnosis

POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS. A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made. Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed.^{[citation needed]} A blood test may be performed to verify abnormally high levels of norepinephrine present in some POTS patients.

Between 75 and 80 percent of POTS patients are female and of the menstruating age. Most male patients develop POTS in their early to mid-teens during a growth spurt or following a viral or bacterial infection. Some women also develop POTS symptoms during or after pregnancy.

Prognosis

Most POTS patients will see symptom improvement over the course of several years. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution by their mid twenties^{[citation needed]}. Patients with post-viral POTS will also usually improve greatly or see a full symptom resolution. Adults who develop POTS, especially women during or after pregnancy, usually see milder improvement and can be plagued with their condition for life^{[citation needed]}. Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms. Patients with secondary POTS as a consequence of Ehlers-Danlos Syndrome will also usually struggle with symptoms for life. In some patients the only cure for POTS is time.^[16]

Recovered individuals do complain of occasional, non-debilitating recurrence of symptoms associated with autonomic dysfunction including dizzy spells, lightheadedness, flushing, transient syncope, and symptoms of irritable bowel syndrome^{[citation needed]}.

Treatment

Most patients will respond to some form of treatment. Lifestyle changes, particularly drinking extra water and avoiding trigger situations such as standing still or getting hot, are necessary for all patients. Some patients also benefit from the addition of other treatments, such as certain medications.

Dietary changes

Drinking more water improves symptoms for nearly all patients. Most patients are encouraged to drink at least 64 ounces (two liters) of water or other fluids each day.
Alcohol has been shown to drastically exacerbate all types of orthostatic intolerance vasodilation and dehydration properties. In addition to its adverse effects, it interacts unfavorably with many of the medications prescribed to POTS patients. due to its
Eating frequent, small meals can reduce gastrointestinal symptoms associated with POTS by requiring the diversion of less blood to the abdomen.
Increasing salt intake, by adding salt to food, taking salt tablets, or drinking sports drinks and other electrolyte solutions, is a treatment used for many people with POTS; however, salt is not recommended for all patients. Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension by helping the body retain water and thereby expand blood volume. Different physicians recommend different amounts of sodium to their patients.^[10]^[17]
Diets high in carbohydrates have been connected to impaired vasoconstrictive action. Eating foods with lower carbohydrate levels can mildly improve POTS symptoms.
Caffeine helps some POTS patients due to its stimulative effects; however, other patients report a worsening of symptoms with caffeine intake.
Tilting of bed to an angle of roughly 30 degrees can also help reduce symptoms. (Feet up, head down.)

Physical therapy and exercise

Exercise is very important for maintaining muscle strength and avoiding deconditioning. Though many POTS patients report difficulty exercising, some form of exercise is essential to controlling symptoms and eventually, improving the condition. Exercises that improve leg and abdominal strength may aid in improving the muscle pump and therefore preventing pooling of blood in the abdomen and lower extremities.

Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it.^[17] Certain modalities of exercise may be more tolerable initially, such as riding a recumbent bicycle or swimming. However, as tolerable, upright exercise may benefit the participant through orthostatic training. All exercise programs for POTS patients should begin with low intensity exercises for a short duration and progress slowly.

Medications

Several classes of drugs often provide symptom control and relief for POTS patients. Treatments must be carefully tested due to medication sensitivity often associated with POTS patients, and each patient will respond to different therapies in different ways.

The first line of treatment for POTS is usually fludrocortisone, or Florinef, a mineralcorticoid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment.

Dietary increases in sodium and sodium supplements are often used.

An 80 mg capsule of Propranolol.

Beta blockers such as atenolol and propanolol are often prescribed to treat POTS. These medications work by blocking the effects of epinephrine and norepinephrine released by the autonomic nervous system. Beta blockers also reduce sympathetic activity by blocking sympathetic impulses. For some patients, beta blockers increase POTS symptoms. Beta blockers may be dangerous to individuals with asthma or allergies.

Midodrine (Proamatine), is approved by the U.S. Food and Drug Administration (FDA) to treat orthostatic hypotension, a condition related to POTS. It is a stimulant that causes vasoconstriction and thereby increases blood pressure and allows more blood to return to the upper parts of the body. Use of midodrine is often discontinued due to intolerable side-effects, and it is known to cause supine hypertension (high blood pressure when lying down).

Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as Prozac Zoloft (Sertraline), Celexa (Citalopram), Lexapro (Escitalopram), and Paxil serotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor (Venlafaxine) and Cymbalta (Duloxetine) are even more effective. Tricyclic antidepressants, tetracyclic antidepressants, and monoamine oxidase inhibitors are also occasionally, but rarely, prescribed. A combination of two antidepressants, usually an SSRI or SNRI with Wellbutrin (Bupropion) or Remeron (Fluoxetine), (Paroxetine), can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that (Mirtazapine), is also shown to be very effective.

Medications used to treat attention deficit disorder and attention deficit hyperactivity disorder such as Ritalin (Methylphenidate) and Adderall effectively increase norepinehprine and dopamine levels, thereby increasing vasoconstriction and blood pressure.

In the UK Ivabradine has been used to treat patients with POTS symptoms with good effect. Ivabradine acts by reducing the heart rate in a mechanism different from beta blockers and calcium channel blockers, two commonly prescribed antianginal drugs. It is classified as a cardiotonic agent.

Anti-anxiety medications, such as Xanax (Alprazolam), Ativan (Lorazepam), and Klonopin adrenaline usually seen with POTS patients. (Clonazepam), can be used to combat imbalances of

Angiotensin converting enzyme inhibitors, or ACE inhibitors, are used to increase vascular capacity, cardiac output, and sodium and water excretion.
Clonidine can work in patients with reduced sympathetic activity. Clonidine lowers catecholamine(epinephrine and norepinephrine) production.
Disopyramide, or Norpace, is an antiarrhythmic medication that inhibits the release of epinephrine and norepinephrine.
Erythropoietin, used to treat anemia via intravenous infusion, is very effective at increasing blood volume. It is seldom used, however, due to the dangers of increasing the hematocrit, the inconvenience of intravenous infusion, and its prohibitively expensive cost.
Pregabalin or Lyrica, an anticonvulsant drug, has been shown to be especially effective in treating neuropathic pain associated with POTS. In fact, Lyrica was the first and, for its first year on the market the only, prescription drug approved by the FDA to treat fibromyalgia. Some POTS patients also report improvement in concentration and energy while on Lyrica.
Pseudoephedrine and phenylephrine, over the counter decongestants, increase vasoconstriction by promoting the release of norepinephrine.
Pyridostigmine, or Mestinon, inhibits the breakdown of acetylcholine, promoting autonomic nervous system activity. It is especially effective in patients who exhibit symptoms of excessive sympathetic activity.
Theophylline, a drug used to treat respiratory diseases such as COPD and asthma, is occasionally prescribed at low doses for POTS patients. Theophylline increases cardiac output, increases blood pressure, and stimulates epinephrine and norepinephrine therapeutic index, Theophylline is known to cause a wide variety of side-effects and even toxicity. production. Due to its very narrow
Women who report a worsening of symptoms during menstruation will often use combined (containing both estrogen and progestin) forms of hormonal contraception to prevent hormonal changes and an aggravation of their condition.

External body pressure

Pressure garments can reduce symptoms associated with orthostatic intolerance by constricting blood pressures with external body pressure.

Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30–40 mm Hg and will work best if they are waist high.^[18] Compression stockings should be fitted to achieve the greatest benefit.

Compressions suits (G-Suits) have also been used with some good results.^[19]^[20]

Changes in environment

Some patients report that symptoms worsen with changes in barometric pressure (for instance, before a thunderstorm) and changes from outdoors to indoors (presumably barometric pressure is higher inside) and depending on weight of clothes and coverage. These patients may find relief by moving to a new History

POTS was first named and identified by Schondorf and Low in 1993;^[24] however, the syndrome has been described in medical studies dating back to at least 1940. Hypertension associated with POTS has been previously described as the "hyperadrenergic syndrome" by Streeten^{[citation needed]} and as "idiopathic hypovolemia" by Fouad.^[25] Hypotension associated with POTS has been previously described as the "neurally mediated hypotension" form of POTS."

References and links can be found on the wikipedia site also.

I really hope this helps people out there that have been diagnosed with SPD and/or Hypermobility Syndrome, Fibromyalgia or other joint conditions, to understand some symptoms they have that were not really outlined in the joint conditions, and that may be outlined under 'symptoms' of POTS.

We do not have to suffer in silence and i know this has not been an 'official' diagnosis by a doctor but i will be showing my Dr this if and when i ever see him again. Or maybe the next one i see. If i see one.

SPD CHARITY: looking for Volunteers:

2011-09-19T21:52:00.002+01:00

Official Link for facebook users:

http://www.facebook.com/note.php?created&&note_id=221810881208099

FULL info provided below also:

Applicants for volunteer and trustee positions:

Please send the following questions filled out to:

help@supportpelvicdysfunction.co.uk

Please note: We have additional meetings with cavos but at this time they are not mandatory for trustees. (trustees may be welcome to come along to some of them, or all at a later date).

Required information via email or post.

POST: Please request corresponding postal address by calling 07721656764 on Mondays OR Fridays, 11am-4pm.

Suggestive advice line open from 10am-5pm on same days.

(The following information is mandatory whether the applicant is known by us or not.)

*If question is starred, it is mandatory.

(If you do not have a landline, please state in answer so question has been answered, however you must have atleast one mobile or telephone number you can put down so we can contact you.)

*Full name:

*Marital Status:

*Date of birth:

*Address and postcode incl town and county:

Phone numbers:

*Landline:

Mobile:

*Do you have SPD?

*(only if answered yes to previous question)

When did it occur, date occured mm/yy and if pregnant please state in weeks.

*Other conditions:

*All aids you use: e.g crutches...

*How many children do you have?

*Which child (if during pregnancy) did you develop SPD?

*What interest do you have in the charity your applying for?

*What, in your own words, does this charity do?

*Why do you want to be a volunteer or trustee for support pelvic dysfunction?

Email address:

*Do you work?

*If you work how many hours a week?

*What qualifications do you have?

*What work experience do you have?

*Have you completed any 1st aid courses, if so when, where and what was issued?

*Have you completed the workbook for Vulnerable adults, if so when and where?

*(This question only for trustee applicants)

Can you attend 3 mandatory meetings a year?

*What other time (excluding meetings) can you offer the charity?

Volunteers will be welcome to join in meetings if they wish at a later date.

3 meetings a year is mandatory for all trustees, however there may be additional meetings called to discuss important matters as they arise.

This is a start up charity, but will at all times be professionally run.

Thank you for your application and interest.

This is information needed from all people interested in volunteering or becoming a trustee.

Kind Regards,

(On behalf of)

Support Pelvic Dysfunction

help@supportpelvicdysfunction.co.uk

Never tolerate bullying or malicious actions:

2011-07-25T21:13:00.002+01:00

There are two types of people in the world defined as 'evil':

1: Those who do evil things.

and

2: Those that ALLOW evil things to happen.

IF at the time YOU DO have a choice, choose to use your voice!

I did a detailed presentation on bullying for my Key skills level 3 communications, because its an important topic and all I needed to do was help one person to have helped!

I dedicated most of my dinner times at shcool to people who needed to talk about their problems and i was professionally trained as a counsellor and i still use these abilities today with friends and on the SPD charity i have started up.

Bullying has always been... a problem, but that doesnt mean we should allow it to continue being a problem.

If i am honest (my own experience): A lot of teachers shouldnt teach due to their ignorance and attitudes, but we allegedly have a shortage and their attitudes dont help anyone, its not cool and the head teacher should abolish the negative behaviours some teachers have.

I myself was locked alone in a classroom for over an hour by my head teacher when i was in year seven, not every one knows this, and i was bullied by my head of year, but i changed schools in year 8 and became proud of being different. Whether your straight, gay or anything else, everyone has a right to have support and help against such malicious actions in life, school and even work.

I again have experienced a lot of malicious activity in the workplace, seriously malicious that is just as hard as being in school that at times do break people and help cause the millions of bullying related suicides every year, but until the bosses are willing to acknowledge it, what can we do?

We cant always change people but we can always defend ourselves even if it means losing our job, you should never put your financial situation above your life, if its making you depressed you need to save yourself and put yourself first. I can honestly say I have, I had a very unpleasant experience working for a council once and was taken for granted and even sexually harrassed and it was me that lost my job, I contacted the local MP but as long as it happens when you are with a temp agency it means you have NO RIGHTS and nothing can be done, no one can be brought to justice. I may have been unfairly fired but I know the truth and the truth also is that i was better off out of a place that KEEPS employers who do such malicious and maladaptive actions.

Life is not easy and it is full of pain at times, but we have more choices than people think. I have experienced domestic violence as well and im lucky to be alive today but my negative experiences have lead me to the good i have today, i made a choice, and i left my ex, and now i have an amazing husband and son.

I have nothing to be ashamed of, no reason to 'hide' why should we?

Sometimes surreal situations occur and no matter how you react the outcome will have been the same, we cannot stay awake at night thinking if i did this or that, sometimes there are just bad things and bad people and you wont always get a reason, and there wont always be reasons, but we do have choices. To get ourselves out of such situations as best as we can once we have fully understood whats going on, as the truth is sometimes you dont understand they are so surreal. The worst thing you can do is put yourself in the same places with the same people no matter whether at home, work or anywhere, and pretend that nothing ever happened, because you need to accept it did, and move on, away out of danger.

I just hope i can help motivate one person to make a change in their lives if anything like this is going on. My message to that person, yes you, would be: you deserve more than this! WAY more than this and YOU have the real choice and real control. The ability to allow change, accept what is happening and be the bravest you have ever been and leave.

All my love,

xxxxxxxx

SPD Awareness Campaign - WE NEED YOU!

2011-02-16T05:06:00.001Z

To raise awareness of the new charity www.supportpelvicdysfunction.co.uk we need YOU to help!

Image:

Facebook & OTHER social network Users: Please REPOST the business card image to your profile, either tag friends or post on peoples profiles, it takes a few minutes but helps many SPD sufferers that are suffering in silence! Please include this message "www.supportpelvicdysfunction.co.uk help in the SPD awareness campaign by new England Charity Support Pelvic Dysfunction by REPOSTING this or TAGGING friend!"

Please help our awareness campaign!

www.supportpelvicdysfunction.co.uk

Email: Please email this image to your friends with this paragraph (copy and paste) :

"1 in 4 pregnant women develop SPD, many are undiagnosed and many don't know they have SPD. Stop the suffering in silence by spreading the word as part of a raise awareness charity campaign started by Support Pelvic Dysfunction, a new England charity! Yet another thing to be proud of! It takes a few minutes to pass this email on to friends, but it helps hundreds of women that are suffering in silence, your mothers, sisters, daughters, nieces, and more will have probably had, has or will probably develop SPD at somepoint in their life. HELP prevent SPD becoming a permanent disability for women by spreading the word!"

E-mailing takes a few minutes but helps many SPD sufferers that are suffering in silence!

Please help our awareness campaign!

www.supportpelvicdysfunction.co.uk

Thank you to all the emails I have received to spdcharity@hotmail.co.uk within hours of setting up the site i have received thank you emails and emails from sufferers who i am proud to have been able to help and support, thanks to ALL of YOU who are spreading the word!

We may not have charity status as we are NEW but we are helping MANY people who are your Wives and Girlfriends! Your Mothers, Daughters & Friends! Women from all over England have contacted us for help, and even international sufferers NEED US!

Please keep on spreading the word and helping more and more sufferers!

The support group I have ran for the last 2 years opened my eyes to how much we NEED this charity! I cannot sit back and let people suffer like we have! Let's do something about it, and NOW is the chance!

THANK YOU!

SPD Charity ONLINE!!

2011-02-12T20:23:00.000Z

As many know i have been trying to start a charity for SPD for almost 2 years now! It's been a long time and a lot of research later here we are.

I need to state that the charity will be and is in no way affiliated with this blog page i set up and the facebook group. I will be running it as a seperate support site. Meanwhile while we wait for things people are welcome to use this site and the faceook group still.

The charity website and name is http://www.supportpelvicdysfunction.co.uk and is online and working :)

I have less than 12 months to raise the required 5k so i can register for charity status, meanwhile gather some trustess and get everything else organised.

I have high requirements for the trustees, CRB checks, they need training or experience in confidentiality, customer support and/or customer services, data protection act awareness, no secrets workbook for vulnerable adults, counselling and related liabilities, and much more.

Importantly i need people i can trust and who will help guide the charity and funding in the right directions, supporting all my aims and ideas for the charity.

You are more than welcome to share this charity address as we will be enabling online donation facilities soon and we need as much awareness as we can get!

We appreciate all the help we have received up until this point and i hope that we can be helped now through this most important stage!

Thank you to all who have supported us, read this, raised awareness and more and thank you to all who are and still do. x

HAPPY SPD AWARENESS DAY!

2011-02-01T14:23:00.001Z

♥ HAPPY SPD AWARENESS DAY ♥ TO SPD SUFFERERS EVERYWHERE! -GO TO http://pgpandspd.blogspot.com/ ♥

THIS is currently happening on Facebook.

1st FEBRUARY is now officially SPD AWARENESS DAY for all associated with this blog and the support group i run and will also be affiliated and used on my charity officially as an important way to help other SPD sufferers that may not know about this site or the support group and will need help!

1 in 4 women get SPD do not forget that! 20% get it so severe and are likely to need wheelchairs! And there are people with underlying conditions like me who develop SPD during pregnancy and it disables them more for life, due to being caused by the underlying condition!

Once you develop SPD you are so likely to get it again, not just in 2nd pregnancies! BUT also when you need smear tests, yup things like that, even during sex!

Thats why i am here! And i would love to declare my charity up and running but someone is coming to discuss that with me on thursday!

In the meantime I am here to help with this site and on facebook's support group where sufferers can PM me to get further help! I have helped so many SPD sufferers and I am here to help further!

So lets start raising awareness, anyone who sees this who has a facebook account, please make your status :

♥ HAPPY SPD AWARENESS DAY ♥ TO SPD SUFFERERS EVERYWHERE! -GO TO http://pgpandspd.blogspot.com/ ♥

NOTE:
THANK YOU TO ALL WHO ARE DOING THIS, AND INVITING PEOPLE TO THE SUPPORT GROUP AND MORE! WITHOUT YOU PEOPLE WOULD NOT BE HELPED! <3

THIS DAY IS DEDICATED TO ALL SPD SUFFERERS WORLDWIDE WHO DESERVE RESPECT, TO BE BELIEVED, TO BE HELPED, TO HAVE PEOPLE TO SUPPORT THEM, TO HAVE GENUINE FRIENDS WHO GENUINELY CARE AND WILL STICK BY THEM EVEN IF THEY DEVELOP IT SEVERELY AND END UP IN A WHEELCHAIR, WHEELCHAIRS DO NOT DEFINE WHO PEOPLE ARE AND WE SPD SUFFERERS ARE GENUINE PEOPLE, WE ROCK DONT WE!

WE ROCK BECAUSE EVERYDAY IS A CHALLENGE - IT DOESNT MATTER IF YOU HAVE MINOR OR MAJOR SPD, IT STILL EFFECTS OUR SELF ESTEEM, OUR MOBILITY, AND OUR ATTEMPTS AT DOING EVERYTHING WE WANT TO AS A MAM AS SOME OF US CANNOT FULFILL OUR DUTIES BUT WE WILL NEVER FAIL OUR CHILD(REN).

JUST BECAUSE WE CANNOT DO CERTAIN THINGS FOR OUR CHILD(REN) DOES NOT MEAN WE HAVE FAILED THEM BECAUSE WE TRY TWICE AS HARD AS OTHER PEOPLE TO DO THE THINGS WE DO AND WE LOVE OUR CHILD(REN) VERY MUCH!

SO THINK OF US ALL TODAY, THINK ABOUT THE ONES WHO CANNOT USE STAIRS, WHO CANNOT PICK UP THEIR CHILD(REN) !

THE ONES YOU DO NOT BELIEVE ARE ILL WITH SPD BECAUSE IT IS NOT A VISUAL CONDITION!

TO WOMEN & MOTHERS EVERYWHERE, THIS DAY IS FOR YOU!

Happy New year!

2011-01-22T15:12:00.000Z

I would like to wish you all a happy new year!

I hope that those of you who were expecting have had your healthy babies and I pray that your SPD gets better soon! Some recover so I pray that you all do!

My miracle baby is now a toddler and it's now showing up all the things I cannot do as a mother and I am pushing myself and hurting myself because I love my son so much!

I still have SPD and Diastastis, from july 2009 to today... my child's 13 months old.

It is my joint disability that is the worst, i have been stuck in many days and my hsuband is extremely supportive but it gets to him also.

The cold is extremely painful and I ache so much today from head to toe, my disability is heading into the bed bound direction and I am feeling more and more of a failure as a wife and a mother.

I have to be honest as a human being and I know this disability is a small sacrifice to be blessed with such a miracle baby and it is not that I do not appreciate what has happened, it is the determination in me to be a better person.

I am now doing my charity donating via the internet and I have to shop online and the best way to do that is by using auction websites.

I have so much pain in the morning and again from 3-4pm and I cannot always do my shopping around those times especially since I am having a bad week.

I have been up since 5am as my son is getting more and more teeth coming through and I wish dearly to be able to comfort him more, my husband is exhausted. I feel more of a failure because my family help us every week and the grandparents have our child 2 nights every week to help us and we only got our son back yesterday, this night of my disability pain and our son teething has exhausted both of us which means it's harder to work as a team.

I do what I can. I let my son climb onto me and i cuddle him as long as he is not kneeing me in my pelvis i am usually ok to do that and I try my best to play the games with him from my seat on the sofa.

Speaking of the sofa, it has been my home for the last 3 months and I am praying for warmer weather so I can go outside one day and just breathe, you tend to feel like you are suffocating somewhat and stress is a major problem right now as I am not allowed to be stressed.

My blood pressure gets really low when stressed and i faint. I can usually hurt my head or my joints and need carers and ambulances when this occurs really bad but right now when i feel faint i try to lie down on the sofa and cling to it really.

I keep telling myself I am doing what I can but it's hard to explain that to a child who wants you to sit on the floor with him and play and you cannot. Or when the husbands in the kitchen and you cannot chase after the child and when the child becomes attention seeking at these times and plays with things he should not have and you cannot stop him and have to call in your husband which means the only thing we can do is put the child in his highchair (which is a low chair as we removed the extension legs to make it a small chair) this makes me able to feed him from the sofa at times when i am in the least pain.

I am fed up of the morphine! I am fed up of the nerve blockers, the anti-inflammatories and the other pain relief medication... I want to be med free...

Being on such medication is consistently taking away any and all possibility of having another child in a couple of years if everything is sorted.

Right now we could not afford another child, and the house needs decorating and made more homely, but i do have the right methods to prevent pregnancy at this time, as i have to.

I disagree with abortion so i have no choice but to have the right contraceptives.

The other problem i face is socially... i look ok but i am disabled and i feel like sometimes people are expecting me to stand up jump around and be like yeah i lied. But what they should think of is why someone like me would lie about being disabled... there is nothing to gain by this, and it is something i just have to live with! I lost my home, lost my business, does no one have common sense?

Women pregnant or not who have SPD need respect and help!

I need support right now but still no signs of the heath psychologist i was promised, its only one of the charities i donate to that are offering me support because i joined. it is the charity for my joint condition.

I am worried at the moment... worried about money, worried about not having enough, i donate what i can but i am sensible with money! I cannot go on large spending sprees and our money mainly goes on food.

Our telephone and internet provider recently charged me £95 for services without telling me there was going to be a £50 increase on my bill so i have cancelled what i can!

Unfortunately we need to pay out for our free anytime calls as we make a lot of support and emergency calls to family and support workers and then there are the companies regarding bills you need to call. And we need our internet, and the thing that hits us the most right now and is consuming what money we have left is the heating.

My joint disability causes great pain when i am cold, so i wrap up all the time, i have 2 fleece blankets, comfy jogging bottoms with plenty of slipper socks, vests and jumpers, and then cardigans but my husband needs to keep the heating on and well its really expensive... but its life and right now i just want to rant about all my worries.

This is the only place i can be me.

I do not wish to be judged, just understood, and i am always willing to help others with the same and similar conditions and experiences. I just want people to realise how hard it is and hear a few home truths about being a disabled mother.

I started writing my book finally 2 days ago. I also started re-rooting one of my dolls heads (i became a doll collector as a hobby to keep me sane during these troubled times) but i have not done any more since starting, it will take me a lot longer due to my joints, and even typing has locked my left hand up now so i am typing one handed and in agony.

I guess i should come back later.

Point: 1 in 4 women go through this, temporary or permanently and you need to be aware and support them, yoru daughters, mothers, aunts, sisters, cousins, nieces, lots of women... please help us, we need you.

HOW TO SURVIVE WITH SPD OVER THE WINTER PERIOD:

2010-12-03T19:05:00.002Z

HOW TO SURVIVE WITH SPD OVER THE WINTER PERIOD:

Here are a few things you can do to help you stay well and as pain free as possible this Christmas Period:

Avoid going out if your SPD is very severe and if the weather is very poor,the cold can make your SPD much worse so you must stay warm.

Shop online, or get a relative to shop for things you need for you.

We understand that being stuck at home can make you feel trapped and can affect your self esteem, so we suggest that you invite people over to you and invite people who will understand and can help you be happy and remain positive about the SPD and the situation you are in.

It does not matter the severity of the SPD or whether or not you are pregnant with SPD or have had your baby and still have your SPD, SPD at any level, in any situation causes pain, makes you uncomfortable, and can affect your mobility and can make you feel low or affect your confidence.

You are not alone and the support group is a great place to start if you start feeling alone, get yourself online and talk to other sufferers, the links at the top of this page and is a few clicks away and for facebook users. Apologies if you are not on facebook, and in this circumstance you could create an account and meet more SPD sufferers or could click on the other links and boost your confidence yourself by reading the "but you don't look sick" article also known as the "spoon theory" which is around the last of the links.

Keep your pain at bay by being in touch with you GP, telephone consultations are usually the best for matters the Dr. would not come out for and for when you really cannot get to see the Dr.
Make sure you have the right pain relief for you and if it is not working phone that Dr!

You can keep warm by wearing jumpers, and comfortable and loose jogging bottoms if the jeans and other trousers are causing more pain around your pelvic area.

Hot water bottles on the front of your pelvis where your symphysis pubis bone is, around the middle of the female 'V' shape at the front of your pelvis. This will feel quite tender when it is at it's worst so you could try massaging it if it helps, if it causes more pain then cease massaging as you do not want to suffer more, if i am honest massaging has helped me in the past but i cannot confirm it will be suitable for everyone.

Hot water bottles in your bed before going to bed is a good idea.

Some SPD sufferers will find they have pain around the back of their pelvis, so massage and hot water bottles can both still be just as applicable to the lower back/back of the pelvis.

There are also various pain management techniques to help deal with pain, breathing, distraction, relaxation, imagination and setting goals/planning, to keep you busy. So to start if you don't know any pain management techniques at all you can always try searching the internet to find a range of things you can try (this comes with a safety and common sense rule, if it looks like it will hurt do not try it as it is most likely not a pain relief technique and you know what will or could work for you so make sure you search trusted sites) or to start you off you can try breathing.

Now i will be back to add some more tips to this blog section, but for now I will help you through your breathing and relaxation.

(Read through this once then do the small planning for yourself before you do this yourself, as you need to plan an alternative imaginative place if your scared of heights, and plan up to 5 sentences of positive things about yourself)

Make sure you are in a comfortable position, if not pregnant on your back is the best, if pregnant with SPD comfortably on your side with a pillow between your knees in a symmetrical position, make sure you are as comfy as you can be with your pain.

Make sure phones are off, you wont be disturbed and that you have atleast an hour of time to yourself before you try this exercise, you can have a phone switched on and on silent if your pregnant and would need to contact someone if labour stars, be sensible but dont have a phone next to you if you don't need to, your getting away from your pain and stress for merely a moment.

Now, start breathing slowly, in through your nose and out through your mouth, deep breaths.

Take a long breath in, hold for 3 seconds and then a long breath out, and continue this throughout this exercise.

Now you are relaxing and comfortable and have control over your breathing, i would then want you to think about a place of your choice, being laid on a beach with blue skies above, nice and warm, a countryside, floating over the sea, whichever as long as you imagine yourself warm and alone.

Keep breathing, and imagining this lovely place your at, then imagine yourself getting lighter and lighter, as if your starting to float, and your lifing up in your imagined place and floating up toward the sky, still breathing in and out and holding, deep breaths.

And for the next few minutes or for as long as your enjoying it imagine yourself as if you were a feather, floating over gorgeous villages or scenery, looking down, comfortable and warm, and after you have floated a while imagine yourself landing slowly down onto a gorgeous comfy bed.

Then - mmmhmmm your not done yet *winks* start telling yourself positive things!

These will be 3-5 sentences you conjure up yourself, or could use the following ones to help you:

I am strong and confident.
I am beautiful / handsome.
I am intelligent.
I am happy.
I am a Mam / Dad.
I am tall / short.
I have beautiful _________.
I can be _____________.
I have ______________ /willpower/ strength/courage/support/family/husband/wife etc...

After this you need to open your eyes, then make sure you sit up slowly, and then stand slowly as long as you are not dizzy, or you could have a nap?

You can also try positive thinking exercises like:

Writing 10 of these: I wills and I cans, then linking them to i have's.

(best to do this in a note book, these on the left page and the i haves on the right)

Ok so you write I can something and underneath, i will that same something.

I can cope,
I will cope and do 10 of these so 20 lines.

Afterwards on the right page, you write 10 i haves. and you have to write these to link to your wills and cans, for example the cope one could link to i have strength or support or willpower, these sorts of words. And you can always choose to read some of these in your head during the exercise.

Feeling happier = feeling better as stress can make pain worse.

These exercises have worked for me personally and therefore hopefully work for you, I know the relaxation and breathing can make you feel a bit silly at first but I emphasise that you really take it seriously and give it ago as all women know breathing the same is advised for labour pains and these sorts of exercises have been used for a very long time.

PLEASE NOTE:
The ideas supplied are personal ideas that I have conjured up myself for positive exercises and the relaxation exercise is used generally but the idea used within including the example floating exercise and the positive statements used are all my ideas and are not allowed to be distributed without my written consent. However I have publicly put these in my blog for the sole use of pain relief and positive thinking for SPD sufferers and/or disabled people's use only.
These Ideas are ©2010 and you can find me on the support group if you needed to contact me.

Have more tips to add will be back here...

more to come...

2 Years since 1st diagnosis & baby's 1st birthday...

2010-11-24T10:20:00.002Z

Some people advise speaking to people older than them about SPD but it really does not matter who you speak to about it as long as they understand it or have experienced it themselves.

I spoke to a retired midwife when i became disabled with my joint condition which caused the spd and i have it and diastasis permanent now, she just said the same as everyone else to be honest, SPD was there even BC she said she had read one of the philosophers actually mentioned it too, and her advice was the same as all the advisors and pelvic partnership.

Unfortunately you pretty much just have to try and live your life with it as best as you can, with the right pain relief and help you deserve.

Im on pain relief and have my wheelchair as im severely mobility impaired now and I still need my stairlift, (for readers who maybe new to the blog) but I have been like this for 2 years and im 23 years old now.

Why I started my support group?

I created the group so women of all ages can talk to women of all experiences including the variations of time they have had the condition and i feel this is the best way.

We have a discussions section for personal stories and blogs, i have a blog which merges with a huge information section of all the links you need if your new to SPD or need help with dr's or even coping with it if long term sufferer.

I advise people to create blogs and share them, it really helps to find someone who understands you and what your going through as opposed to someone who has merely observed the condition clinically through said career paths.

There is more than whats needed of info on this blogspot site and i cannot emphasise how important it is to help us raise awareness of SPD and that starts here, by you inviting every person you can on facebook to the support group on facebook and linking them to follow this blog so more people can find that we are here to help people with SPD and there will be many women suffering in silence right now, so we need to act NOW to see that the people that need the help get it and the people that do not know about SPD find out about it, remember 1 in 4 women get SPD and 20% get it severely.

There is one thing i really detest and thats staff in the medical profession's ignoring SPD, read what i have been through then you will understand.

I am there as an officer on my facebook support group if anyone needs to talk or ask questions, or just for general support, its what i have dedicated my life to doing now, I am dedicated to the group and helping as many SPD sufferers as I can, my support group's my life and i will do anything i can and go all the way to help anyone who needs me further :)

I would like to emphasise the importance of letting people know this blogspot site exists, so they can learn about SPD and have access to all the information and research I have found continuously since I became an SPD sufferer and can choose to access the support group if they would like to.

Baby's 1st Birthday

I am pleased to say that baby has had a wonderful birthday we did everything we possibly could have for him and he was extremely excited and well behaved. We are so proud.

He even ripped the paper off his presents, but got frustrated when we had to switch to another present as he wanted to play with the first so much but my mam was getting it out of its packaging. We had a mini cake for him to blow the candles out, and a Thomas the tank engine cake so everyone could have a piece.

He got a range of surprises and he loves the Tomy eggs and his Trucks and his Winnie the pooh Spintop ball the most, but we also got him some children's drums and play instruments which he had a field day with!!

It was really nice to have a day like this and i cried happy tears upon going to bed, it was just simply wonderful!

He is walking so much more now, and doing so fantastic, he is speaking clearer and there are a few words being repeated now and I cannot put it into words how I feel, amazing!

He is our miracle baby and it still has not fully sank in that I am finally a mother, although I know I am a mother, it still surprises me everyday, if you know what I mean.

I am really happy at the moment which makes a big change and i feel lucky to have my husband also.

It is not easy for him, and he wants to be able to fix everything that goes wrong, and it hurts him when we are in situations where the healthcare are not treating me with respect or dignity and he does speak up and gets frustrated when they do not listen and just accuse him wrongly of arguing. Not going into specifics we have been through several situations of trauma and the counselling is really helping to vent it out and cry it out, jointly for both of us.

2 years is a long time to wait for such help but it is still appreciated. Our full story for those who are new to this blog, is all here on this blog site.

We have contacted my support worker to organise some more help, and we will find out how much we will have to pay after today, when they do the financial assessment.

That will give us the time we need, as we could not bear to put baby in a childcare situation, for personal reasons. He is very special to both of us and we would miss him.

We do have some family support on my side also so that as well as this help will help us to be more like a normal family.

We are getting there, we are all getting more and more into a routine and things are starting to get more easy for us, well we have my powered wheelchair now, and I still have my stairlift and bathroom adapted, which I thank my lucky stars for every second of every day it is just wonderful. We are starting to get back to normal, well as close to normal as we can get at this point.

We got so much more of the house sorted ourselves now and we are feeling much better for getting it done, although i wasnt a great deal of help, i did sit and organise through some things, and it did help husband which made me happy.

Although you can never get 'used' to a disability, it is getting easier.

All our love.

I am Disgusted at the hospital lying again...

2010-11-15T18:39:00.003Z

I have just heard on the news that a little child has died from being dismissed and going back to the hospital I have been dealing with, from lack of diagnosis of a majorly recognisable condition without pain relief!

I have put a complaint into the same hospital about the lack of care and clinical negligence I received from / in the same department, thankfully I was not at a point in my life where I could have died, however as a disabled mother being left to fall off a high bed, having the pain relief of gas and air taken away and then being left on the floor, hit with the door and prodded (and much much worse all in a previous log/blog) and they did not care then, and they are pretending to care now by labelling themselves as having a high level of care 'usually'.

Instead of an apology they have made false and offensive allegations towards myself and my husband that will consistently affect the level of care every time I would need to go into hospital by writing abusive and offensive, false statements in their notes, claiming I have challenging behaviour, am deluded, am not disabled despite all evidence and diagnosis to justify otherwise, and that I apparantly should have my stairlift taken away and I have OCD. All lies.

I am actually quite concerned at the distress the family have now got to face due to this hospitals staff's constant negligence.

My sympathies lie with that family in particular and all other people who have been affected by this hospital which I am not going to name.

Instead I am putting a case together myself, to claim compensation and to prove my innocence in court so when i need to go into hospital again I will be safe and treat with care and respect, not deliberately abused nor physically hurt as I have experienced over and over the last 2 years starting February 2009.

This is disgusting and I urge all other people to step forward to put complaints in, and to take things further when the complaints system laughs at them and makes their situations worse and life threatening.

If I became seriously ill I could not trust the hospital, or any hospital who has my notes at this time, to treat me with the respect I deserve because they have falsely tainted my reputation and defamed me in my medical notes ; and with the way they act in regards to refusing treatment for smokers, how are they going to act when they read that I am allegedly (falsly I may add) abusive to staff and have no disability and a history of challenging behaviour, all lies. LIES!

Well i can answer that one easily, how they have been treating me after the allegations were made, ignoring me, refusing to use pat slides, and even getting a security guard in all the time leaving me to suffer all the more as opposed to getting the treatment anyone should deserve, afterall I am innocent and have only been a victim of their abuse.

Please help in my campaign to stamp out hospital negligence and abuse to vulnerable and all innocent patients!!!

Headaches, stress and identity theft.

2010-11-05T17:58:00.003Z

Headache after headache:

Small reflect on the situation:

I am now in a wheelchair and I have an underlying joint condition ( a genuine disability ) that caused my spd during pregnancy, i am now disabled for life and its all still really raw for me because its only been 2 years that i have been disabled and i have just got a counsellor who is lovely and i have not had that, its wonderful, BUT its opened the box of problems up so im very sensitive right now.
Whats going on with my life:

I try to be as strong as I can be and i like everyone to believe i am a strong person but those that know me know deep down, i have such a big heart and because i care, things do bother me.

I am grieving a past life and some deaths of people i care about,
I am wanting to be a better mother and my baby is a year old nearly and we need to organise for his birthday, and i feel he is slipping away from me because he is into everything and pushing boundaries but i cannot say no to him like my husband can, he can go over and pick him up and say no. But i am stuck sat there and it reminds me of the early days again when he was in the moses basked crying and i couldnt pick him up, i was helpless, when he needed me. He needs me so much and I am trying to be there but it is still really hard when all your plans of things you would do as a mother has been stripped away from you as you have limited abilities. Very limited.

I know i need to be in control as opposed to the disability but at the moment, the disability is in control of me.

There is no one to blame for my disability because it was hereditory and my mother has it.

Underneath it all my husband and I (people forget he has gone through all of this as an onlooker) are both struggling to come to terms with the negative experiences of unfairness we both have experienced and more, and right now i cannot go to hospital because the notes wont be amended, and cut a long story short they dont believe im disabled (so i have to bring all my evidence) and as well as that, one abusive incident i experienced (all in a previous blog, i fell from a bed, they hit me with the door and prodded me) they lied to my dad and husband as true honest witnesses and said i was lashing out and had trashed the room etc but they both knew i had not and saw so. i was left on the floor that specific incident and i dont wish to go into too much detail as it is in all honesty so embarrassing for me.
All the incidents we are both dealing with here are very serious in nature, and we are terrified that we were not the 1st and wont be the last and many disabled people or spd sufferers are going through this!

Cut a long story short, if anything serious happened (life threatening) to me right now, i could not go into hospital because they would think im abusive and treat me bad or think i am not disabled and damage my pelvis or joints etc or let me fall and leave me, so we have looked into everything and the only option for us is to speak with a solicitor and take them to court to amend the notes so i can be treat with respect and properly like any disabled person/ young mother deserves.

And i am scared!

I dont want to do this, my husband who has dedicated his life to being my 24/7 carer and cares mostly for our baby too, wanted closure, as did i.
And they wont give it and they are leaving me in a very vulnerable position.

Nobody wants to take anybody to court and everyone wants an easy pleasant life, well we do and we assume most people would!

Sometimes i am thinking, end it all, give your husband and son a good life! Because the problems with others are all surrounding this disability which is beyond my control!

BEYOND MY CONTROL being the emphasis! :(

I am in need of some good coping mechanisms....

I need to cope better right now...

I am having problems with the DPN, (disabled parents network) the advocate wanted to close my case over and over and well i guess she has what she wanted now but its left us without help when i have recommended them to over 600 members of my support group and was planning a charity event to raise a lot of money for them and the advocate would not even let me talk to them, the only time they ever phoned me was this morning to tell me she had got what she wanted and when i tried to tell her the things i needed to before, when she was trying to close my case in the first place, she accused me of arguing so i cried said your mean and hung up.

So now i have to retract all my recommendations as they refuse to help us, she obviously doesnt like her job is what my husband said. personally i dont know but maybe she is over worked, but she should have listened to our needs and what we need and helped us.

I phoned up and spoke to a nicer lady who should be advocate because she wants to help people and understands disabled parents problems, and she will be getting the advocates manager to call me next week but im not expecting anything other than, shes closed your case.

yes i know thank you shes ignored our serious needs and left us in a vulnerable position, erm thanks??

As well as that:

Some one used my details to set up an IT account, and from past experiences, we have reason to believe it could be my ex, so it has been noted to the police and we will take action to anything that may happen at any time in future, of course we hope nothing will.

SO much stress

I am going to try and eat today and have a cup of tea, and i hope to God i dont cry later.

The one thing i do have is my support group and i am proud of a few people who have come forward to help me help people by becoming a point of contact as additional officers :)

council worker hurls abuse over phone!

2010-08-06T20:05:00.001+01:00

OK, so i was getting somewhere, everything has been sorted.... so hopefully there should be nothing to make me ill again (been so ill from the stress of social services etc i have been passing out / fainting - ending up in hospital, banging my head and that, ECG's, palpitations, chest pains, fuzzy headedness, the works) and now i thought it was at an end, the bathroom and toilet accessibility for the disabled (that is me) 'works' been finally submitted to be done etc i get a council worker who should be doing the work phoning me and insulting me and my family and questioning everything, which if he was supposed to know 'everything' they would have sent him copies of the letters etc wouldnt they?

There was a letter received this morning saying that the council had acknowleged my complaint, and so i phoned to find out what this alleged complaint was as i had not made any, to find it was about a gentleman who we had problems with, so i cancelled the complaint and said look all we need to know is the date for the works to be completed, so they said they would get this gentleman B to phone us back.

B did, only to get me to justify everything to him!

Its been such a long time that I have had abuse and false promises from social services, for 19 months now and the council guy B phones me up ...and talks to me like i'm nothing this morning and is winding us up but he DOES know its all affecting the whole family as its in regards to making my home accessible, and it REALLY gets to ya! I have told him the whole situation and how long we have waited etc.... and he comes on the phone wanting to be justified to when hes obviously not that important as everything as far as we are concerned is sorted, everything has been promised by MANAGER 'P' to be made permanent now hes got the letter from the Dr confirming my chronic Hypermobility syndrome and things and the works been confirmed to be done to the council.

Now i get B who should be doing the work questioning it, and on top of that possibly delaying it to have a meeting to decide whether or not he should do the work (when its been confirmed mind) telling me obviously my home is not good enough for me (well it would be suitable if he did the job he is paid to do) never mind going on about if my disability changes and that, that as far as i was concerned was socials worry and that's been sorted!! Why have a meeting?

All he needs to do (if he even needs to as its been spelt out for him very precisely) is assess the bathroom and then do the work as soon as he can but to insult me and talk to me so rudely and abusively this morning, was really traumatising, made us late for baby to go out too!

I do not understand why he is doing this knowing its been 19 months, and for a few months actually knowing the work request was coming as we were waiting for it to be made urgent as B stated he needed recommendations. He has the recommendations and they are in writing and already confirmed to be done. For him to say NO I'm not doing it, it may NOT BE 'worthwhile' is degrading to EVERYONE WITH A DISABILITY, as the message there is that we deserve to live without access to the urgent facilities we need, hygiene and toilet use!! Yet also he / council has REFUSED to rehome us to a working home with an accessible toilet and bathroom in the meantime!!

B is doing the meeting at my home as if now he wants things to be convenient! And I do not know when it will be yet either and when he made me cry because he knows how much I am suffering from all of this, he has heard it plenty of time, to say "you are crying for nothing" is the biggest insult I have had yet! Oh well apart from the one when we were bringing the baby home and the people in the park shouted "She's disabled from being shagged so hard!" Where do we get these people?

I am well sick and fed up and ill, so I hope that they are happy atleast and I want to OUT the council so bad and TELL YOU who they are!!! But I have too much respect and decided to just state things on here and not be malicious to tell you who they are or where I am from!

DISABLED PEOPLE ARE WORTH MORE THAN THIS, SO WHY BE TREAT SO ABUSIVELY?

And why do the meeting anyway if he says they are going to say YES anyway? Why organise a meeting when he is telling me the answer??? Because by having the meeting he is being hypocritical and contradicting himself and also adding EXTRA worry and STRESS to our family as by having the meeting the meeting itself infers that there could be a NO?!?!

And if there is a NO (which B said was looking too far into it, he would wouldn't he as he is not in this position) we would face moving and it would actually KILL me!

I cannot physically cope moving again not including all the many hundreds of other facts as to why we literally will not be able to! They have had me so suicidal, I finally pick the pieces of that up and I end up in hospital because of the stress and I get more and more abuse from them, I would be ASHAMED if I were THEM!

ASHAMED, the COUNTY COUNCIL SHOULD BE ASHAMED TO HAVE SUCH STAFF TOO!

As it was stated by the chairwoman 1st march 2010 "This needs to STOP now, this girl has gone through enough! A decision needs to be MADE TODAY!"

.....6th August 2010 and still fighting and B was not happy when i said i will have to get the ombudsmen to re-open the case, the M.P back involved (if they can be bothered too after the correspondence I have received) and Shelter back on the case, what does he expect?

And social were like: " Well the recommendations have been put through but whether they will be done or not is up to the council and we are not responsible if there are any problems" Just pushing the blame off each other constantly!

How are these people/councils/services actually supposed to help people exactly????

I need help urgently.....!!!!!!

LOCAL ARTICLES REGARDING DISABLED ISSUES

2010-07-25T12:53:00.000+01:00

I have read and responded to an article posted in my local towns newspaper, and i have also found another response which I thought was interesting.

The original article:

"Can We Afford This Level Of Care?
Thursday, 15 July 2010

...Dear Sir,
Reflecting on the current need to cut costs to reduce the country’s enormous debt I was drawn to an instance which bears investigation.
I live near a bungalow which has been purchased and converted to house a disabled person. I notice three staff in attendance 24 hours a day and if you calculate the cost of the house and the salaries of all these professional people, it is colossal.
Whilst I agree with the policy of accommodating disabled people within the community there has to be a limit and a sensible economic approach especially when NHS funds are stretched to the limit.
Concerned
Name & address supplied."

MY RESPONSE:

"Don't Make More Problems for Disabled.

Friday 25th July 2010

Dear Sir,
I am a 23 year old new Mam, a lifelong Newtonian, that has recently become disabled for life. Due to it being a mobility impairment people have tended to assume, because I look... OK, that I can walk and do things like everyone else, but that is not the case.

I strongly rely on ‘Carelink’ and most of the people I know pay for the use of ‘Carelink’, which is an emergency system to which you can press a button and someone can attend your house, which I have used in instances of falls etc.
I do not appreciate your reader’s inference that levels of care for the disabled should be reduced. I personally live in a 2 bedroom house and have fought 15 months for a stairlift as I was not offered a bungalow. Luckily my husband is my 24/7 carer but not everyone has that privilege or ability and he has to do the majority of care for our 8 month old son,* a pregnancy which was not planned*(correction below) as I was self employed!

I cannot comment on this specific person but two people are needed to use a hoist. There are private companies that provide this care and if it was stopped or reduced, there would be more unemployment.

Since becoming disabled I have received abuse even at times when we have been using services. We have been shouted at directly near our baby boy which we did not appreciate. We have spoken to managers and owners of some places, where we have received offensive remarks and suggestions that my husband uses service instead of me.

We are adults that have gone from what you call a ‘normal’ and independent life to one of great difficulty. I know of another lady who suffered abuse toward her disabled child, and this needs to STOP!

There are people out there abusing the system, fraudulently receiving benefits, and I feel your reader is targeting an area he knows nothing about. Some disabled people pay for their own care and he assumes money to provide care is coming out of his pocket. His opinion would be different if he were in the same predicament.

I helped disabled people into employment prior to becoming disabled, and now I am offering an online support network to other mothers suffering from similar conditions to mine. The statements made just increase problems for the disabled. There are less services for us already than you think and we have to fight for everything.

I am still waiting for much needed services including a powered wheelchair. It is difficult for one person to push a pram and their partner in a wheelchair at the same time. Disabled people have enough problems - please don’t make more!

(MY name was printed HERE)
Address supplied.

Correction: * a pregnancy which was not planned *:

"i have requested a correction to be printed next paper as our son was planned what i said was that

"THE DISABILITY was NOT planned as you dont choose to be disabled."

- just some confusion there.... i became disabled during my pregnancy so that probably caused some confusion!"

ANOTHER RESPONSE:

Cheaper to House Disabled People in the Community.

"Dear (Editors name here),
...As a disabled person living in (towns name here) I was extremely concerned to read the letter headed ‘Can We Afford This Level of Care’ in your issue of July 16th.
The writer of this letter questioned the economics of allowing a severely disabled person to live in their community, supported with care 24/7, as against institutionalised care. Institutionalised care was not directly mentioned but presumably this would be the alternative envisaged by the writer.

I feel saddened that the writer should consider that a disabled person should be excluded from their community on the basis of pure economics.
I have always considered (towns name) to be an inclusive and welcoming town, containing as it does the wonderful (specific centre with disabled facilities named here) which has done so much to promote inclusivity for people with disabilities. I’m very concerned that an individual should feel they have the authority to question another person’s right to live in the community, based on pure speculation.
In point of fact it is substantially cheaper for a person to live supported in their community than in institutionalised care. The most human and caring course of action is also the most economical, thankfully.

The 1991 Community Care Act closed hospitals and transferred care for patients into the community, because it was cheaper. (This was an Act instituted by a Conservative Government, remember.) You can be absolutely sure that the most economic course of action has already been chosen.

The original letter stated that a bungalow has been ‘purchased and converted to house a disabled person’. Purchased by whom? It may have been purchased by that disabled person, perhaps funded by parents or a legacy. If purchased by the local authority the disabled person will be paying rent and the bungalow will be a valuable addition to social housing.
Regarding the salaries of the ‘three staff in attendance 24 hours a day’ quoted in the letter. I presume the writer means one member of staff present 24/7. Who would employ these carers if they were not employed by this disabled person? Would they all in fact be claiming jobseeker’s allowance and council/housing tax benefits?

We’re rapidly descending into a country of informers and malcontents. Why don’t people go after tax cheats with the same tenacity they uncover ‘facts’ about disabled people? This country would be infinitely better off if the tax cheats were brought to book. However, I would not think of writing in to the local paper suggesting that one of my neighbours was a tax cheat.

I mentioned that I am disabled. That phrase might lead you to assume I do not work and exist on benefits. In point of fact I work both from home and in the community in a highly professional and demanding job and contribute significantly to the local and national economy via the taxes I pay.
If you are tempted to write a letter based on pure assumption, think of how hurtful and inaccurate those assumptions might be. Then do your homework and write a letter based on facts.

Disabled Resident"

I wrote my response to open peoples minds, as i do not blame people for sticking to what they think they know as they have not been shown anything else, you are not taught about disabilities or disabled awareness and i merely think that it is a case of not being familiar as if people were disabled or knew disabled people they would be far more understanding as they observe various problems that the disabled have to face, some disabled people cannot work, some can, but this should not mean that one person is better than another.

Disabled people have great difficulty in everything and i can only suggest you read this theory to open peoples minds and help understanding regarding disabilities:

It is called the Spoon Theory and this theory shows the examples of restrictions due to physical impairments or exhaustion problems:

It is also known as an article called: BUT YOU DON'T LOOK SICK?

But You don't look sick?
Copyright: 2003 by Christine Miserandino butyoudontlooksick.com
A story that helps the disabled not just SPD sufferers:
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Hope this helps you understand better!

Update:

I personally still have some hurdles to tackle, my conditions have been diagnosed but I still need the Ehlers Danlos Syndrome confirmed as I am currently really ill suffering from a 'flare up' and my husband did some research and I have many indications and evidence that it is EDS.

I phoned 'person B' at the council regarding my bathroom and toilet being inaccessible, and they stated that they knew they needed to put in grab rails (still waiting) and take a look at the bath but they did not know they needed to look at the wall in between which is plasterboard and restricting me disabled access to both facilities. Person B stated they would contact Person J at social services who is my O.T and discuss further as I said we have now been waiting 18 months and Person B said Person J had not marked my case as Urgent!

This was over a week ago and Person J and Person B have not contacted me further so I am going to contact Person J tomorrow, Person J should have come out one wednesday but marked it off thinking it was about the stairlift when it was to bring Person B from council to see to the bathroom and toilet problems.

Person J stated they were very sorry.

I hope I get some answers tomorrow as I will have the Rheumatologists letter soon anyway to prove what I have and that it is lifelong.

I also spoke to an EDS online support group yesterday and it was refreshing to speak to someone who understand so much they could finish your sentences regarding the problems you face mobility wise.

So no further solutions as of yet.... waiting game again....

Question: lack of disability understanding:

2010-07-09T13:50:00.000+01:00

I got asked a question today on my facebook wall (not inbox) openly about Disability and I do not mind as I am a strong person when it comes to things like that and did not take offence but i warn you some disabled people will.

Remember not everyone knows even anything at all about disabilities so I am happy to post the question and my reply on here! I am here for anyone who needs me on my facebook support site and will help those that are worried about SPD and help make sure SPD sufferers whether previously unaware they were disabled, previously disabled or even not disabled at all, know what help they are entitled to, who they can go to for help and hopefully prevent SPD and / or DSP developing into a lifelong uncurable disability in itself:

Q: This was an open and public question posted on my wall (visable by every internet user) therefore I will post it as it was: (to help answer peoples concerns about SPD and Disability and any further open questions can and will be posted on here to help others understand if i feel there is a point to be made and people will be helped and i believe this question is genuine and needed to be addressed:

"Emma She-ra S*******n (Name was supplied by facebook to show who posted on my wall and I have censored the surname for privacy purposes and can remove more at the request of the individual):

hi there i no i aint wrote to you in the past but i was just reading through and was woundering what your disability is all about and how you class your self as been disabled i no a lad that got both his legs blown off in afgan and he can drive get up stairs without a stair lift as he sits on his bum to get up also he ...manages to get a bath and go to the toilet. i might be wrong but im only asking as i dont understand SPD plz could you explain thanks"

A: This is my open and public answer regarding the issues brought up:

"I have Ehlers Danlos Syndrome and Hypermobility syndrome which caused severe SPD (20%) in pregnancy which is a pelvic misalignment which can be made permanant and affect someones mobility if they do not get the facts and help they deserve and clearly need from professionals such as Osteopaths, Chiropractors and Physios that do manual therapy.

Unfortunately for SPD sufferers 1 in 4 non disabled women get SPD to some degree during pregnancy and since it can lead to DSP (back of the pelvis) and become permanant I want to make sure people get the info and help to prevent such complications.

For people like me who have had an undiagnosed disability from 14 that worsened to become a mobility impairment during pregnancy and cause uncurable SPD and possibe DSP (waiting for stork/asymmetrical scan) my mobility is severely impaired and because my joints are a problem i can lock up and become completely immobile and I am in constant chronic and severe pain.

I am on higher rate of DLA for mobility and Care, my husband is my 24/7 carer and does the majority of my care, i dont wish to go into that, and i am in a wheelchair, cannot use stairs, cannot walk unaided and not for long distances if and when i am able to stand and move a bit, i have better days, and bad days, depends on my condition as physio and exercise has an 80% of damaging something or causing pain which does not catch up to me till about 3 days later, i am registered disabled and awaiting a blue badge.

I have just had a stairlift put in and ramps now but i, my son and husband has lived in our living room for a total of15 months... the whole story is at http://pgpandspd.blogspot.com/ and i started the blog and info site and support group to help SPD sufferers survive through SPD and live a normal life, understand it, know how it can become a lifelong disability and get facts from professional places such as acpwh.org and pelvic partnership.

There are different variations of mobility impairments and so many different disabilities, and the 20% severe SPD sufferers are more likely to have an underlying joint or other disability causing the SPD soon (sooner than the 3rd trimester) as 9% of women can have spd and suffer from joint pains etc from conception according to NHS NICE guidelines.

You can read the blog/info site and gain more information and personal experiences from other people on our support group, links provided on my blog site.

Hope this helps.

Also, you cannot judge one persons disability from someone else who is disabled that you know, different people can and cant do different things...."

MORE from me:

MY condition has been diagnosed verbally by 2 health professionals and i will have evidence soon as I see a Rheumatologist on Monday.

I attended a course today for people who need to know how to cope with pain and living with long term conditions ran by the NHS. I have found this useful and suggest other people that need help discuss this with their Dr.

As you may have read our battle for the stairlift is over although my upstairs bathroom has a plasterboard wall seperating the bathroom and the toilet making both too narrow to access and the bath is smaller than standard baths and will not fit a suitable bath lift and will therefore need to be changed as the wall will need to be removed, we are working on solutions for these now.

It is a lot nicer being able to sleep upstairs and we may still have a way to go but I enjoyed my birthday very well due to the fact we now have a tidy, uncluttered living room with no beds or cots and although we have a lot to do we are finally allowed to have some amount of happiness entered into our lives...

I have my assessments further regarding the powered wheelchair so soon we could be completely finished and able to live a normal and respectful life with the right level of living conditions and accessibilty for me to feel more normal as opposed to being reminded of restrictions due to my mobility impairment....

We changed GPs and our new GPs have been more than fantastic and Social services have been very helpful the last few months and we are thankful for the stairlift and Ramps, so finally it is nice to say something positive and say a Thank You to social services.

Not wanting to put a negative on that but the point of the stairlift was still to access the only toilet in our house which is upstairs and access and use the bathroom also, but..... I know these are ongoing but atleast they are being addressed and we eagerly await closure!

From the meeting we had 1st March, some things that were promised have happened:

-Stairlift

-Ramps

BUT... these are ongoing:

-Powered chair

-Toilet access

-Bathroom/hygiene access

AND these have not happened at all:

-Transport to places I was promised access

-Promised access to a bathing facility

-Hydrotherapy pool

-Gym

-Community bus/transport

etc...

So as you have now been updated, I do hope this will help you see what we have gone through, what is yet to come and what has not happened at all!

Right now my knees are killing me so much and my elbows and wrists are second to that with the front and back of my pelvis being really angry.

I do think it could be down to hormones released from my new Implanon contraceptive implant, upper left arm, as my condition worsened during pregnancy and prior to that I had pain and problems in cold weather, during and around my periods, warmth helped the pain and we will have to see if this gets better soon.

I want to make it known that I want to prevent what we went through and enforce and ecourage helpd and understanding to SPD and or pelvic/joint sufferers during pregnancy and more.

Another plus is that I have finished my complaint regarding what happened during my pregnancy and the treatment *coughs* lack of treatment as well as how we were treat. I hope this is thoroughly investigated and prevents the suffering of more women.

It's a disability not a curse....

2010-04-08T01:26:00.001+01:00

... I am starting to feel like i am the only person who has ever been disabled, as it is me, or is the world suddenly naive and arrogant towards the less abled?

Ok, so I went in to town as I had to go to a counselling appointment and the counsellor i have been given who spent the whole of today being really abrupt, forward and insensitive and kept repeating about how to get discharged and really making it sound like she hates her job, telling me a lot, that its exclusive.

I am only allowed 6 sessions ever, and that this introduction one counts as one, and what do i want to get from counselling, despite me telling her serious incidents of malpractice about local hospital and other serious incidents and about my disability she still acts like doesn't have time for that as she has more to over explain about confidentiality and to repeat and to re ask lots if i really need this as if i dont some one else can replace this opportunity and despite my joint condition that can cause me to be immobile unpredictably, that i have to ring 24 hours in advance about cancelling a session.

I had explained i would have to call the morning before if i 'lock up' and she kept saying that if a session gets cancelled same day then if that happens twice you get discharged and if it happens where the appointment cannot be replaced or given to someone else then you lose that session, till i repeated myself and said that it would be beyond my control it is my disability after all, and i said all the way through that i have issues NOT being taken seriously, and she said that maybe they can make an exception... maybe... well maybe i am not looking forward to the next session, maybe she has been rude and upsetting and unprofessional and acts like she does not give a crap, not only that she is one of them that just sits and nods at you over and over and over again to act like she gives a crap!!! *sobs*

MORE important matter: (things have been removed to protect identifying people due to the seriousness of the points I have raised....) Disability Accessibility issue regarding only one premises in town: Well i got a response atleast about the Disability issues I put forward about our local towns post office and although things have been put into place I am awaiting for the reasons as to why it has NOT been put in situ...

I PUT FORWARD THIS COMMENT:

"On the site www.directenquiries that our local towns newspaper advertised so disabled people could have their say the post office have stated that all entrances have NO steps and are all level, as a disabled individual i am unhappy about this as everytime i visit town i cannot access the postal office and other shops as they have a step. More horribly, the step entrance is the only entrance that leads to the post office and I as a disabled person cannot access the post office due to the step. When i have been helped very difficultly into the shop in a wheelchair i have never been offered a suitable counter and have been forced to use the high counters.

As a disabled individual i expected them to have a fair report on their premises and i suggest they get a ramp, last time i was fortunate enough for them to have a small queue as I had to go through the exit (the shop entrance) and had to have someone dismantle the barriers to allow me to join the queue.

People do NOT realise how horrible and difficult it is for someone who is disabled, i have a mobility scooter that i now have to use otherwise i would be imprisoned in my home, this is due to the fact i developed my lifelong disability during pregnancy and my husband who is my full time carer has to push our child in the push chair and cannot push a wheelchair at the same time, people have thoughtlessly suggested putting the child on my knee whilst being in the wheelchair which we did try and had to come home due to health and safety and my joint problems, the disability i have affects my joints and caused immobility.

The scooter I use is legally for indoor use, pavements and crossing roads only, therefore is suitable for entering shops, I cannot enter the Sue Ryder Charity shop, The Post Office, Have difficulty entering Boots due to doors, The chip shop I cannot enter at all due to steps, the cafe up the ramp i have problems with the lack of space, Pound Stretcher would be more easily accessible but I have difficulty entering and moving around in there due to the layout of stock outside and inside the shop. I can however enter Boyes, and use their lift, and enter YMCA, British Red Cross, Bon Marche, Wilkinsons, and the majority of other shops that have ramps, flat floored entrances etc...

Thank you to those shops.

I suggest the Post office either change the step to a ramp or alter the queue barriers to allow entrance from the shop, as when the queue is full I cannot get served as I cannot join the queue and more people keep queuing where I could have joined if I was non-disabled. I would also like the offer of the small counters. Just because disabled people have problems does not mean they should be treat as a problem."

OWNER HAS RESPONDED:

HIS RESPONSE:

"My name here*, I have spoken to (name removed) the owner of the Post Office and shop next door who tells me he spent £4,000 making special arrangements for disabled people who are requested to enter the Post Office through next door and ring a bell for assistance. He also says there is no need to queue and a low level counter is provided. In view of this you may want to change your letter.

(FROM THE LOCAL NEWSPAPER EDITOR" I HAVE THEREFORE RESPONDED WITH THE FOLLOWING COMMENT:

"(NAME REMOVED BUT TO THE EDITOR OF TOWNS LOCAL PAPER, When i enter the post office via the shop entrance, there is no bell to press as far as people tell me, i then have to try and enter the queue to which only people in the queue move the barriers, and then i am never offered the low counter and made to use the high counters, if he has spent that much to help disabled people, i would like to know why it is not in use?

Or, atleast why staff have not had the courtesy to help me or advise me the many times i have attempted to enter via the shop and had to join the queue as customers alter the barriers, as well as having struggled to attempt to enter the step entrance.

The shop is also difficult to move through but i understand that is not the property of the post office, thus not their problem, i will however, next time i wish to use the post office, bring what has been advised to the attention of the staff and will observe if they allow this to occur and how they deal with this situation.

(yes I know I had misread and that the shop is owned by the post office's owner, therefore even more importantly they should put this to the attention of all staff in both areas)

I do suggest that this is brought to the attention of disabled people that wish to use the post office as i have been disadvantaged many times and NEVER yet been offered the counter in the corner by any member of staff who have happily not suggested this and observed me as i have struggled with the high counters to the extent i have had to have my fully abled husband take over."

JUST SENT SO STILL AWAITING FURTHER RESPONSE FROM THE OWNER...if i get it at all, what would be nice is a comment stating that they have re-briefed all staff so I can safely go there and be served happily... that would be great...

Additionally, the website has modified the post office accessibilty information...which is fantastic....they have been really helpful with every concern i have raised and have met the needs I have had...shame they don't own the shops as they can listen and understand and empathise.... .....although disability is a huge part of my life, i refuse to allow to have to be forced to fight with obstacles in town too, fighting this is enough!

OK, so i hope that they don't perceive me as a problem maker, but it is genuinely how i feel about such situations and it is about time people like me got help, i am NOT the only disabled person in town let alone the world, it is about time someone opened the world's eyes, isn't it?

All I wanna do is live, a happy life, a one where people accept disability and actually decide to be nice and helpful about it...

What is EDS? (My disability)

2010-03-21T13:55:00.001Z

Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

Please note: Some links may have been disabled as it is a quoted extract which copyrights all belong to the reference link above and at the bottom, all rights reserved to original copyright proprietor.

"Reviewed May 2006

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.

In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type, the hypermobility type, the kyphoscoliosis type, and the vascular type. Other forms of the condition may exist, but they have been reported only in single families or are not well characterized.

Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type. An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome, particularly the hypermobility type. Infants with hypermobile joints often appear to have weak muscle tone, which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in infants with the arthrochalasia type of Ehlers-Danlos syndrome.

Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars. The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles. Extra (redundant) folds of skin may be present as affected children get older.

Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably, causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb) during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe, progressive curvature of the spine that can interfere with breathing.

How common is Ehlers-Danlos syndrome?

Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, the combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide. The hypermobility and classic forms are most common; the hypermobility type may affect as many as 1 in 10,000 to 15,000 people, while the classic type probably occurs in 1 in 20,000 to 40,000 people.

Other forms of Ehlers-Danlos syndrome are very rare. About 30 cases of the arthrochalasia type and fewer than 60 cases of the kyphoscoliosis type have been reported worldwide. About a dozen infants and children with the dermatosparaxis type have been described. The vascular type is also rare; estimates vary widely, but the condition may affect about 1 in 250,000 people.

What genes are related to Ehlers-Danlos syndrome?

Mutations in the ADAMTS2, COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, PLOD1, and TNXBgenes cause Ehlers-Danlos syndrome.

Some of these genes (COL1A1, COL1A2, COL3A1, COL5A1, and COL5A2) provide instructions for making proteins that are used to assemble different types of collagen. Collagens are molecules that give structure and strength to connective tissues throughout the body. Other genes (ADAMTS2, PLOD1, and TNXB) provide instructions for making proteins that process or interact with collagen. Mutations that cause the different forms of Ehlers-Danlos syndrome disrupt the structure, production, or processing of collagen, preventing these molecules from being assembled properly. These defects weaken connective tissues in the skin, bones, and other parts of the body, resulting in the characteristic features of this condition.

Read more about the ADAMTS2, COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, PLOD1, and TNXBgenes.

How do people inherit Ehlers-Danlos syndrome?

The inheritance pattern of Ehlers-Danlos syndrome varies by type. The arthrochalasia, classic, hypermobility, and vascular forms of the disorder usually have an autosomal dominant pattern of inheritance. Autosomal dominant inheritance means that one copy of the altered gene in each cell is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected parent. Other cases result from new (sporadic) gene mutations. These cases occur in people with no history of the disorder in their family.

The dermatosparaxis and kyphoscoliosis types of Ehlers-Danlos syndrome, and some cases of the classic and hypermobility forms, are inherited in an autosomal recessive pattern. In autosomal recessive inheritance, two copies of the gene in each cell are altered. Most often, the parents of an individual with an autosomal recessive disorder are carriers of one copy of the altered gene but do not show signs and symptoms of the disorder.

Where can I find information about treatment for Ehlers-Danlos syndrome?

These resources address the management of Ehlers-Danlos syndrome and may include treatment providers.

You might also find information on treatment of Ehlers-Danlos syndrome in Educational resources and Patient support.

Where can I find additional information about Ehlers-Danlos syndrome?

You may find the following resources about Ehlers-Danlos syndrome helpful. These materials are written for the general public.

MedlinePlus - Health information (4 links)
Genetic and Rare Diseases Information Center - Information about genetic conditions and rare diseases (2 links)
Additional NIH Resources - National Institutes of Health
Questions and Answers About Heritable Disorders of Connective Tissue (National Institute of Arthritis and Musculoskeletal and Skin Diseases)
Educational resources - Information pages (11 links)
Patient support - For patients and families (4 links)

You may also be interested in these resources, which are designed for healthcare professionals and researchers.

Gene Reviews - Clinical summary (4 links)
Gene Tests - DNA tests ordered by healthcare professionals (4 links)
ClinicalTrials.gov - Linking patients to medical research
PubMed - Recent literature
OMIM - Genetic disorder catalog (7 links)

What other names do people use for Ehlers-Danlos syndrome?

EDS
Ehlers Danlos disease

See How are genetic conditions and genes named? in the Handbook.

What if I still have specific questions about Ehlers-Danlos syndrome?

See How can I find a genetics professional in my area? in the Handbook.
Ask the Genetic and Rare Diseases Information Center.
Submit your question to Ask the Geneticist.

Where can I find general information about genetic conditions?

The Handbook provides basic information about genetics in clear language.

These links provide additional genetics resources that may be useful.

What glossary definitions help with understanding Ehlers-Danlos syndrome?

arthritis ; autosomal ; autosomal dominant ; autosomal recessive ; carrier ; cell ; chronic ; collagen ;complication ; connective tissue ; deficiency ; dislocation ; elastic ; gene ; hypermobility ; inheritance ;inheritance pattern ; intestine ; joint ; kyphoscoliosis ; molecule ; motor ; motor skill ; muscle tone ; mutation ;pattern of inheritance ; prevalence ; protein ; recessive ; rupture ; shock ; sign ; sporadic ; symptom ; syndrome ;tissue ; vascular

You may find definitions for these and many other terms in the Genetics Home Reference Glossary.

References (14 links)

The resources on this site should not be used as a substitute for professional medical care or advice. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional. See How can I find a genetics professional in my area? in the Handbook.

Reviewed: May 2006

Published: March 14, 2010"

Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

Everything in my life hurts!

2010-03-21T13:44:00.000Z

http://www.youtube.com/watch?v=3LhNHSVSJDA

The above is a link to a video about my EDS, Ehlers Danos Syndrome, this is part of Hypermobility Syndrome.

Please watch.

.. have just fallen.

2010-03-20T13:17:00.001Z

Well, I was OK,

I have just fallen, and really hurt myself, severely, and I am on sooo much meds already.

My husband was taking a shower as I was on this laptop sat on the settee and the baby was fast asleep in his cotbed, and he wasn't going to be long.

My mobile rang, I tried to do what I get help with, but due the lack of promised GRAB RAILS I fell over, knocked a stool over, nearly broke my plaster hand jewellery holder that I am painting and was a present from my husband, and I grabbed onto the bed (all this is short distances away from each other as we are forced to live in our living room still. I used the bed to pull myself up from the floor and grabbed my phone which was on charge on the other side of the bed where the sockets are.

It was my grandma, my great. grandad whom i love sooo much and really care about is still really ill, having been in and out of hospital I don't know if he is out right now or not, she was trying to phone my Auntie instead, she asked after baby and i briefly spoke to her as she had to go.

Husband came down and helped with everything else.

I am so fed up of hurting myself in doors and NO RAMPS for me to use my scooter to drive out, so I fall or hurt myself stepping out of the house (little step as opposed to stairs) and I shuffle out but it hurts sooo much!

When will we get the ramps and grabrails THEY HAVE nothing to do with the getting of the stairlift so I can understand the bath lift being postponed but these could be placed BEFORE the stairlift, which I get ANOTHER assessment for it by the SAME O.T. in APRIL!!!!

The only difference being is a gentlemen from a specific company is coming to assess.

I am fed up of them making this about baby too as they are being ridiculous now, they say our baby is in danger being near the stairlift and we cannot but a safety gate at the bottom or top of the stairs.

I say solution is easy, we are good parents, we are not stupid, I have serious qualifications and OH remember that assessment from child social services themselves???

We put the baby gate in the corridor and we watch the baby upstairs and have safety devices in place for every room, there are doors on the rooms and simple things like putting handles upside down can be done.

NON-Disabled parents/single parents would face same issues, as stairs alone are dangerous incase falls happen.

So why attempt to stop me from getting a stairlift with stupid IFS about our son??

They say that he needs a little rail as children need to be independent and be able to climb the stairs on his own, YET they are pushing us to still have a bungalow,

OK, so lets talk about baby, there are NO STAIRS in a bungalow so how is he going to be independent?

From what they say about bungalows anyway as you can watch babies easier, that would mean all single parents would be bad parents unless they had a bungalow and that makes no sense.

Right now he is near ducks, swans, a lake, geese and a shop and a school and families with young children, with easy walking distance to the town. With 5mins away distance to his surestart centre, twinkle times every friday, they want to stop him having access to that? Where all child services occur?

They want to change that so he is in a society full of elderly people? Possibly away from town, definitely not near a school or the lake, and we are near the school i went to as a child and would like him to go there.

They are ignoring other things too, like the fact we have friends and family around here, near the surestart centre as already stated. We have bills to pay from moving in, the BT charge for putting a landline in, £122.50, still owed, the amount to pay as SKY services lady cancelled our sky talk without my permission then hung up on me so i had to phone and they said NOTHING was cancelled, so BT has took £80+ from us as they covered the few months instead, when we thought we had free calls.

BT still hasnt sent us the itemised call list to send to SKY to claim that back, plus issues we have had with gas and electric an change of address??

Royal mail charge PER name!! So we would need 3 name changes, my husbands, mine, my businesses, actually 4 now as some send things to Baby for some reason in his name....

And we would have to notify several places/people including carers associations allsorts.

I cannot cope moving anyway as I cannot do what i could before, and its hard to even pack, and we have bought decorating wallpaper and things for this house now too.

PLUS several hundred other reasons that WE CANNOT move, we dont want to move, we cant cope moving....

YET they keep making us out to be bad parents by making up actions we would never do that would put our son at risk in association with the adaptations we have been promised.

Its ridicuous, and we are sick of it.

If it continues we will be forced to look into changing our O.T. she is the same one that ignored all my needs, wrote what was NOT happening (false information) and harrassed me so much to sign it, I kept saying NO.

She then asked again over the phone hundreds time too before, I said NO, and explained facts in regards to my disability and explained that at that time I was suicidal and i want to be taken seriously and the documents lie as they say I can do things I can not do so by signing them it will make my life more difficult and worse as its all false!

She said the commode could be a life long solution to not having a toilet, she said i could have a bed bath or strip wash (cannot do that due to positioning and immobility) cannot wash my hair at all!

She said lots of other things, so after i sobbed down the phone to her, will call her C.S. she just said will talk about that when i see you tomorrow.

She came over with another person NEVER talked about any of that and tried to force me to sign it again, and having explained to her all the facts that contradicted everything she had said, she said to me, which cut me up to the extent my head got heavy and i had an adrenaline rush and wanted to scream and cry, she said well which bits do you disagree with.

disagree with??

I had proven it was all false, i never disagreed, i was explaining FACTS!! Then she scribbled on one of the sentences of many, she spent an hour atleast trying to get me to sign it.

I did not.

She was also the only one that brought up me seeing the psychiatrist and i assume she was trying to use that to prevent me from getting services as thats all she tried to do all meeting, and i stated the truth, its not psychosomatic, i even told him i was suicidal and he did NOT want to see me again, her amazing answer was, oh.

I NEED help, i need these adaptations and C.S is still saying i may NOT GET a STAIR LIFT even now. I am sick of this. She keeps saying i am going to get better and insulted the specialists at hypermobility.org as they told me i had the EDS version of Hypermobility syndrome, but how dare they?

They obviously know nothing about Hypermobility syndrome, there is NO CURE, if i get better it will only be for short periods of time, even if i managed to walk the stairs I WILL ALWAYS need THE STAIR LIFT as there will be periods of time for the rest of my life that I could get stuck upstairs without the stair lift and be immobile and severely disabled again, i have it severely.

They have awarded me a stair lift TEMPORARILY and I can see coming, that if i have a good patch, the will remove the stair lift, then when i am having a bad patch again, i will have to re fight for one as i can see myself stuck upstairs, not being able to attend anywhere.

They have no idea about HMS they say the hypermobility.org specialists are not trained, not doctors, and dont and cannot assess me individually and that i need a individual assessment and that i will get better.

After all that THEY SAY I WILL GET BETTER so... what experience do THEY HAVE to state such things, when slating people who KNOW MORE than them about it as some people in hypermobility.org HAVE HMS!!!

It is ridiculous!

We are just putting up with it all so I can get the adaptations I need, but they are NOT coming FAST!

I STILL HAVE NO COPY OF MINUTES, NO CARE PLAN, NOTHING I WAS PROMISED FROM MEETING!

*Sighs*

Well atleast I made it to being a mam! But...disabled for life too? It was all worth it!

2010-03-20T12:46:00.001Z

Well atleast I made it to being a Mam, but disabled for life too? It was all worth it.

I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome.

I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours...

I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily.
Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse.

Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centre's twinkle time every friday and he loves it!

His dad, mu husband (and 24/7 carer) but more loving husband and loving father, adores him, he helps us sooo much so we live as much of a normal life we can until we get the much needed adaptation help we have been promised by social services and are still waiting for.

My husband and my son are my life, and once we get the adaptations, we can have routine and normality as the disability wont pose as a problem as we will never again be reminded of it by the problems we have without the adaptations daily.

So our life can be normal and we can have a good quality of life, but we are having to wait such a long time for the help, they shouldnt be postponing the ramps and grab rails until i get the stair lift as they are postponing the bath lift but that one makes sense, but i need the ramps and rails now!

Will be phoning to try and sort things this upcoming week as we cannot get any help on a saturday, only from carelink in an emergency and carelink are fantastic!!! FANTASTIC!

Much love to everyone/anyone who is reading this and if you suddenly develop SPD, get it looked into, do not be fobbed off by them saying it is psychosomatic without any psyciatry experience nor any grounds or professional assesments to go on, as i never had any help i was supposed to have as outlined by the NHS in the book given to first time mothers and on the internet.

We have suffered enough, we are making our life as good as it can be until we get the much needed adaptations.

My hubby treat me to a new wedding ring and it is beautiful, it says Love Forever and everytime i look at it i read that and feel happy.

We are loving this and cannot wait to grow old together, so many good memories to come, i know there is always bad right now we share, but we prefer the good as would anyone and we cannot wait to be old and sitting still strong, speaking of the good memories we have shared.

Love is bliss.

The other gorgeous treats I have now from my husband, to cheer me up and replace the wedding ring and engagement rings i had before that do not fit me anymore.

(I gave them away to a dear friend as a present as she is one of my bestest friends and i love her like a sister).

Here are images of them, the wedding ring image is at the top of this blog.

My new cluster 15pt diamond engagement ring, I have never had diamonds before and this is such a surprise and is gorgeous, I feel so blessed.

This is my new Wedding Ring and it says LOVE FOREVER and everytime I look at it I know how lucky I am to be loved by my soulmate, the one person in the world that makes everything feel alright and safe with just one hug, the wrapping of his arms around me, snug, and safe, and warm, and protected.

The man who has dedicated his life to being my 24/7 carer to make my life easier, I owe him the world. I love him so much. He and my son are my life.

My 'MUM" ring, now I know I prefer MAM to MUM, as that is the word I have always known, but I accepted MUM in this instance as this ring is the most beautiful symbol that I can wear with pride, to remind me of my motherly love, at the worst of times, when I am in hospital without him, this represents the love my son has for me and I have for him.

I have had a miracle occur, and that is my son, I have had a child. All those mothers day, passing, me sitting there sometimes in tears, sobbing, wondering when I can make a life with the person I love, the emptness was so huge and for so long, I waited, the quietness, I would stare around the house and imagine a little child, girl or boy with a huge grin, running about and playing, and wondering when I could have a child to share mothers day with, and a fathers day for my husband.

I finally had my first mothers day and we painted his footsies and have prints now, some show his skin creases and everything on silk like white fabric in black fabric paint and the others are on paper, yellow feet and some green feet lol then we did our hands, my right hand, husbands left hand, and baby's hands in the middle and two of them, second he scrunched his hand and the paints curly and its lovely.

It was one of the top days of my life and will stay with my wedding, engagement and the birth of our son, in our hearts.

My husband also bought me some really nice earrings to spoil me, it was a great day.

I have a choice from alternative styled earrings that are totally me and some other hearts, stars, and pink diamonte styled studs too, so in total I have 7 sets, and it's nice to finally have the choice.

These are the others I was talking about.

Thank you for letting me share all of this with you and when I was in the store on the scooter I bought myself I felt like a princess choosing all these lovely things, we got the baby a baby's play gym too, so we can play with other things whilst being stuck at home in the living room.

We are just trying to focus away from the negativity and stress occuring in our life, and although we are struggling through still we have each other and it has been really nice to focus more on each other and stop the stress interfering as when we are stressed and not coping well, in all honesty, we dont like how we are, and who we turn into, miserable and stressed individuals, so we have put a stop to it and stopped caring right now about anything other than what makes us happy.

In all fairness so much has been happening and causing misery to our life, although we had hope since we were awarded the adaptations, we are still NO further forward and feel let down, so we are focusing on each other.

Life can be good.

We just wish that they would do the ramps and grab rails now so we can stop being reminded of my disability so much and I am being forced to do things that are hurting me and making me poolie/ill. severely ill/poolie.

We need help.

....try to think positive:

2010-03-04T11:50:00.000Z

Meeting was really upsetting and traumatising, didn't really cope with it too well and it was really difficult but we're finally getting some help.

I just hope they dont go back on their word.

We are supposedly getting a temporary stairlift and i am up for review later, I know even though im disabled for life, but if that is what they need to do it's ok as i am using it as goal to try and get better for baby, even though the odds are against us at an 80% chance of damage during physio.

Should be getting grab rails all over to stop me falling, hate falling over, ramps at both doors and a bath lift too.

Just really hope they don't change their minds...

....wont be happy til its all done and definite as been messed about way too much now.

9 months was long enough with my suffering....

I need to pick myself up!

2010-03-01T10:48:00.000Z

"If I hadn't made me, I would've been made somehow, If I hadn't assembled myself, I'd have fallen apart by now, If you let them make you, they'll make you paper mache, At a distance you're strong, until the wind comes, then you crumble and blow away, ... but if you really want to live, why not try and make yourself?"

...some nice lyrics to hear this morning.....

need to pick myself up and move on from those who try to rip me apart, they're only successful if i care about them so if i stop caring... then thats a new day... why did i care in the first place, if they dont...

just hope things go well but i will never know unless i fight this fight, and i am sure there is fight left in me...

What is there left?

What is there left when you make me a jigsaw?

Pieces of me stolen away so I am lost and sore,

It is no puzzle that this makes you happy,

You are stealing away peoples lives and reality,

'Till they have nothing left.

Why are you really keen on hurting those already down?

Glad you are enjoying this act of a clown,

Careless minds and careless times,

When you kill people inside with your thoughtless crimes.

You need to know and need to learn,

that mistakes happen but people can burn

When you scapegoat others and feel free from blame

The guilt creeps up, things remain the same.

You're stuck.

Stuck with the hidden thoughts of what you have done,

Which consequence will force you to be never alone,

until you realise what you are doing,

and stop and change you soon.

Life is fragile we all are ice,

Can crumble with one roll of a dice,

Don't gamble with people's lives,

As they won't last long, not all survive.

Can we?

- My poem today written about how i feel.

...meetings...

2010-03-01T10:04:00.000Z

Well the meetings today....

I have lost a family friend she has died,

i have the meeting today about our life and whether we can have the stairlift and adaptations that we need, and i had the police round yesterday about the hospital incident and they say I have to complain directly to the hospital.

I have been let down and personally attacked unfairly by a seller of *product info removed* items who feels it is appropriate behaviour to slander and abuse people that state the truth (when something goes wrong) with what she sells.... what is the world coming to....

...I am going through enough and she knows this, to personally slander and attack a 'compliment' i left on her shop is unprofessional especially when she is defined as 'customer support' for the whole shop community site and to have had the offensive remarks I have had since I first purchased from her I never knew it was her on the ebay site and she made me buy outside ebay on her personal shop site and I am not aware of any reduction she claims to have made and I do not understand what she is trying to do.

Hopefully people will see that she is offensively defensive when people stand up and say 'i did have a problem but it was solved' and in my eyes i thought it was solved, and in all fairness I have much more to do than to deal with her abuse.

*Person's name removed* and other people I have recommended *shop name removed* to I take back all recommendations due to this behaviour of the lady that owns it.

I am sorry and don't want you to go through what I have and husband is seeking advice from trading standards and legal advice as he is unbias witness to it all.

He has also pulled out from starting a hobby shop on their site due to this maladaptive, offensive, slanderous, unprovoked and unnecessary behaviour that anyone can see that is what it is.

She has stated false information in her reply that was no even in context with the original comment and situation.

I need to stay strong or I will just break.... I already want to end it and I couldn't cope if they say no theyre not helping me to live a life or have any quality of life at this meeting today.

Malicious people put the icing on the cake when a beautiful, kindhearted, lady I have known since 7 years old has passed away too....

...anything else to push me ???