Welcome to my PGP/SPD blog: Links and Info:

SPD is Symphysis Pubis Dysfunction.

PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)

I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.

The main websites I have found for you to look at now are:

The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:




(This is a charity support group here to help you as a sufferer.)


(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)

More websites you may find helpful:

NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.

Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


Link about DSP and SPD/breastfeeding.


More info on SPD and a link to a support forum to talk to others about SPD.


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.

Another suggested link that my be helpful: (Scotland)


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)

http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:


It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.

Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)

We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.

Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!

Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk

(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)

Please enjoy my personal story in the form of a blog below.

Friday, 3 December 2010



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.

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...

Wednesday, 24 November 2010

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

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.

Monday, 15 November 2010

I am Disgusted at the hospital lying again...

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!!!

Friday, 5 November 2010

Headaches, stress and identity theft.

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 :)

Friday, 6 August 2010

council worker hurls abuse over phone!

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!


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!


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.....!!!!!!

Sunday, 25 July 2010


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.
Name & address supplied."

"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!"


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:

Hope this helps you understand better!

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....


Friday, 9 July 2010

Question: lack of disability understanding:

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:


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
-Community bus/transport


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.

Thursday, 8 April 2010

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

... 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...  


"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."  



"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.


"(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...

Sunday, 21 March 2010

What is EDS? (My disability)

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, t
he 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 ADAMTS2COL1A1COL1A2COL3A1COL5A1
COL5A2PLOD1, 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 ADAMTS2COL1A1COL1A2COL3A1COL5A1COL5A2PLOD1, 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 

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

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

  • EDS
  • Ehlers Danlos disease

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

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?

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