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:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

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


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(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


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


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


http://www.madmums.com/GH_ShowArticle~HID~147.htm


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

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


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


SPOON THEORY:


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



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.


Awareness:


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.

Saturday, 19 December 2009

One step forward, then pulled back by a noose around my neck...

..A noose that is unwanted and put there by so called professionals trying to help, who are just making things more complicated and causing more suffering if you ask me. (Don't worry was merely a metaphor.)


I finally gained access to much needed services, i.e. Pain Management Clinic and Physio experienced in Manual Therapy, when we receive the initial assessment from Social Services, which *surprise, surprise* was based on some false information too!

The ex consultant of mine and ex midwife accused me of 'exaggerating' my condition and stated that I sought access to Adult Services and additional help RE: my condition, without consulting them.

Do these people NEVER write anything down? I asked, I begged, I screamed, I cried, I gave up and tried to help myself, as they refused me the help I need.

So now I hope they are happy as Welfare have defined our young son as "a child whose vulnerability is such they are unlikely to reach or maintain a satisfactory level of health or development without the provision of services" when they have stated we have not failed to provide appropriate care at any time for our son!

They have based the above on the fact that I cannot walk and I am requesting a stairlift (well wouldn't anyone when they have no access to upstairs, at all? What good am I to my son stuck upstairs and cannot get down? I have been there before!) and on the fact that I am accused of 'exaggerating' and making up that the condition is this bad, therefore it is psychosomatic...

What world are we living in today?

People capable of looking after children, people with the most experience in childcare possible, being treat like this and judged falsly like this and now have to have 'visits' to make sure we are looking after our son 'appropriately' when there are people out there who need these visits and cannot look after children ( not always due to their fault either ) and they are not getting the help they need. Why? because some professionals make false accusations based on no evidence and therefore time is wasted on people who can look after their children etc...

I am so frustrated at all of this. It is ridiculous, I really hope my ex consultant is pleased with himself, I really do, and I hope my ex midwife is pleased! There are some cruel people in the world and they need to look at their actions not bully and accuse others!

I just don't know how it got to this point, as I discussed everything with the professionals and they blatantly refused me the help I deserved when pregnant, as stated in BLACK AND WHITE by the NHS THEMSELVES in many documents etc, therefore they have made my condition worse, and then to accuse me of 'exaggerating' well I guess I enjoyed losing our home, our jobs, not having access to food, struggling, no cooker, no fridge/freezer, having to move when heavily pregnant and pay for lots of things including a phone line due to the move etc, did I?

Are these people for real?

Why don't they start helping me and stop accusing me! That would help.


They accused me of accessing services without consulting them, I begged them, many times, they refused referral to pain clinic and manual therapy physio, so what was i suppose to do sit back and rot? I needed help, disability aids, to help me get about the house etc, I couldn't sit back, but oh yeah, they think i made it all up....


Well I am going to see the Psychiatrist and I hope to God I really do that he/she can talk some sense into these so called 'professionals'.

And shelter line have sent me the paperwork for legal help, finally.

We are pleased to have, their much needed help.

I am also waiting for ICAS to contact me back so I can start this Formal Complaint finally about my ex consultant and midwife, everything is logged in this blog anyway, so there is no excuse for me to miss out any relevant information by accident now...

On a more positive note, social did say a positive thing about me:

"After speaking to (my name here) myself, she presents as being an intelligent and articulate woman. She does present as having a lot of pain, and in my opinion (my name here) perceives this pain as being very real and causing her a great deal of distress. I am unable to comment on whether her pain has a physical or psychological cause, however this does not appear to be having a significant impact on (my name here)'s care for (my sons name here). (My husbands name here) presents as being a good source of support to both (my name here) and (my sons's name here), however he would benefit from being subject to a Carer's Assessment in his own right."

We did request one, just never got one.

The assessment also states i need to be referred to adult services, i tried to refer myself and they told us where to go too!! SO now I need to be under Adult Services do I???


It really annoys me, it really does, and I am sick of crying because of them all!


They want us to go to surestart, we do too, but how can I when I cannot have access to a shower etc. and be presentable, would they go to surestart in my state? Doubt it!


I cannot wait to get a stairlift and get my life back on track so I can give our son a bedroom, like he has the right to have, we can have a bedroom, like we have the right to have and I can have much needed access to a toilet, bath/shower and have the ability to get downstairs in an emergency, well as well as the ability to get upstairs in the first place!


But... will this ever happen? And will it be able to happen sooner rather than later? Our son's growing, I am never going to be able to bath our newborn at this rate (in his baby bath as its easier to fill upstairs and makes things complicated when my husband tries to bring it down etc).


The lack of needed physical help is making enjoying and bonding times a chore!


Let's see where things go from here, I have no hope now that things will be resolved before Christmas...




Friday, 18 December 2009

So i contacted a company in charge of many PREGNANCY, MOTHER & CHILDREN magazines:

For confidentiality purposes and for respect of identity protection, personal info about myself and the lady who replied have been removed. They are irrelevant... (my emails are black text, hers are purple.)

Things in brackets are where I have removed content, think you'll see these clearly:

My last e-mail reply:

--------------

"FYI,

I am not a sales person, i am not selling anything, especially my disability, i have suffered for a long time and i don't want any other women to go through what i am going through and i certainly was not 'pitching' i understand that you deal with many people looking to make lots of money to line their pockets but i am proud to state i am not one of them. I have worked for my money, helped charites, worked for the NHS as a L.D. Nurse cadet, with all the fantastic disabled children and adults the world decide to shut out.

I was trying to contact magazines that state they care about women and their pregnancies but i see now that maybe you just print what you think people want to read and want free stories etc, i was happy for my story to be printed freely and nothing negative either, i prefer to be used as an inspiration for others to help them cope, thats why i was in the (challenge name here: aimed at inspiring young people to start their own business in the recession) challenge and why that article was sent to you about that too. My business did a lot of charity work and i am proud of who i am and where i have come from and i am proud to say i don't care about all the crap i have in my home, it may not be much, but i could live without it, what i cannot live without however is help when i cannot walk, food, access to a toilet and basic hygiene facilities that every person should have access to.

I am asking you to raise awareness about severe SPD prevent suffering of millions of women who don't know about it, I could be your sister, your mother, your daughter, a friend or relative as this can happen to anyone, would you sit back then? I doubt it, i think you would research severe SPD and you would find rarely anyone knows much about it, so would posting a short article on it, and how to manage it be such a disadvantage to your magazine?

I think as a customer, as an individual and as a disabled mother who has suffered and is still suffering, that it would help people to have some knowledge on SPD and how to manage it, so when their mothers, sisters, daughters etc get it they can help them, and we dont have to state NHS professionals dont know much, they will find that out for themselves, but when they do, they can say because of 'such and such' magazine i know what shes going through and this is what needs to be done so her baby doesnt die and she doesnt end up disabled for life.

Now what newspaper or other media area publishing their story would fail to mention where they heard that from, how they knew about SPD???

If your a magazine about health and safety of pregnant women surely it would be hypocritical to deprive women of knowledge that could change their lives, a few black and white letters on a small area of one page in one of your magazines could raise so much awareness, help so many women and their children be safe, now i dont have the opportunity, the voice or the magazine myself to do this, hence i am fighting for women everywhere to get the understanding and safety and knowledge they deserve.

I am no saint, I am not a hero, I am not a sales person, I don't want money, I don't want to sell anything, I am just a woman.
I am a woman who has suffered, and all i want is other people to not suffer like I have.

If you wished to help further you could help stop my suffering too, by mentioning my need for a stairlift, not even asking people to help.... but that is at your descretion.

Just think about it.


Kind Regards,
(My name here)
Sole trader business name here
(website address here)
T: (tel number here)"

--------------------

*note: i did send a reply before the one above but found myself begging her to raise awareness of SPD etc and did not explain that i am not pitching etc and certain things in her e-mail which was ignored, needed to be addressed.... so i sent a more appropriate and honest one above, a one that i wasn't holding my tongue on to please her, as I feel SPD is serious.*

--------------

"On 18 Dec 2009, at 11:12, (lady from magazines e-mail and name here) wrote:


Hi (my name here),
Many thanks for getting in touch and congratulations on the birth of your son. I'm so sorry to hear about your SPD and all the problems you've encountered. We are very aware of SPD/ PGP and cover it on an annual basis, although it tends to be more of a Q&A piece than a first-person story. I don't think your story would be quite right for our publication unfortunately, but best of luck pitching elsewhere.
Incidentally we don't pay for stories and I'm not sure the other parenting titles do either (although you may want to check), so you may want to consider getting in touch with the women's weeklies who do tend to pay.
All best wishes for the future,
(lady's name here)

(lady's name here)
Features editor
(magazine name here)
E-mail: (lady's email and name here)
Direct tel: lady's phone number."
---------------------------
Don't think i wrote clearly enough to get my message accross as i got the above message:
----------------------------

14/12/09 01:25 Subject of email sent: URGENT: I have a story that may shock and be of interest to you?

Email:

"My name is (my name here) and I have a story that may shock you and be of interest to you.

I am 22 years old and my pregnancy caused me to be disabled.

Blog site is http://pgpandspd.blogspot.com

I had endometriosis and polycystic ovaries and was told i cannot have children. I conceived on clomid and became disabled. Attached is an article about when i first found out i was pregnant and started my business (my business need not be mentioned in the article...

There are lots of things you can miss out of the article which will be fine by me (thats at your discretion) i just need this help for stairlift and need to help others about SPD.



Before I go any further my reasons for contacting you about this story are serious:
I wish for no other individual to go through what I have gone through, to prevent more individuals from becoming disabled, to raise awareness about the pregnancy related condition and I am desperate to raise a minimum of £4,000 for a L-shaped stairlift or have one donated.

My story may make you cry but know that I am coping as best I can and remaining optimitstic for our miracle child, our son.

The story summarised below, in which I will enclose a link to my blog, where there is everything that has ever happened to me about SPD and associated with SPD.

First of all SPD:

1 in 4 pregnant women get SPD : page 77, section 9, problems, NHS book given free to all 1st time mothers in the UK.

SPD is symphysis pubis dysfunction, it is where the pelvis misaligns when you move by millimetres or centimetres, it can develop into DSP, Diastasis Symphysis Pubis which unlike SPD can be identified by X-rays and scans.

5% of women according to acpwh get SPD severely and need a wheelchair (All statistics and facts are on my blog with links to accredited info) I am one of the 5%.

NHS, NICE guidelines state 9% of women suffer from SPD from conception,

This is my story.

I woke up around 14/16 wks and could not turn in bed at all, i was diagnosed with SPD at 16 wks, was in a wheelchair at 20 weeks.

Was made homeless and had no access to food during my pregnancy, had to close my business on the 18th july and my husband became my 24/7 registered carer.

I am completely disabled due to SPD and immobile.

I have had no access to a toilet, shower or bath since JULY 09. I cannot get upstairs, we are in council house now.

I use a commode and i am lucky if i get to a relatives once a wk for a shower (have to use shower seat aid) but it hurts everytime as there is not enough room for my legs to swing into the tub as sink basin and radiator is in the way.

my ex consultant made the allegations that my SPD is psychosomatic and my midwife has been horrid to me, stated early on that i am putting me and child at risk (during pregnancy) on a debt collecting visit from hospital for £10 for a tens machine that the hospital agreed i can have use of for free, she never did any antenatal checks and wrote down the debt collection as antenatal check.

i ended up on the bathroom floor at one point in hospital as nurses failed to use a hoist and wouldnt help me incase they hurt their backs.

i changed hospitals and the delivery was great, needed an emergency c-section but care was great. given new consultant met once and would help me.

after care was abismol and offensive opinionated remarks were put in my postnatal notes, the consulant discharged me without notification and because of ex consultant i need to see a psychiatrist and social services children in need are involved.

an ex O.T from the hospital suggested i showered at the leisure centre if i struggle bed bathing.

The prolene stitch from the stitch and beads have been left in me and was told would be removed, now i have been refused surgery and its non dissolvable and wont migrate. The nurse said its not like they have left a glove inside me.

i have been passed from pillar to post, treat horribly, isolated, insulted and now all i have is a physio and O.T whom are lovely but cannot help me until they try to get me an MRI scan...

The social O.T assessed me for a stairlift but needs confirmation that my condition is likely to be long term (which it is) but no one is sticking with me long enough for them to gather the evidence.

My stairs are L shaped and thats the problem.

Much more shocking incidents have happened and comments have been made and me and my husband have been made to suffer and still are suffering. I am desperate to raise much needed awareness as many health professionals do NOT understand or are aware of SPD and this needs to be changed as 1 in 4 women get SPD.

I have had to do much research and all can be found on the blog, theres about 48 blog posts and although it sounds many it shouldnt take too long to read.

I am prepared to be photographed for this article and you are the first magazine i have approached, i bought (magazine name here) all the time and still do and hope that you will help me to raise the much needed awareness, to help women now and help us get the stairlift we are so desperate for.

our son was born 20th november and SPD has ruined lots of motherly privilidges other women will have and i am deprived of.

I am on 200mg of morphine daily and have paracetamol on top.

some posts may be irrelevant to the article but please let me know what your feelings and/or thoughts are about this as i am not contacting other magazines unless/until you decline the article.

I am happy to discuss what content you wish to post too.

Blog site is http://pgpandspd.blogspot.com

Thank you for your time.

(My name here) x

Kind Regards,

(My name here)
Sole trader business name here
(website address here)
T: (tel number here) "


----------------

Right, I don't know if this lady will respond again so you may not hear anything more of this, but I have tried to raise awareness of severe SPD to magazines and certain TV news departments.
All I can do is apologise, and I hope that someone from the media will decide to use their voice to help women like me and you and the 1 in 4 that get SPD.
Mentioning severe SPD also helps minor SPD sufferers cope, we need a voice, we need to help, and we need it now.
x

Monday, 14 December 2009

Enough is enough!

Why do they make it such a stressful experience when you call G.P's?

They don't take me seriously, do they really think I am crying for nothing and lazy as opposed to actually being housebound and in a serious amount of pain?

I'm fed up of this treatment and I will no longer be putting up with it, I am struggling to cope with my pain without meds and I am sick of not being treat with respect or taken seriously by them, enough is enough!

Even if it means I now have to write formal complaint after formal complaint and document everything, something seriously needs to be done; I am not prepared to be disabled for the rest of my life and I have the right to help and to not be made to suffer like this.

I am crying as I need their help, so they should be helpful, instead of saying inappropriate opinionated remarks that there is no need for, are unjustifiable and unprovoked.

Today I am proud to say that I finally cut myself off and stated that I do not have to justify my condition or my difficulty getting to the surgery when they are already aware of it. I need a home visit on Wednesday and if they refuse then I won't get seen and will be made to suffer again and that is not my choice, that is their choice to refuse me the help I need.

So hopefully they will sort things out for then.

I am sick of them acting like this is all one big joke, it may be for them but SPD needs to be taken seriously, it has ruined many things for us in our lives and is continuing to do so yet we stand proud that we remain fighters and optimistic (as much as we can be) and take on any obstacles thrown at us.

They may perceive me as a burden or a problem or a complicated case, yet they have no idea what we have to live with every second of everyday. They should be thankful for that and how lucky they are.

I am merely a young lady that should not be going through these problems at 22 years old and SPD may have ruined lots of things for us and made us suffer but the Dr's and staff and health professionals need to open their eyes at how much they are now causing us to suffer!

I'ts about time SPD was taken seriously even if they continue to refuse to take me seriously.

Todays the Day! Still have stairlift issues though....months on...

Finally our council tax issues are resolved, may have taken over a year but thankfully all is sorted now.

I am in absolute agony today, the front and back of my pelvis are just excruciatingly painful today :(

Got a support cushion from the internet to hopefully help me when I am sleeping, help with my position and if I ever get the chance to restart breast feeding it will be really useful then too.

Keep phoning the Dr.'s as they keep prescribing me only 2 days worth of Morphine and I constantly run out, which is why I am in absolute agony today, it's really hard to have a prescription written at my Dr.'s and I am still waiting for a Dr to call me back so I can explain to them what I have explained over and over again to the receptionist already, how much pain I am in and how desperately needed the Morphine is, you'd think they would give you a bigger bottle wouldn't you? I am on the slow release tablets too but they are not doing much on their own, the Oramorph and paracetamol help with it to reduce my pain, does not eliminate the pain, but makes me comfortable most of the time.

I am still trying to raise awareness of SPD and thinking of ways I could do that.

My husband and I have also been talking about how we can raise money for a stairlift, doesn't look like we will be able to and we are not prepared to beg, its not really anybody else's problem so we don't expect people to want to get involved anyway.

Phoned someone today who may have in depth community care advice that I may benefit from so still waiting for them to call me back.

Will wait and see outcome before I discuss that though.

*fingers crossed* again... just need to be taken seriously and need help desperately... and what worries me the most is that 1 in 4 women get SPD so anyone could be put in my position! Anyone!

Forget it! I give up....

I hate that I am on 200mg of morphine a day and I am still in agony and my SPD was supposed to start to get better and mines just getting worse *sobs*

I am sick to death of malicious people on the internet that are closed minded and judgemental when you try and help with a situation and suggest something that may be of use in a reply to a wanted post.

If the suggestion is not of use then merely ignore it or state so! There is no need to judge me or make false allegations as you do not know me nor what I have to go through everyday! I am sick of having to justify myself to people and hope that this person is very proud of themselves! Especially when i sent an apology and checked the rules with the moderator by messaging them, this person slandered me and made false allegations to the moderator to bully me and have me removed without knowing anything about me and failing to accept i was actually genuinely trying to help.

Unlike them the internet is my main point of communication and contact as I cannot walk! Charity shops are not too wheelchair friendly and they just do not realise how lucky they are!

If they are trying to help children in need thats fantastic but to accuse me of trying to make money to line my own pockets when that is NOT the case is just closed minded and judgemental and not something that I would expect to come from anyone who genuinely wants to help people!

What happened was they asked for something in an online post, and i said i am sorry i cannot help but i do know someone who is selling one for cheap, he is my husband , here are their contact details, (which i am not responsible for him or his actions which i am not).

Was merely a suggestion like i stated as well as apologising for not being able to help them further and if they are doing what they say they are doing i am sure they can just state, sorry its for a child in need and your suggestion is not of use, please keep an eye out for anywhere that may have one (and i would have been delighted to help if anything came to my attention).

This was not stated but he is trying to raise money to get me a stairlift as i am still stuck downstairs and treat extremely horribly please see below about this as this is another story!

They could be lying about it in all fairness for self gain for all i know but i don't throw accusations around like they do and i have sent justification for everything i have stated, to prove what i am saying is true! What they did is just like me sending a message to the moderator accusing them of wanting toys and bikes (like they have) e.g. nintendo DS etc to sell or for xmas presents for their children, but i dont know this and cannot prove this therefore i do not accuse. I just hope that they are genuinely trying to help people but to act like that towards me can be inferred as them being furious as the email was not a free expensive item like they requested and as revenge they take it out on me.

I also noticed they want things and don't offer things and want things for boys aged 4-5, clothes, coffee table no glass, boys bike, nintendo DS, TV Bracket, Guitar, wooden high sleeper bed, nintendo game cube games, (hmmm.... yeah i really believe her now, sounds like she's kitting out her sons bedrooms if you ask me and not wanting an item for a lil' girl with special needs!) I just dont get why she didn't accept my apology and say thanks anyway, if its for a little girl with special needs surely she would be willing to discuss it, not start insulting people!
It was the first time i sent a message of that nature and even asked the moderator myself to let me know so if it is against policy i would not do it again!

She also publicly sent everyone in the group my husbands personal phone number which I assume breeches the policy of the group in a more serious manner?

Yeah, just hope they are satisfied with their dehumanising and malicious actions today. (People that treat people like that get off on it so I doubt they even feel the slightest remorse for me or feel guilty about what they have done!)

Just a coward hiding behind a computer screen because they can, unfortunately I respect people and I am keeping this blog confidential, or I would have been inclined out of anger, frustration and disappointment to post their name on here, but luckily for them I think that would be a mean and degrading thing to do and don't lower myself to their malicious level!

In another note and moving on before I get more upset, my husband is trying to raise money for a stairlift, so far £0.00 has been raised. We have ran out of things to sell as sold lots of items just to live previously.

I was not getting involved but after all the hassle on the internet etc today, I think I may get involved and try to help him as all his efforts have been exhausted and I really feel for him I do. He is trying his best for me and our son.

We need a minimum of £4,000 as our stairs are L-shaped and nothing in our life is ever easy, thats for a stairlift alone, no maintenance or fitting.

You cannot buy L-shaped stairlifts second hand or refurbished either or hire them, only straight stairlifts which would be of no use to us.

I am thinking of writing in to a magazine to raise SPD awareness, help others and to see if there is any charity that has the ability and finances to help, but I am shy and don't know if I can be brave enough to do it. With this blog I get to hide behind my words as there are no images of me and I am not getting attention and it is here to help others, but in a magazine etc I would be photographed and people could look at me, and malicious people laugh at my misfortune... but I don't know what to do.

If I don't get any help atleast I would be raising SPD awareness which is what I want! But... people close to me will disagree with the publicity and have already talked me out of one thing and say that people could approach me in the street etc and would know who I am.... :(

I am stuck in this paradox and don't know what I can do, my husband is frustrated and trying to help me and social services need a letter to confirm my SPD is long term to get a stairlift but my new consultant whom I thought would be helping me is not at this time and only met me once in which they have written to for a letter confirming this and I doubt they will be able to get the letter, in the meantime I am left to suffer again.

The other night my pelvis locked up and my husband was upstairs on the toilet, (not for long) our son was next to me in his moses basket and I was laid on sofa as I still cannot lie flat and he helped me on there prior to pelvis locking up, anyway our son started crying as he was hungry and I was unable to pick my own son up, you cannot put it into words how that feels!!!

Worst feeling in the world.

I daren't attempt stairs as it hurts and my pelvis locks and I have no way of getting downstairs in case there was a fire, as if I was ever able to get up, I may get stuck upstairs like what happened early on in my pregnancy and it was agony to get down and took ages and I was immobile for days afterwards it damaged me that much. Was stuck upstairs for 3 days!

People really do not know how lucky they are, and I thought the same when I was fully abled and helped Learning Disabled adults and children.

I just want to be able to walk for when we get our son christened and thats not looking likely and to be able to have access to a toilet and a shower (as i won't be able to have a bath ever again unless i get a bath lift, and i am not asking social for one of those, i am only asking for what i need) and just want to be able to be the mam I dreamed of.....

...SPD has ruined all of this and now the health professionals who can change my life and take me seriously are ruining everything for us...

*(This is my blog, I really needed to vent, I am confined to my home, downstairs of my home at that, and never once, throughout my whole SPD experience, have I been offered counselling, or anything that would actually be of help. Keep asking for referral to: Manual Physiotherapist, Pain Clinic, Gynae, Counselling and consultant... nothing as of yet...)*


Friday, 11 December 2009

Fobbed off much?


Well I was sent to hospital yesterday morning early hours by an out of hours urgent care DR.

I had a female problem and increased bleeding and large clots etc.... (not very nice to state in a blog really is it, but anyway that was the problem.)

The lady Dr that examined me was adamant I should try to have the examination without the use of gas and air, and didn't have my notes, so obviously didn't take me seriously and I am still suffering now!

Internally I am in agony and she has made my SPD worse.

I was crying during and after and got some gas and air but when it started working she took the gas and air off me. She then kept saying assertively which i did not appreciate, (my name) look at me! Look at me! Over and over. It got to the point where she said (my name) your pulse is normal! I replied, it has been normal before when I have been in agony with pain that it has taken morphine to reduce, and she kept saying (my name) look at me! over and over again. I then said you are not another one of them who think my pains all psychosomatic are you, as I was getting upset at that point as I was trying to calm down and cope with the agony she had caused, she said no i am trying to calm you down as tensing makes pain worse. Well I did what she said and breathed etc and the pain stayed the bloody same so I bottled it all up and sobbed at home.

I had to take 10ml of Oramorph on more than one occasion early hours of today and last night, (doubled dose) as advised by casualty Dr I phoned, and 2 paracetamol at times yesterday and had 30mg more than what i was prescribed which is not much more but i had to double doses up at times.

I was told by the Registrar/Dr there that the Prolene left inside me does not immigrate (if thats spelt right) and just sits where it is left and that if it is 100% prolene in my notes, hospital will call me back to have it removed, so i was happy and left it for her to check my notes next day.

I phoned today and there is nothing in my notes about it or the surgery, just about examination.

I expressed my concern that things keep being left out of my notes and actually mentioned about the inappropriate entry by (stated her name on the phone) and said that they tended to focus on the negative, in regards to my postnatal notes. I also mentioned that I had felt inclined to write in all the missing things and state how I felt about the unprofessional entry but out of courtesy and respect for the staff I decided not to, despite what had been done and documented against me.

I also mentioned how I feel right now, which is just left to suffer, without any professional dealing with me etc, and the physio cannot work with me yet etc... and that the physio in the hospital could have made me worse as the more I find I move, the more immobile I find I end up and in pain... and that my SPD is getting worse and I don't know why as others are getting better (mentioned midwife). I clearly needed to get these things off my chest! The lady at the hospital stated she cannot comment, and I just said I know, I am just in pain and upset.

So the lady I spoke to looked into it and will be speaking with registrar tonight as she is on night shift tonight and spoke to my new consultant (yes i am still discharged from him) he said in contradiction to what I had been informed, that Prolene can migrate and he is not prepared to operate to remove it yet. Will review in three months.

The options I have is to be referred to another gynea consultant by G.P but they could think the same.

I have been trying to get a gynea since I was pregnant, for my pains I have in that area anyway, and the pains more important so will see if i can still get one. (Don't know if same or seperate issue to SPD)

Will see what comes about from the registrar etc.... and in the meantime waiting for more oramorph to be delivered as I am in agony (isn't the word for it!) and waiting for the home visit from the GP.

Also waiting for visits from O.T and Physio today and Health Visitor.

Health Visitor said half one, and for some reason I think thats when O.T and Physio will be coming, and knowing my luck the GP will turn up then too... nothings ever easy. Cannot comment on that yet though, as it has not happened yet.

*fingers crossed*

Wednesday, 9 December 2009

Update: Physio, wheelchair, registering birth, pain, meds, health visitor etc

Well right now I am on lot's of morphine. 2x 10mg of morphine slow release morphgesic tablets in AM and again in PM can be increased to 3 AM and 3 PM if needed and 4x 5ml of Oramorph allowed every 4 hours daily = 40mg Morphine.

I have had to stop breastfeeding to do this when baby was 14 days old and it's really got to me, had plenty of tears and just gutted, miss it sooo much... BUT I am more use to baby like this as it allows me to be a little more mobile sometimes. Mainly I am completely immobile and my pelvis is constantly locking up but atleast morphine is helping.

I cannot lie on flat surfaces and had to sleep on sofa for ages! I am only just in bed now by piling lots of pillows up and i mean 7 pillows in total and another one making it 8 cushions that goes under my knees.

My pelvis still locks as I have not had my O.T visit yet and the pillows keep falling over etc... so i need something else to aid me with the bed height or I am stuck immobile completely and cannot even use commode or end up stuck on sofa.

New health visitor:

Luckily our new health visitor is a nice lady, however she is defensive against my ex midwife and simply doesnt understand how unprofessional, offensive and aware that she is upsetting me as I have told her over and over again to her face and she still continues, that she is. (she said that it could have been my fault and that we may have clashed etc)

We have found health professionals are all too happy to diss us/blame us and things and allow such behaviour and malpractice to continue but are not too happy to help solve such problems or suggest PALS or any help or complaints dept, as if they actually condone such behaviour(s) and actions.

Our health visitor stated "I heard that you don't want me?" I said she must of heard that from midwife as I just said I am sick of people being in and out of my life when they are supposed to stay in my life for a while, and being passed from pillar to post like a parcel! Which I am.

I merely requested that the previous health visitor came back to us as she said she was going to be with us for 2 years. My midwife even kept saying that "she was never assigned to you" when we were told otherwise.

Just while I remember my midwife has robbed us of the opportunity we had to get healthy start vouchers whilst I was pregnant too, (Just what did she actually do? She just upset me all the time and never did her job!) Anyway we got an app form from the midwife and we have applied.

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HAPPY DAY:

We registered our baby's birth on 3.12.09 and it was a memorable and happy day.

We did end up talking a lil' about the way I have been treated and my lack of faith in Drs etc now and the lady that did the birth cert. had some horror stories to tell us too, she saw a top consultant that could have killed her had he put her on medication he was going to (not going to explain the details as it is not our story to tell but yes the meds would have killed her) and when her partner spoke up about it the consultant ripped up the prescription and refused to discuss it further.

We have come across so many horror stories associated with SPD and now many not.

Anyway, we thoroughly enjoyed registering the birth of our son and we were extremely proud to confirm his name, the name we had prior to his birth :)

About time we had a nice day! Shame I am constantly reminded of my inability to walk as it was hard to move around their offices and lift etc in my wheelchair.

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Wheelchairs!

I phoned my old hospital O.T and got the number to change my wheelchair, having tried to get in touch with the Red Cross all day and leaving several numbers and trying to get through to the NHS wheelchair dept I was about to give up as that number was busy.

I phoned O.T dept again and thankfully got a different number for NHS wheelchair dept, which were VERY HELPFUL and sorted out a self propelling one which will help sooo much for next week, to replace my old manual wheelchair that needs someone to push.

I appreciate it always when we get some help and it is such a nice feeling when a dept. actually helps you and is polite, friendly and understanding. Very happy with that NHS dept. Very happy.

Cannot wait to have more independence when I receive my new wheelchair.

The helpful lady even said if i have any problems don't hesitate to call them! :D

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PHYSIO:

I saw my physio yesterday and she was fantastic!

She said she cannot help me until we know for definate exactly what is wrong and was shocked to find I was left like this to struggle with a baby and that I had not had an MRI scan, a gynaecologist or a professional to help me or diagnose me.

She also knows the physio I keep asking for a referral to and I have given her permission to talk to him and my GP.

SO i am now hopeful and finally got someone who is polite, friendly, approachable and I feel like I can trust!


Finally home:

You'd think things would get better from here... you would be wrong.

I was in agony the same night I was discharged and my pelvis locked up when I laid flat on the bed preventing me from breastfeeding and I had to sleep on the sofa. My parents had to come out at 4:30am and help my husband lift me to the sofa.

When it did this again the next day the urgent care dept out of hours suggested I phoned the ward I was on, the ward I was on did not want to know and as far as they were concerned as they stated "You have had the baby now..." and basically I am no longer their problem.

So I phoned A and E and and my mam and dad came and took me and the Dr there gave me morphine but said I could breastfeed on it.

Morphine made my baby vomit so I stopped it.

Second time I was stuck on the sofa unable to move and scared incase I needed the toilet as I couldn't even nudge myself forward or sit up/back so I phoned urgent care at 23:00 and the lady came out at 02:00 and gave me morphine and an IM Tramadol injection.

Keep being passed from pillar to post AGAIN!

I had problems with my community midwife still, the last time I saw her she randomly brought up my SPD, which what she said upset me and my husband yet again.

She stated that I don't have SPD as the X Ray was normal and even my new consultant confirmed this. It was said in such a way that inferred that she was trying to prove me wrong and make out my SPD is psychosomatic.

I phoned my GP crying my eyes out (For the first time in the whole time I have had SPD I got really upset! Despite not having counselling, professional diagnosis, and having to cope with being completely disabled and immobile from being completely mobile) The Dr basically said that my psychological / mental state was taking over and thats exactly why social services children in need team and the psychiatrist has to be involved!

Some help that was, pardon me for being human and having a normal human response to an extreme stressor!

They have also changed my health visitor so again passed from person to person!

1st night home I tried to give myself the Clexane 40mg injection as no one would show me how to do it I had to try myself. It went wrong, the needle must be different as it got stuck going in and kept sticking and I managed it but it has frightened me for the moment I am terrified of these spring loaded injections and cannot do them.

The temp midwife we had for the weekend (one day sunday) had to do the other one and said my midwife would weigh baby tomorrow, and I had to get the midwives to do them, and I ended up arguing with 7 health professionals, same argument over and over again, about them wanting me to inject myself.

First off my community midwife came out the monday after (same day she mentioned about my SPD) and got quite nasty about me not doing Clexane referring to me as being silly etc... and even suggested the Dr stops them to solve the problem as someone would have to come to my home and give me them and she cannot see the midwives doing that! She said they'd do them at the surgery tomorrow and complained that the midwife we had yesterday did not weigh the baby.

She also changed the baby on her knee prior to weighing him in our new suede chair and ignored my polite request to merely put the changing mat under incase he wees, responding "he'll only wee on me..." lovely!! We want our house hygienic thank you! Then she put the dirty nappy on our carpet on the floor despite my husband holding a nappy bag ready in front of her face, then having to tut and pick it up in front of her... again HYGIENE?

Same thing more or less happened with the Clexane when we went to Dr's Tuesday (had to as lots to cover and sort out and baby appt. too and we had transport) and the nurse was reluctant to do it despite what midwife had said.

She stated "Well you expect to come to the Dr's everyday for them then?" I explained that I couldn't to which she replied "What's the matter, you houseound or something?" I got really upset as I answered "Yes." Because at the moment I am :(

I got her to phone the ward who had given me them to confirm so she did that, but they told her I was on 2 injections as thats what I was on in hospital and told her I self-administered.

So I explained again, they gave me one daily after hospital and that I have never done them ones before!

She said "Who done them when you were in hospital then?" I explained that the nurses/midwives did.

She then said she could show me completely ignoring the fact that unless I get a hypnotist there's no way I can do them as I had to fight with my head to finish the 1st one I did and its terrified me since.

She kept going on abut the paperwork as if it was my fault and that I should have paperwork and it all got too much for me so I responded

"Im sorry but it is not my job, position or ability to organise the communication between NHS staff and I am stuck in the middle of it all, being passed from pillar to post, having to explain the same things over and over again to different people and I am sick and fed up of having to do so and being scolded all the time for things beyond my control"

to which she replied "oh, its alright *my name here*..."

and i interrupted saying "well no, its not alright, its not my fault i am here now as no one showed me how to do the clexane and i dont appreciate that it went wrong and I need someone else to dio it now nor do i appreciate being blamed and made responsible for passing messages which most are important and serious in regards to my health, to and for NHS staff. "

She still tried to show me and get me to inject and i said that I am not a nurse, have had no training with injections and cannot be expected to inject now after what has happened.

(I felt quite proud of myself for being able to say all of that for once at the time it was happening and being able to stick up for myself for once!)

Anyway, she eventually did it after looking through all my confidential (mostly not related) notes that had nothing to do with Clexane and were private and some about the social services safeguarding children's dept.

After that we got nurses at home to do them that still wrote in their notes " with the aim to teach *my name here*  how to self administer " word for word.

I had to explain to them too that I could not do them.

Hopefully it will sink in!