PGP / SPD My story:

Well atleast I made it to being a Mam, but disabled for life too? It was all worth it. I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome. I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours... I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily. Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse. Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centr...

..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 ...

Social services and my OT have said that I won't be able to get a stairlift at all. So I am going to definately be left without a stairlift: access to bath and shower and toilet till 2010, minimum february and maximum 2012. They expect me to have a quick wipe down downstairs in regards to hygiene and use the commode. Bearing in mind I am having a baby too, due dec 2009!!! The charity/church I phoned cannot even help with a stairlift. We really don't know what to do as I cannot even wash my hair as I cannot do it in the sink downstairs and don't have a table to rest a dish on or anything. I have a shower seat to get into the shower but that is no use to me if I cannot get to the shower. I am going to miss out on being a proper mother till 2012 when my childs 2, and thats if i fully recover. :'( They are taking everything away from me! :just want to be left alone:

"Baby born two days too soon is left to die Sarah Capewell says her baby, Jayden, lived for two hours after being born at 21 weeks and five days' gestation. Premature baby 'left to die' by doctors after mother gives birth just two days before 22-week care limit (dailymail.co.uk, 08 September 2009) Bereaved mother's campaign against medical guidelines that allow premature babies to die (telegraph.co.uk, 05 September 2009) Premature ‘little fighter’ challenges abortion limit (30 June 2009) Sextuplets mum ignored doctors' abortion advice (15 June 2009) Healthy baby born after mum was told to abort (26 March 2009) Mum slams abortion law as 23-week baby lives (07 January 2009) Wednesday, 9 September 2009 A young mother watched her baby son die in her arms after doctors refused to help because he was born two days too soon and therefore ‘just a foetus’. Sarah Capewell gave birth to Jayden after 21 weeks and five days of pregnancy. But doctors refused her desperate pl...

I phoned my social worker , immediately she seemed to want to hang up on me and kept demanding who advised me to contact her. So I told her. She was still then more in the attitude of I cannot help with stairlifts, which was repeated throughout the call. I understand there are notes on her system but it would be nice to have the opportunity to explain our circumstance so she can make a decision as to what to do next if anything. She kept asking me what I want from her (in different words not that it matters anyway as its plain english) and I kept saying what can you do? Till the point I said well what is your job role?? I have left the conversation with her, more angry and upset than I was prior to it, feels like I was talking to a wall, and that as far as she is concerned she cannot help etc, although at one point she did say over and over again she feels the need to contact my midwife to state about my nutritional needs etc, and that she will be passing a referral to Family Welfa...

For the last few weeks my pain has got worse (it was always constant) but now it's much worse and it is keeping my husband and I awake. I am sick of all this torture , it's bad enough being in pain all the time but thinking about if that person sat behind that desk at DLA who needs to make an opinionated assumption as to whether they feel I need 24/7 care without sending me a medical assessor experienced in severe SPD, declines me again despite factually needing 24/7 care our lives will just get much worse as we are not eligible for anything. It's not like we can say, oh OK then, our bad.... my husband still cannot work, I still need 24/7 care and we have no choice but to appeal again to take it to a tribunal. I have sent them confirmation in letter form from my G.P stating I am likely to have it months after the childbirth due to the severity of my SPD, documents on minor (some areas severe) SPD and requested a home medical assessment in an essay of a letter about my ind...

We went to view the council property today and we have accepted it as we have to. We have no cooker and as it is a council house theres no carpets/wallpaper/decor at all, there isn't even lightbulbs lol but we can sort lightbulbs. The council told me that they don't have any bungalows for elderly let alone for disabled and that if I sent my information to them about my medical needs the only houses they can offer me are two bedroomed properties in which all two bedroomed don't have downstairs toilets. So we have taken this two bedroomed property. Only three bedroom properties have downstairs toilets and with the problems I have had I don't think I will ever be able to have a second child. I need to be able to look after my first and at the moment I need 24/7 care myself and life really sucks! I am just worried and sick of all this verbal promised help and support and there isn't any at all. I phoned my O.T who is not available and her colleague stated she wouldn...

Are people that work for benefits departments just trained to make you cry afterwards? This is not the first time I have experienced inappropriate comments and attitude when I have been on the phone even just enquiring about benefits, I just wish I had the guts and energy to stand up for myself to them... I find myself politely debating with them as opposed to actually saying, "well that is not for you to decide is it?" or even "I didn't phone you to take abuse or inappropriate comments, I phoned you for appropriate advice and help not your opinion." I phoned DLA to let them know my pain has gotten much worse to the extent going out in the wheelchair is now a problem and told them I am on Clexane, the lady I will only refer to as 'S' was extremely unhelpful. She said she can only put forward that I am on Clexane and not update my information in regards to my immobility and she was making comments like "I hope you are not relying on getting this bene...

We had our first parentcraft class last night, my husband walked me there pushing my wheelchair a 30 minute walk at best, we went early as we had to spend some time in town to post my DLA appeal and a complaint in regards to having being mistreat by a DR from Urgent Care in regards to my disability and my husband. Having got there in the end I was determined to stay and was in a lot of pain, I cannot comment on what people thought of me being pregnant and in a wheelchair but I was determined for them to know the truth, that it was because of the pregnancy / the SPD that I was in a wheelchair, there was a lot of shocked faces. The pain got much worse and unfortunately we couldn't stay, and due to my pain etc we won't be attempting to go again as it is also a 30 minute walk home too and my husband pushing me is just no good, for him or for me as pavements are complex and bumpy and extremely painful when I am jolted. We didn't have transport money this week anyway, so had no c...