PGP / SPD My story:

It's been a while since I updated the blog, that is because we have now moved house as we had to and we have been waiting for our broadband to be reactivated. I have become depressed due to the disability I now have to 'put up with' and got myself a psychiatric assessment as I was also sick of health professionals not taking me seriously and acting like I could just walk when I really cannot. I have accidentally tried as I have been half asleep or in a world of my own, and my body immediately reminds me that I cannot and I will suffer for it :( The diagnosis? That I am quite optimistic despite the situation and my concerns are for my baby to make sure my baby has the best he can have, also that the problems I am facing are very real and not psychosomatic and that anyone who would have to adapt to such a severe disability despite the cause would feel the same. This has also been confirmed by social services and my health visitor was fantastic, a great shoulder to lean o...

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...

My husband has been offered a job position, we don't know when it would start as it may even start next year but just incase it was to start immediately we phoned social services who cannot provide 24/7 care and only do pop out visits (the problem is its during the week full time) so he cannot even do that as he needs to 'babysit' me.... Everything keeps making me feel like a problem. My husband however has said that I come first and I cried into his arms for a bit, I love his cuddles, and that as it is a fact that I need the 24/7 care he is not going to jeopardise my or our unborn baby's health just because others cannot see nor accept this fact. I am in agony now and we have not slept right for 5 nights in total now due to my pelvis pain. I am sick of the commode but I guess I have to get use to it anyway as the new house doesn't have a downstairs toilet and the social and others have said I don't need one as I have that. I wonder how they expect me to shower!...

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...

I am having to look into rehousing and have contacted my local council in regards to my housing needs, I have sought advice also from social services and my Occupational Therapist who has been more than wonderful. She allowed me to cry my eyes out and confide in her about my problems even though she can only help in regards to my housing needs. A much needed ear and her workplace are very lucky to have someone like her on their team. Why was I crying? I am extremely upset. I have not been able to tackle stairs for 3 weeks now in which means my hygiene has suffered. A quick wash at the sink is all I have been able to have and living off facewipes, I am depressed. At my parents (I am in their care at times) since they have a bath downstairs I attempted to have a bath, it hurt immensely when I opened my legs to step sideways in the bath and cannot stand on one leg therefore fell over into the bath and hurt my pelvis and left leg. (Having been to hospital on Friday the 2nd October with ext...

I am still broken hearted that we had a death in the family recently, which hit the whole family hard so we cannot even try to imagine what the mam (our relative) feels like. It was unfortunately the death of a baby which we all loved. I am not going to go into details as I don't want to upset the lady I am talking about as she has been through enough. What I will say is at the funeral my heart was broken for everyone especially the mother, our relative whom I think the world of, she is the most amazing lady you would ever meet and a fantastic mother. Heart of gold! I felt awkward and in the way as I attended with my wheelchair and didn't want people to make such a fuss when I was offered the opportunity to throw petals which is bringing me to tears now, just thinking about it. We will never 'get over' this and we will carry her memory in our hearts forever. * * * I am now injecting myself daily with Clexane which is not exactly a nice experience. (This is because I c...