PGP / SPD My story:

Biggest Myths and PIP: One of the biggest myths I keep seeing is that disabled people have to look disabled. Apparently, if you're not permanently in a wheelchair, visibly struggling every second of the day, or fitting someone's stereotype of disability, you're somehow not "disabled enough"—especially when PIP is mentioned. No. I live with hEDS/EDhS (as I was told), POTS, chronic pain, osteoarthritis, AuDHD and other conditions. Some days I use a walking stick. Some days I need my wheelchair or my foldable chair. Some days I grit my teeth and push through because life doesn't stop just because my body wants to. My disability doesn't magically appear the moment I pick up a mobility aid. It was there long before that. The walking stick doesn't make me disabled. The wheelchair doesn't make me disabled. PIP doesn't make me disabled either. They're simply supports that help me live with disabilities I already have. I've spent over 20 years a...

I have been hiding away and avoidant again for a while but now i need to speak up again... Xmas is over now and we had a nice xmas as we stayed at my parents and they had bought a sofa and a matching sofa bed for their living room just for us!! Can you believe it, changed their furniture just so i would be able to sleep over at xmas. I love them so much! We are still fighting for a stairlift, our son is 6 weeks old 1st january and I am still trying to get my 6 weeks check up. Whats happened about the stairlift? Well, my new consultant originally refused to send social a letter about me as he refuses all his patients since a check from the county council previously bounced therefore its been seriously held up. My SPD's getting much worse and a while ago now i was in hospital with the stomach pains, different to SPD pains and the consultant who saw me on the 10th the one who discharged me without telling me who i was reassigned to on the 10th Dec said that it would subsid...

We had to set off at 8am for my husband to push me all the way to our new house in my wheelchair which took about 30 minutes so wasn't too bad, although was prettty bad for him as there were bumpy paths, curbs, steep paths upwards and downwards and I can only imagine how much pressure that would have put on his back. We had to get our electricity key sorted, that took ages as the ladies at the shop were extremely helpful but had not coded a number (tag overwrite or programmed a code) onto a key before. They did an RTI overwrite and it worked the balance on the receipt had lots of zeros so we didnt know at that point if the key had the balance of £41 to clear the debt that wasnt ours on the meter etc... Got to the house and thankfully it worked. The men sorted the gas and electricity (safety check) and my dad had got a fridge freezer from that lovely lady from SVP. (catholic church charity). It was ages until we got home, and when we did get home I phoned my midwife as I have been w...

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!...

Seriously considering swallowing whatever pride and dignity I have left if I have any left now, and go to the media... to let the media know what the system are doing to people. I can see myself seriously ending up in hospital as no one can help us. Because I have this disability that is SPD I need: A stairlift = cannot get help for one cannot rent one due to financial situation and due to L shaped stairs. The internet: Costing us £60.00 to move to our council property to avoid homelessness. (we have to do online shopping/banking/the only communication i have with the outside world etc) The phone line for emergencies and the internet: £122.50 cost from BT as the council house doesn't have any wiring or a phone socket/access. The key meter is no good as we cannot top it up due to my care so Npower were willing to change it for free as we have been customers for nearly 2 years but take 28 days from the date we move in, and they said the gas and electric are with powergen. The lady I ...

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...