I probably ought to be in hospital, a place I fear due to past experience. I also fear applying for a 'change of circumstances' with DLA. When I applied for it I was not well enough to self care or walk around my house every day. I had been too ill to reapply at the beginning of 2008. I was eligible if fairly assessed, nothing much had changed since my last renewal, if anything I was struggling even more and had far less help. I was also too ill to inform WTC straight away, as I was still desperately trying to earn a living as self employed. I had started getting panic attacks alongside the physical illness, especially when dealing with the system to try and access help. It isn't a kind system when you are at your most vulnerable and it has got even worse. I sent my renewal pack back with a letter saying how I am not well enough to do this. It was very upsetting.
About November 2008 I realised I was not going to be able to get out selling my art & crafts again, at least for a while. I signed off WTC and signed on to ESA. I had an assessment, the doctor was nice, he treated me with dignity, respect and as if I were not a piece of dirt. I doubt he still works for Atos. He recognised I was doing my best and struggling simply to self care well enough to keep myself alive. I had to go to back to work interviews that I often cried through and the advisor was concerned for my well being. She advised me to apply for DLA again. I faced my fears and filled in the forms. Again I got told no. I appealed and while waiting for the tribunal wrote about a massive panic attack I had while out and how wrong the decision was. I had a reconsideration granted without tribunal for low mobility. I would probably have had high mobility reinstated if it had got to tribunal. I was too battered by the system to challenge it.
2010 I had a WCA. I was shocked and had a breakdown when I was declared fit for work with huge discrepancies in the data, things totally untrue and assumptions that because I was not rocking I didn't suffer from anxiety. CAB helped me and I won the tribunal in 2011. It had very much taken it's toll on me. I suffered more than when I was raped with the incessant thoughts about being wrongly declared fit for work and when I physically suffered and struggled more the thoughts made it feel even worse. I got a downstairs single bed as sleeping on the sofa was not doing me much good.
When the forms came through again 7 months later I asked for CAB to visit again and fill the forms in for me. I had transco out about gas fumes on 3rd November 2011, they shut my heating off. 4th November CAB lady came. I had to leave my front door unlocked as I was not well enough to answer the door. Early hours of 5th November I had to have an ambulance. I was let out unable to self care 11.11.11 on warfarin, as they suspected a blood clot after I told them of the one I had in 1982. While I was in hospital I remember thinking and saying that if I was assessed in hospital they would ignore that fact and declare me fit for work. The weekly or twice weekly anticoagulant clinic was very stressful. I had to have hospital transport and a wheelchair in the hospital. Many times I felt so awful I would hide my face in my hands and cry.
Peak flow 140 using nebs. Writing this is affecting me but not
writing it is also affecting me.
I had found someone to go with me to my WCA appointment which was cancelled the day before. Then a new date 25th May the day after my birthday, I couldn't find someone to go in with me. I was rung about changing times on my birthday. The whole thing was incredibly stressful and harmed my well being considerably. It has also made it so I often don't answer my phone again. 27th June 12 I was in hospital again after another ambulance trip. 28th June 12 the decision maker rang me apparently but getting no answer declared me fit for work and my ESA was stopped that day. 1st July 12 I was sent home. 6th July I got the letter telling me I was fit for work and my benefits had been stopped.
CAB did the appeal for me as I was worried it would push me back over the edge into another mental breakdown. Mind & CAB support were vital and I felt so lucky to have some people taking care of me, if not the system.
This time sick notes were more difficult and far more stressful to get, even when I was quite seriously ill with breathing difficulties one doctor distressed me so much with his attitude that I cried for hours, had to fight the urge to stab myself in the arm with a Stanley knife and when I finally fell asleep I woke up after 2 hours of sleep crying again. He gave me a month, which meant another appointment and more stress I saw him again as I needed to face my fear of him and tell him how it had made me feel. I went in my pyjamas in a taxi as I was too ill to get dressed. I was not able to go anywhere that didn't have a nebuliser at that point. I was very ill much of July, all of August, September, October and most of November, then became more moderately ill again, so less days where I may need an ambulance and possible death featured.
I attended pain clinic via hospital transport March 2013. That showed me I had already learnt very well to pace myself and assess how much I can do, which is often very little as it is at the moment.
I won my tribunal and was put in the support group in May 2013. The tribunal were surprised I was only on low mobility and so was the CAB lady. The doctor at my tribunal apologised for the distress I was put through. Shame it won't stop it from happening again under the current system. The lady from CAB advised me to put in a change of circumstances I said yes but when the forms arrived I couldn't look at them or ask for more help I was having a bit better health for a few weeks, not good health, just not quite so awful and I was afraid it would make me worse again. As it happens I have had a demand for overpayments from the WTC from when I was too ill to inform them of a change of circumstance and from when I stopped claiming they said they had already paid £300 for that time after I started ESA to the following April and even though I informed them straight away I have to pay back money from when I was on WTC. That arrived just before my birthday this year. I know the system is not fair or set up to support vulnerable people, it is there to fill us with fear and make our conditions worse through the stress. So although I am currently so very ill again I am scared to apply for a change of circumstances as I am scared to give you another chance to abuse me and treat me like a criminal and actually worse than an abuser gets treated, just for being ill.
06.39 Peak flow 140 too soon to use another neb, unable to lie down, too breathless.
06.58 calming down a bit now while wondering if I should really post this and should I really send it to the DLA