Oh wow just read through the whole of this...trying to retain all the info and things said...I don't know where to start, so much said here already that I know and have experienced. Interesting about the blog thing I need to be able to concentrate to take that in.
I've also felt like it is a genocide beginning, in some ways the scariest thing about that is it felt a little bit like that when it was the last government was in, the man who assessed me in my home when I was often nearly dying from asthma attacks didn't know how to read a peak flow meter reading chart. He didn't know what it meant if my peak flow was hovering at 180, I am supposed to go to hospital but if I did I'd be in hospital far more often and they would then send me home unable to self care, I digress sorry my sob story is long and tedious! I was declared able to walk unlimited distance, with a normal gait, without danger to myself. I gave up at that point trying to get dla, this was 2004. I got the letter the day my mums neighbour was going on about how had her back was really bad and how she had been shopping in Carmarthen 30 miles away that morning (in her disability car) before the crowds. I had no ability to do that and felt hurt, but not strong enough to fight at that time.
Outside the appeal times I ended up in hospital for 10 days after trying to walk back to my sofa from my toilet. Luckily my family hadn't fallen apart at this point and my son heard my one call for help, he called an ambulance, it had been a close call. I was still being fed when hungry and unable to cook for myself and children. The man who assessed me smiled in a way that turned my stomach, it was spite, I will never forget that smile. I wrote an angry letter just ranting and getting my frustration out at the dla from my hospital bed telling them how wrong they were. It was actually taken as a valid late appeal. I got mobility but no care even though I relied on it and my daughter was some time later recognised as my carer. Yet when the family broke down it wasn't recognised I needed one any more. I often went very hungry.
I think I would have given up had I not got support at the time through myspace. The emotional and informational support I have had through there and now facebook has been an intrinsic part of my survival alongside my mum, my dog and my reflexologist/counsellor/friend. Family and friends abandoned me it seemed, so called invisible disability can have that effect. Some are coming back and I have forgiven much, including the lack of care in the system that made things so much harder, or at least how it made me feel. Still being a valid, creative, talented, intelligent, frustrated, thwarted one time vital person can be frustrating to watch and be, in fact it can be hard to believe there is any validity and worth left. Sharing on the net can be the only place of human contact a person has, it can also provide such a support system that eases people's burden that teeters on the top of the disability that is affecting them. The burden of being treated as worthless is a distressing one, especially if you believe you are worthless, which is a feeling that I have felt at times of greatest trauma.
Stu you really should be playing violin as I relate my sorry tale ;o)
What I went through at start of disability and nearly dying too often for comfort, which can make you look at life in a different way which alienated me even more from more people and made me better friends with people who could relate and understand...erm thread where are you...it paled into a mere flesh wound to what happened last year. The assessor smiled an even more disturbing smile as he put false statements on my report. Like when I was being raped the 1st time aged 18, I pushed what was happening to a recess in my mind. I didn't know at the time that is often how the survival instinct works. I had to keep my dignity, I had to keep strong. I stated my reality, it was mocked and I was declared fit for work. I have similar symptoms to Stuart. Stress makes them worse and can cause a relapse to the extent it amazes me I have survived ones such as that one. I appealed, ranted, wrote all over the notes, couldn't shut off, couldn't think of anything else, couldn't eat, couldn't shop, couldn't cook, couldn't sleep, would fall asleep for an hour or two and wake up crying. Actually I reacted far worse to being declare fit for work when I so patently wasn't than being raped for the 2nd time at 31.
Because of abuse trauma I have worked on how being abused made me feel. After the 2nd time I went back to college as a single mum, was delighted that the counselling I couldn't get on nhs was available as a student and took full advantage of 2 years intensive counselling whilst doing art, which was therapy in itself. I went on to travel a year 45 miles each way and 2 years 30 miles to do my degree, which I finished after having carbon monoxide poisoning, working part time and bringing my children up, such a slackers life for me ;o)
I did a year of post grad higher ed teaching training but became more interested in counselling and started training...then I had a bad allergic reaction to bleach in a charity hair cut, shaved to no 5 and dyed purple raising over £5,000 for local cancer and leukaemia care...I was also practising reiki at that time and unable to be a donor of bone marrow decided my hair which was long could be donated, actually still have the plait. The client who inspired me died early in 2004 she was 21, wonderful and talented and was a privilege to know. 5 days later the guy whose charity it was for had also battled leukaemia for 10 years and he campaigned for and got the national bone marrow register set up. I have met some amazing people who are very ill and do as much as they can to help others.
I have the wrong illness to be believed, although they are even declaring cancer patients fit to work when they are also patently obviously not...it has always been a scary place to be getting ill and having to rely on benefits, it has just got more so.
I have been suicidal through the lack of care and what looks very much like spiteful, deliberate, slow homicide.
Surely they know the psychological effect of increasing stress on the already traumatised. It causes suicidal fantasy, especially when the symptoms get unbearable due to the stress and pressure that is being put on the already ill person, if the suicide doesn't get them and they manage not to starve and get through, they can tend to get quite vocal and yes appear fanatical...
Think I may need to stop now...hurting, need food but expressing that has felt like a release, it is good for my mental health to tell my story and hope that someone will either find comfort in it that they are not alone, or another may actually wonder if they are being told the truth about ATOS and what is happening to the vulnerable, you see to survive the vulnerable have to be strong...wait....yes that means many vulnerable are not strong enough to get through precisely because they are at their most vulnerable when they are being metaphorically kicked a fatal blow...that may wound physically.
I don't want pity, I just want a right to survive and the appropriate support to do so, am I asking too much?
Sunday 22nd January 2011 22.37
I am hopeful for it but not as confident as I would like to be. I have an amazing CAB advisor helping me, she has spent a few hours in my home and can see for herself within the criteria the 0 points I was awarded should have been in the range of 50-60. It comes to something when genuinely ill people need representation to get a fair hearing...and I pray they are still there and able to help next time. I will find a way to survive somehow and even if the tribunal goes badly I will not let it nearly kill me. I will not play that psychological game...I may rant and get upset but I will god knows how survive. :o) xabout a minute ago ·