My application for DLA has been turned down…

It has been so much hard work. Filling in the form took 6 weeks and felt like a lot of work, i had someone to help me and even then we only got it in the day before the deadline. The first three weeks i was completely unable to even think about it or concentrate on anything like that, and just managed to write a diary for a week as supportive evidence, then the next three weeks were spent filling it in with several short meetings with my benefits adviser who wrote it all out for me. It really exhausted me especially as we pushed to get it in in time and i was not really up to working on it. I got very down as i found it completely demoralising.

Then two weeks ago i had a medical and it was a nightmare (the same week as i had to fill in my incapacity benefit form, and with a phone call on Wednesday asking me to go on Friday i then had to push on with my IB form as i know i would be unable to finish it at the weekend, as well as reading up on what to expect at the medical). I found the medical very stressful. My partner came with me thankfully, and write notes as to what was said. We had to wait half an hour (which i believe is standard for “observational purposes”), then spend a whole hour in with the doctor.

I won’t go into ALL the details but I was feeling very weak and ”past it” by the time i saw the doctor, (at 2pm, and although i did lie down before we left the house I would usually have had a nap by that time, and with the extra stress of the occasion i was not feeling good) my back was hurting, i felt very light-headed and dizzy (even sitting down) and was having trouble speaking and expressing myself clearly which led to tears of frustration as the doc was so ineffectual. The doctor could not type well (2 fingers and slow) and seemed not to be able to listen and type at the same time, which meant that he asked me the same questions over and over (and over) again, constantly getting my answers wrong and even interrupted me if i responded with anything more than a yes or no answer as it seemed he could not cope with typing sentences or deal with nuanced answers, which frankly with a fluctuating condition you are going to get when you ask questions like “how far can you walk?” “Can you do x for yourself?” etc. there are not many things i can say a definite yes or no to! I felt forced into oversimplifying my answers, as i had to on the form, which makes you feel as if you are lying, but the questions are not designed for M.E… by the end of the hour I could barely stand up and made this clear (i refused to stand to do exercises and sat instead on the bench, although he then made me stand against the wall to do a sight test (did i say i can’t see?) for a minute or two…). How that medical could not have backed up what my form said i do not know…

That took a full week to get over, during which i ached literally all over, and barely made it out of the house (very short dog “walks” when essential), had head pains and generally felt as weak and as bad as i had said on my form… actually even worse, which made me not doubt myself so much (It is easy to feel guilty when i have a better day or two and i can do things i have said that i generally cannot – forgetting how bad things are 95% of the time, and i have not even been given any money yet! It is ridiculous to feel that way when i am only trying to claim something i am supposedly entitled to…). I thought, if i could do a video diary of the impact of a one hour doctor’s assessment, maybe they would get it! I slept as much as possible. I did not feel too down, just incredibly weak and drained of all energy. I did the bare minimum in terms of dog walking, personal hygiene etc… The thought of going to Scarborough for the weekend gave me something to rest for so i knew it would be worth it if i could make it.

Scarborough was great – it could not have been better - see separate post!

Then Friday i got a letter saying that i am NOT virtually unable to walk, that i CAN prepare a meal for myself etc etc. Very occasionally this is true… most of the time however it is not. Even if i do these things, the impact that having done them has on my health and my ability to manage my symptoms and how i then feel the next few days (when i would most certainly not be able to do the aforementioned things), means that i would have been much better off not having to do them. Also, been able to do something sometimes, and not knowing how much “payback” i will get is not a lot of practical use as i can’t plan to do anything as i never know when my “better” days (or is more often the case, better hour or so) will be…

Anyway i am going to appeal and hope that at the tribunal there are intelligent people who can see the limitations that I face in daily life and hopefully they will be able to see that they fit with the DLA criteria if you have half an imagination… here’s hoping… Apparently that can take months to happen so i will just have to get the correct form, send it off and then try not to think about it too much in the meantime and hope that i feel able to cope with it and the stress it will undoubtedly cause at the time.