I wrote half of my Christmas cards last night (how very wild of me!) and so today my brain is in a strop. When my brain and body can’t manage such a ‘straightforward’ task, well, it can leave you feeling a bit hard done by. For me, it is a big task – to be able to hold a pen, move my hand and arm to write, sit up long enough to write, concentrate on writing neatly and in correct sentences, battle against the out of focus vision and the smell of printed cards…
This week my mum has filled in the Disability Living Allowance (DLA) form and these benefit questionnaires always leave me feeling a little flat and a bit sad. Despite being ill since 2010 we have never applied for DLA until now, partly because the directgov website told us we wouldn’t qualify, but they may have been telling porky pies. Imagine that!
If M.E could be cured by filling in questionnaires I’d have made a full recovery by now.
I’m not well enough to tackle the forms myself and so my mum has to spend hours going through them and answering the ridiculous questions. I hate that I can’t do it myself and that she has to take the time to do it for me. The multiple choice options don’t have the answer that M.E sufferers would need to give.
These forms are soul destroying in my opinion. I really dislike them. We have to focus and think in detail about how we are affected by our illness. I much prefer to stick my head in the sand and plod along with it, rather than having to think about the huge impact being ill has had on my daily life. Each form is just a repetition of the last, with no option to say that there have been no changes in the info last sent off. If you weren’t feeling poorly before the form filling in, you certainly will be afterwards. It takes my poorly friends weeks to complete them. The forms have to be completed with a certain amount of time…The system works against the very people it is supposed to be helping.
Today I desperately don’t want to be poorly. It’s my mums birthday next week and I wanted to make cakes for her and for my cousin’s home-coming get together this weekend. I wanted to paint my nails and shave my legs. Alas it is looking like yet another pj day and it is highly likely that, at the age of 24, I am going to need to crawl around the house because my legs are so weak and I feel so poorly. I suppose the most important thing is that I am well enough to make the weekend and so these extras will have to take a back seat. I can’t have it all.
But it makes me sad that I can’t even manage to do something for the person who has been my rock throughout the course of this awful illness.
Today might be one of those rare days when I just need a good cry!
Still, tomorrow is another day and although I won’t be able to make the cakes or paint my nails because I need to save my energy for the weekend reunion with my cousins, I might be able to have a shower and get dressed. What more can I really ask or hope for.