People send me their stories a lot. Some are fragile, some angry, some frightened, some defiant. But they all deserve to be heard. Today, Vanessa sent me her story. If any of you would like to add your voice to this blog, remember, alone we whisper, together we shout.
If you are healthy imagine this for a moment?
Stick a 5lb bag around each limb, add a tornique around one leg and an alternate arm. Dont forget to tie a band around your head and pull it really tight so it stops you concentrating at times. During the day feel free to put borrow your nans glasses and do some shopping. Oh and must not forget the final ingredient.. do all this after being awake for 40 hours!
I know this analogy is true because I was healthy once. I can compare
I worked up to 16 hours some days in my yrs as a delivery driver, I would load up my van at 6am, deliver my van by teatime. then collect back onto my van and empty it at the end it the day. All single handed.
At any delivery I might have a drop of 20 x 5kg boxes of paper up 3 flights of stairs, I did this for yrs.
I used to also work for a lighting company and had to climb onto cranes in helicopter hangers to change the bulbs! Or re-lamp the whole of Tesco's in an afternoon (the days of fluorescents!)
I was exhausted to the point of collapse some days. I remember it. But I also remember it got better after a good nights sleep. The feeling of MS fatigue is much the same, but it doesn't get better and comes on with something as simple as one household chore
So the point of the Atos assessment is what I can do? I can do most things but with the above. Does this mean Im just weak willed and can work really?
How do I explain to you that even though I can do it, I cant? I can only just manage my life. If I have to work I wont be able to live.
I dream I can, I hope of a cure, I want to follow my dreams, I want to carry on learning and contributing but I cant because my illness stops me,
Its a medically diagnosed neurological condition that has no cure, it is also degenerative so until a cure is found I wont get better. Why does that not void me from your test? can I have MS and be a cheat? really?
I know how the witches felt on their ducking stools now..Will I float or sink?
My mental health is affected and I can see how anyone with MH issues feels so frightened. This isnt assessment it is judgement.
What is the point in me living now, I am no longer allowed quality of life because I'm too sick to work and I have to appease all who view and judge my disability levels for the rest of my life? ? god forbid I should get on a rollercoaster ! Or find pleasure in a hobby like baking because then I might be deemed fit for work, or appear in the DM as a cheat!
The worst battle for me in all of this is my mental one.. Am I weak? Is it me not trying hard enough? I carry so much guilt about my failure as a human being to overcome my illness and be the person I am as if without it. As society seems to expect of me.
Since when was it morally decent for someone who has never spent even a day in a wheelchair decide that to be able to propel yourself you are not mobility hindered?
So when you ask me at the assessment Can I lift a jug of water? I want to answer that it is an irrelevant question and in noway an indication of the fact that I cant peel more than 3 potatoes with out going into spasm and therefore pretty useless! it applauds the fact I can raise a jug!
I would rather stand in-front of a judge and jury (or Mr Jay) and plead my reasons for not answering Atos questions than answer the questions in the first place?
And my other little rant is.. If I am under the eyes of the law 'disabled' (and I am because I had to prove I was in order to claim when I was sacked for incapability at work rather than letting me reduce my hours) why is someone else deciding my disability?
I also have no convictions of fraud and can pass an enhanced police check so why treat me like I am lying about my condition when I have the back up of medical science?