Last year, I went for a PIP assessment, which I failed. Apparently, my “high level of intelligence” excludes me from being disabled (epilepsy, anxiety, being autistic… yeah, none of those incringe on my life at all, apparently). As for the ME/CFS…
“I wish I could stay in bed all day.”
This was actually said to me, by the woman who was supposed to be assessing my needs. I was so shocked by this statement that I actually laughed; I laugh when something shocks me – I can’t help it. I suppose it’s my brain’s natural defense against events that would otherwise horrify me.
When I recieved the dreaded brown envelope informing me that I wasn’t going to be recieving any PIP, they might as well have just said “We think this is your lifestyle choice”, because that’s exactly how it read to me. I’m clever; I cross-stitch; I keep tarantulas; I write a blog; I like to read. All of this (and more) was used against me, when really it ought to have told them that I try to live life as normally as possible. Sadly, that is not how they viewed my attempts at normalcy in a reality that shrinks down to little more than my own four walls.
Allow me to explain what “staying in bed all day” means to me. I’m not eating Jelly Babies and watching Doctor Who all day (if only my brain still had that level of concentration); I have constant and unrelenting brain fog and it’s painful. It hurts my head just trying to remember my date of birth sometimes. It’s muscle twitches, which I do leg stretches (in bed) for, in order to try to control them. It’s unrelenting exhaustion that stops me from even sleeping because it hurts so much.
It’s relying on dry shampoo and baby wipes for hygeine, and even then you still feel grubby because you can’t summon up the energy to have a shower or a bath. It’s living in your pyjamas because it hurts to get dressed – and so you only bother bathing and getting dressed when you absolutely have to. It’s staring out of a bedroom window, at a world that you cannot be a part of, remembering the days when you used to go walking and wishing that you still could.
It’s struggling to perform everyday tasks (if you can do them at all) because you borrowed spoons the day before so that you could leave the house. It’s having to put a disabled sticker in your porch window so that the postman and couriers know to give you time to struggle downstairs to the door. It’s getting fat whilst eating hardly anything because you just don’t expend enough energy to really ever be hungry. It’s muscle wastage through lack of activity.
Most of all, it’s a need for sleep even though you’ve slept for 15 hours, and never feeling refreshed when you wake up. It’s watching the clock and hating every minute that ticks by, because you can’t do anything or go anywhere. It’s pain, and sadness, and frustration.
Do you still wish you got to lie in bed all day, if you had to live with these complications? No, I really don’t think you do…