ME/CFS Awareness: Not A Lifestyle Choice!

Posted on by Accidental Spacegirl

Bed

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…

9 thoughts on “ME/CFS Awareness: Not A Lifestyle Choice!”

  1. Don’t you wish the evaluation could be about THEM having to “try out” your body, feelings and struggles in a day? Or maybe just a few hours would be enough for them? instead of what they see and perceive on paper? Maybe then they could make a concise and informed evaluation. I think people flippantly say things (I’d like to spend all day in bed) without thinking about what that might really mean to someone else.
    A friend recently recommended the book, “Why Isn’t My Brain Working?” by Datis Karrazian. I was amazed by all of the factors and triggers for brain fog and decline. I am taking a few of the recommended supplements for what I think might cause my brain fog, but there were a lot of case scenarios of people with various health problems, disorders and disease where some of the strategies he recommends have done wonders at very little cost.

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    1. Tomorrow is my wedding anniversary, and so I’m going to have to bathe, put clothes on, and cope with people because we’re going out for a meal (it will help that it’s a familiar pub/restaurant to us, but it’s going to be full of families having Sunday lunch). I will cope, and then on Monday I will be broken. Such is my life. It really does upset me that “professionals” brush our issues off as “making it up”, “being lazy”, or “Everyone gets tired”. I wish I could remember what healthy tired felt like, but I really can’t. These people should not be dealing with the sick and disabled, and playing at doctors when they’ve never worked in the medical profession in their lives. I don’t know what it’s like being able to get disability benefits in the States, but over here we have to jump through flaming hoops time and time again, just to get maybe a fraction of what we’re entitled to (if we’re lucky).

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      1. It is entirely too easy to tout PTSD or alcoholism or depression to get on disability here in the States. I have real issues with the way government here has made disability a way of life. No one goes the route of welfare benefits anymore because disability is so easy to get.

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      2. Whereas here, people are throwing themselves in front of trains or hanging themselves because they’ve been declared “fit for work”, even when they’re terminally ill. What a messed up world we live in 😦

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    2. To be fair here in the UK we also have a lot of people who claim benefit they are not entitled to, the reality is those who don’t always need things seem to be those who are better at working the system than those who genuinely need the assistance.

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  2. Have you seen “I, Daniel Blake”? You should get hold of someone such as Citizens’ Advice and get help to challenge the decision. Part of the problem is that the “medical” which the “health professional” carries out in the assessment centre doesn’t take into account a person’s actual medical record or even have anything to do with the NHS or treatment that is being given.

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    1. I haven’t seen the film myself, but I know about it. Dom has his job now, and so I don’t *need* PIP (although I am still medically entitled to it). At the time though, we really needed it, and the Carer’s Allowance that we also lost.

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  3. Sorry to hear of your troubles. Keep fighting. It’s not an easy life to live and I understand wishing it upon them sometimes just to give them some compassion and a sense of reality in the world in which we find ourselves.

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