I’m well enough to work!

Yay! That’s right! Atos and the DWP have thoroughly examined me (okay, well, a nurse barked some questions at me but it’s not like they have a clause saying you need a qualified doctor to examine you if you have a neurological disease, right?) and determined that I am fit for work! Hurrah!

I guess that must mean I’ve been greatly overestimating the abilities required in order to work full-time.

So, here is my advertisement for myself. I have to post it online, because I’m too ill to go to the job centre.

Hi! I would like to work for you! I have a couple of niggly problems because I’m disabled, but the law says you have to accommodate any reasonable requests. So, I’m looking for full-time work, but I can only actually work for half an hour a day. Also, I can’t walk more than a few metres, so you’ll have to install an elevator in my flat and provide a full-time carer to move me around in my wheelchair. That, or I’ll need a weeks recuperation between shifts, to make up for having to encounter stairs. I also can’t sit up for more than about 10 minutes without extreme amounts of pain, so I’ll need a bed provided. It will need to be in a dark and silent room, and I’ll probably need to have a couple of breaks during my half-hour. Also, being forced to sit up and concentrate and move around really wipes me out, so I’ll need to have two days off between working. I obviously can’t manage overtime.

Light and/or noise will trigger a migraine, so you might need to be prepared for me to sleep that off. It only takes about 12 hours though, don’t worry. You’ll also have to bear with my personal hygiene – a warning in advance here – I can’t actually wash myself, and since all my energy will be going on working for you I won’t be able to manage sitting up to be washed by a carer. But then again, since interaction is so tiring for me, I guess you wouldn’t want me to be around people anyway.

I’m up for any kind of work, but anything that involves walking, lifting, sitting up, concentrating, or lots of interaction with strangers will be too strenuous, so none of that please. I’m a hard worker, determined, cheerful and upbeat. I have experience waitressing, working in a supermarket, teaching at a childrens club and programming. Atos and the DWP fully endorse me being able to get a job with this minor ailment, so don’t let that stop you from hiring me! Don’t see my disability, see me. 


7 responses to “I’m well enough to work!

  1. Oh dear. I wonder if you can “prooflisten” audio books. I know that publishers that release audiobooks need someone to listen to the entire book to make sure that there’s not a spot where it jumps around or where the audio can’t be heard.

    Or can you get employed as a columnist on life as a young adult or something? Review audiobooks?

    Or what about one of those jobs where you mindlessly shuffle paperwork? Here, process all these payments. If you don’t, we’ll automatically send out notices to people again telling them to send in their payments. Oh wait, can I just conveniently forget to process payments?

    Sorry. Arrrrgh. This is when I hate the sterility of bureaucracy.

    • Agh, I honestly wish I could do some kind of job :( I’m trained as a computer programmer which pays awesomely well, but you need to be able to function to do it. Fact is, I’m too ill to do any kind of meaningful work. I can’t even leave my bed without exhausting myself. Who wants to employ someone who has to work from bed, horizontally, and can only do an hour and a half a week? Even if there was someone who would do that, I’d be destroying myself to earn what, £10 tops? That’s not enough to cover a hole in any budget. £10 would be very generous for that amount of that kind of work anyway, my mum was paid 30p a paragraph when she worked freelance :( I’ve been trying similar things to that like reviews and surveys, but I’m bringing in like £5 a month if it’s a good month.

      This particular benefit wasn’t even going to give us money for all those cool extras in life like food and heating, it was in the hopes that I’d get NI contributions to pay towards a pension. But hey, ME shortens your life expectancy by a good 20 years, so I probably won’t be living long enough for that to matter!

      I wish I was able to work :( I loved my job, when I had one. But the fact is I physically cannot manage it. I’m not even well enough to get to the job centre and sign on.

    • Ah yeah, so the point of the piece is, I’m not well enough to work. At all. I can’t wash myself or feed myself properly, I can’t walk. Just leaving the house exhausts me :( they forced me to go to an assessment centre even though my doctor told them it would deteriorate my health (it did, but they don’t care). They made me wait for over an hour, even though I told them in advance that I can’t sit up that long- I asked for a bed and they wouldn’t give me one, they told me that I couldn’t lie on the floor but I didn’t exactly have a choice since I can’t sit up that long. They had me assessed by someone unqualified to assess me – I have a neurological disease, thus their own rules state that I need to be assessed by a qualified doctor. I wasn’t. They ignored what the medical professionals who actually know about me and the disease told them, and said that I was lying about being ill because they couldn’t detect muscle deterioration in my legs. Funny that, since ME doesn’t usually cause muscle wasting, even in patients who have been bedbound for several years. Which they might have known, had they been qualified to assess me. But they weren’t. And they don’t care about it. All they care about is making the numbers of sick people go down by claiming they aren’t sick at all. It’s corrupt and evil. People in this country are dying because of them, and dying despite them claiming there’s nothing wrong with them. It’s sickening, sickening, what our government has done to us. If you judge a country by how it treats its most vulnerable, ours is despicable.

  2. I told you that I hate bureaucracy. What disappoints me the most is that with a disease like ours, you have to fight to exist. If you didn’t, you would have already become a couch potato long, long ago and wouldn’t even have a diagnosis, let alone know about getting on disability. There’s nothing we want more than for this problem to go away so that we can work.

    I wish I could send you money and really make a difference. Or maybe I could send you something that you need so you don’t have to spend money on it???

    I got paid 85 cents per paragraph for a freelance writing job once. That was considered pretty good, but even then, you had better write pretty fast if you want to be able to pay for something other than nail polish!!


    P.S. When you’re in bed, are you asleep, fatigued, sleepy? Or are you in so much pain or lacking in energy that there’s no way you can get out of bed? ‘Cause we (your online community) might need to figure out how to make living in bed happy for you….

    • Yeah, generally jobs you can do while lying in bed don’t really pay. It’s sad :(

      Hmmm… well I like to think that I’m not this sick and I’m just conserving my energy, you know ;) but I am pretty much bedbound. I can get around the house a little, like go to the bathroom or kitchen, but I don’t have any freedom of movement. I mean like, I can get up and shuffle to the kitchen (most days), but I can’t just go back and forth however much I like. It exhausts me. I could move to the sofa to sleep there instead, but it wouldn’t make any difference to me being stuck lying down (my bedroom is blacked out which helps a lot with headaches so I prefer to stay here). Most of the time I’m asleep, if I’m not asleep then I’m fatigued and in pain. Just that all-body exhaustion that keeps you from moving or doing much at all. Everything just wears me out so much, bleh.

      I used to spend a lot more time being awake but in so much pain I couldn’t move or tolerate light or anything, but I’ve learned to cut out unnecessary things like getting dressed, having bright lights on, sitting up, so the net result is most of the time I don’t feel that awful. Until I try to do something, I mean ;)

      Whats it like for you? Before I had the crash or relapse or whatever, I was tired all the time but I could function pretty well. I just slept a lot more than normal people.

  3. Lydia,

    I’m not sure I’ve ever been that bedridden long term (or maybe like you, I use fancy rhetoric to convince myself otherwise.) Most of the time, I’m really exhausted and sometimes it’s even hard to think. I tend to be in a lot of dull pain, but since I started taking pain killers on a regular basis three months ago, it’s kept it at a regulated level at least. I have definite depression as well, so I have to make sure that I’m doing things to keep me sane.

    My goal is to either get out of the apartment or interact with someone almost every day of the week. Some days, that means phone conversations, other days I literally walk out to the balcony for thirty seconds, other days I actually go to vespers and the like.

    When I was on partial bedrest, I learned to cut out those “unnecessary” things that make up a lot of daily life. I listen to a lot of audiobooks (a bunch of good ones at librivox.org) and music. A lot of my friends have sent me recordings of them singing, so I still feel connected to them.

    If you can afford to not work, you could see if you can volunteer in some capacity for a charity. I found a local charity that provides materials for lap quilts, I create whatever I want, and then they give them to chronically ill children. So basically it’s all on my own time and at my own pace, but I feel like I’m part of something bigger.

    I always tell people that ME/CFS is a first world problem. Why? Well, if 90% of the people are suffering from malnutrition and you have one person whose body doesn’t process food properly, that other person will get lumped together with the malnourished and people will focus on getting more food to these people. In countries where almost everyone has access to food, that one person stands out as an anomaly. It means that we’re acutely cognizant of how different we are from the rest of society, but at the same time, it means that people are actually working to solve the problem and to figure out proper management techniques. Even though the world doesn’t figured out the best way of dealing with us, I feel fortunate to have some resources at my disposal. Diseases like ours reveal that the world isn’t perfect and there are many unresolved issues. But if you accept that we live in an imperfect world, at least we have people who care, sanitary living conditions, education, and technological advances like the internet!!

    Does that answer your question?

    • :) it does, thank you! And it makes sense. And thank you for the audiobook link! I can’t read long cohesive things so books are out of the question, and I miss reading sooo much.

      I sadly can’t afford not to work, but as I’m physically incapable of it there’s nothing I can do about it.

      The lap-quilt charity sounds great! I’ve been (slowly) making baby clothes for the ever-growing population of newborns at church. They’re super expensive to buy, and yeah it gives me the feeling that I’m still part of something. If I ever run out of new parents then there’s a similar baby quilt charity I have bookmarked. The problem is I get caught up in making stuff and ignore the pain, and then lose the use of my arms for days at a time, oops.

      I also have been meditating on how lucky I really am, despite all this. I have a place to live and a husband and a kitten, and my food might all be cheap and microwaveable but I’m not starving to death. And I have the internet <3 I have a lot to be thankful for :)

      What I find helpful is always to have something to look forward to. I hate looking forward and just seeing another 30 odd years of being trapped in bed, followed by heart failure… so I make sure I have something good to live for. I've been depressed before and it's horrible *hugs*, I'm lucky not to have fallen into it again with this, and honestly I'm quite surprised I haven't.

      I'm trying not to grasp things that are too big, because I tend to overestimate what I'm capable of and make myself worse. But hopefully this way, I'll end up making myself better :)

      I'll drop you an email, it makes more sense than overflowing irrelevant comments on a blog page!