Saturday, 17 September 2011

This isn't me, it's M.E.

Firstly this post has taken me over a month to write. I've come back to the start and edited this little fact in because I already have comments on this blog which read 'if you're fit enough to winge in a blog about getting money you're not entitled to while lounging around in bed, then you're fit enough to work.' I'm pretty fed up with them because it shows that you have not read this blog and you're just buying into the media-spun lies that all disabled people are fit to work, living in luxury and draining the economy dry. Don't bother posting any variations on that theme because this is all the response you'll get.

The symptoms of CFIDS*/M.E. are many and varied. They also vary day to day, week to week, month to month and year to year. This is not a convienient excuse; it is medical fact.

None of the below is exaggerated at all.

I don't get a bit tired. I don't even get as comfortably tired as you'd get playing football on a Saturday afternoon, or going to the gymn. I get as tired as a crack troop trainee after 4 days of basic training; think of the girl in GI Jane, so mind numbingly exhausted that she can't function. So exhausted that I'm past the point of sleep and almost passing out. Unable to speak, think, move, or even know who I am or what day of the week it is. How much effort it takes to put me in that state varies from day to day, week to week, month to month and year to year. It is always totally disproportionate to the effort I've put out and it always takes at least 2 days to pass, unless I've pushed past the point of break and put myself in active 'viral' mode.

Unrefreshing sleep.
I don't feel better when I wake up, no matter how long I sleep. Most of my symptoms are at their absolute worst as I wake up. I always wake up feeling as if I have a severe dose of the 'flu (including a registering high temperature on my worse days) plus a five fire alarm hangover.

I am always in pain. I get joint pain, muscle pain and crippling headaches. I can't sit with my feet on the floor, upright in a chair or a car seat or my wheelchair for more than an hour without severe pain. It begins to be sore as soon as I sit in that position and gets gradually worse over time. After an hour I am desperate to sit in a supported lean with my feet and legs at the same level as my bum. My feet and legs start to turn blue if I sit with them down for too long; a physical symptom.

Any repetative motion; lifting food to my mouth, typing, using a computer mouse, trying to cook, washing myself, using a cloth, causes more pain. Generally the locus of that pain is under my left shoulder blade, towards the middle of my back. It feels as if someone is stabbing me slowly with a red hot knife.

I've always got the sensation that ants are crawling under my skin. Sometimes it's so unbearable I can't wear clothes. I can never take a shower; the sensation of water hitting my skin feels like being beaten with nettles. I can't bear to be touched, even the lightest pressure feels like being stabbed. I've learned to hide the pain reaction most of the time and on my better days when I can wear clothes it isn't so bad.

I take painkillers to ease this, but they don't take all of the pain away. The best I can get to is about 3 - 4 out of 10 on the pain scale and at that level I'm pretty much knocked out by the painkillers.

Muscle fatigue.
Everything requires more effort than it should. I feel as if my limbs are lead weighted and there are elephants on my back. The slightest exertion has me sweating and my heart racing as if I'd run a mile. If I do anything at all my muscles will very quickly stop working. I can loose grip on things, stumble and fall. The muscles in my eyes are currently affected by this and I get double vision when fatigued. This has been confirmed by a hospital specialist using machines that measure double vision that can't be faked; it is a physical symptom. My hands swell and cramp, muscles all over my body cramp and twitch constantly. I joke that I feel like Arthur Dent did after his first hyperspace leap 'like a military academy; bits of me keep passing out'.

Brain fog.
I am as unable to focus as someone who is drunk or stoned. It feels like trying to think through treacle soaked cotton wool. My short term memory is shot to hell.

Nausea and Dizziness.
I feel as if I'm on a rollercoaster on a ship in a storm. I take medication to help with this, but those medications cause drowsiness so I try to limit how much I use them. I am woken by this (including having to throw up) constantly.

Speech difficulties.
I use the wrong words in sentences; it makes perfect sense to me when I'm saying it. I've said totally non-sensical things that made perfect sense, like 'can you get the lawn mower lower so I can get out of the bath?' Of course I wanted the grab rail down. It's as embarrassing as hell, especially when people start laughing and I don't know why, totally confusing. Phone conversations are a nightmare. I can't see the other person so I don't know if I'm making sense. I have to focus very hard indeed on every word, which is totally exhausting.

Sensitivity to light and noise.
There are days when the slightest noise makes my head explode with pain. A little light makes my eyes stream untill the skin next to them splits and weeps with the salt.

Active 'viral' mode.
Every couple of weeks, more often if I'm doing too much, I'll get what appears to be a viral infection. I get a sore throat, high temperature (103-104 deg F), fever including a cycle of shivering (so badly I really scare one of my unofficial carers when ever she sees it. Someone with malaria may be as bad) and fever spike sweating. I am totally unable to do anything except lie in bed, throw up, shiver and sweat. It takes about a week to get back to my normal levels of activity, longer if I have to push myself to do anything in this state.

What this all means.
I can't drive. I can't go anywhere by myself (I can't get about even in my wheelchair solo.) I can't cook for myself, not even reheating myself a meal in the microwave or make a hot drink safely. I can't bathe myself, dress myself properly, clean my house or do my laundry. I can't manage my own money, deal with paperwork (I can't hold a pen to write) or even reliably sit in front of a computer to produce a piece of writing in a short time. I can't sit to watch TV; it doesn't focus me out of the dizziness and nausea enough to concentrate.

How do I cope living alone? ("she's lying; it's not that bad." comments ahoy...)
I have a dedicated network of friends and neighbours. It's not perfect, but it works up to a point. Two of my friends (a married couple) take turns to sleep over in my spare room when I'm at my worst and are always at the end of a phone. I have food I can eat cold straight from the fridge or cupboard (tuna light lunches we salute you). I can even make myself a hot drink using water from the hot tap at a real pinch if no one has been in to fill my flask with hot (but below scalding temperature) water or I can't manage the twist top or lift the flask. If I can't get dressed or undressed I sleep in my clothes until I have help again. I 'wash' using baby wipes.

There are services I can't access. It's useless getting a taxi to go anywhere unless there is someone to meet me at the other end because I can't push myself in the wheelchair. I can't get to a bus stop from home. So the doctor's surgery, dentist, citizens advice, post office, hydrotherapy pool are all off limits unless I have one of the 'network' free to help me. One of them works away all week and the other works shifts. They do all they can to help in their spare time and at weekends. They don't have time to sit down and fill in forms for me on top of everything else they already do unpaid, nor can I justify asking them to swap days off or take unpaid leave to run me about to appointments.

I'm not fit to work, even part time from home. I couldn't set up an ebay business or write for a living. I'm simply too ill.

I was once fit and healthy. I used to cycle 25 miles every day to and from a physically demanding job. At 17 years old I could beat the olympic qualifying time for swimming front crawl. I used to walk for miles with my dogs every day. I have written a book, although it was not good enough to be published. I have had long periods of remission from M.E. when I declared myself fit for work and came off benefits. I have worked as a sales person, kitchen designer, and even on a factory production line to put food on my (grown up and left home) family's table and presents under the Christmas tree rather than claim benefits when I was made redundant.

If you feel motivated to post any comment about malingering, or a fake illness that's all in my mind, know now that this could happen to you. Tomorrow you may be just as ill as I am and need a state support system that simply does not exist because you didn't help fight to keep it. The illness may be mental or physical and actually it doesn't matter either way. The symptoms of a mental illness are just as 'real' as a physical one, and just as stubborn to treat. Especially when the cause is still unknown because biomedical research is being underfunded and pyschological research is all that's being done. If you only look at a problem from one angle you can never find the whole story for solving it.

I hope and pray with all my heart that you never have to walk a mile in my shoes, however nastily you choose to comment on my life.

*chronic fatigue immune dysfunction syndrome

1 comment:

  1. Heya. Just come upon your blog by chance...and I just wanted to say that your initial point `then you're fit enough to work.' is something that I`m well aware of myself. To explain, after 35 years in the NHS, I discovered that I had acute on chronic Hep C. with quite bad cirrhosis.The first course of treatment failed, and I`m now on my second. Reason I mention this is that I have some (not all, obviously) of the symptoms you mention...brain fog, EXTREME fatigue (Its quite common for me to sleep for 4 or 5 hours after walking a few hundred yards to the shops), unrefreshing sleep and pain. Having said that...I had a member of my staff who was diagnosed as ME. Together we worked out a `plan` for her to work. She explained what hours she thought she was able to manage and we worked around that...but slowly those hours got fewer and fewer. I hope you don`t take this the wrong way...but between Hep C and ME..I got the lesser of 2 evils..
    Like you, I get extremely irritated by stupid comments about my competency to work. If I COULD work, I would...but I can`t.

    Hope you have more `good` than `bad` days...