The Hidden Village of Aspergers

May 15, 2011

It’s ME again, in-sig-nificant ME again

Filed under: m.e. awareness — kankurette @ 7:14 pm

Apologies for having been so crap with this blog lately. I really should post more, but I’ve been failing in the inspiration department. This entry isn’t going to be about Aspergers or mental illness, however – as I am writing this, it is the end of ME Awareness Week, as a part of ME Awareness Month.

I have ME. Or maybe it’s Chronic Fatigue Syndrome. Some would argue there are differences and it’s a question of semantics. I also have Postviral Syndrome, or Postviral Malaise, depending on who you talk to, since the madness began after I came down with suspected swine flu in the summer of 2009, and when I returned to work after a month off, something was clearly not right. I was more tired than usual – I nearly fell asleep under my desk – and had no energy, and I kept having to go home because I could not last a full day. Eventually, my bosses agreed to cut down my hours as I was still well enough to work part-time, and I have been part-time ever since. I had numerous blood tests and neurological tests, and after six months with no sign of letting up, I got an informal diagnosis of CFS/ME. It has now been two years, and it hasn’t gone away. Whatever name you call it, it is a horrible thing to have. I know I’m one of the lucky ones – I still have a job, I can look after myself (although housework doesn’t always get done), I can cook, I can do a bit of exercise, I can wash my hair without being in too much pain, I can carry shopping from Sainsbury’s, I can sit through a synagogue service. But I’d be deluded if I said it hadn’t significantly affected my ability to do things.

I knew what ME was way before I got sick, and I wrote an article about it detailing the experiences of my friend Chloe, who I’d met through a Space website and who had ME. She was more severe than I am; although she’s better now and is at university, back then she had to use a wheelchair, she couldn’t go to school, had to take regular rest breaks and was exhausted for days after going to a Space gig where we met the band. At one point, she could not even talk to me on the phone because the Liverpool health authorities, in their infinite wisdom, had given her some exercises to do which only made her worse. She was involved with the Association of Youth with ME (AYME) and sent me some AYME stuff, so that I could get more of an idea about what the illness was like. I admit I did get angry sometimes when I wanted to go out clubbing with her, only to arrive in Liverpool and find she was too unwell to leave the house. I cringe now when I think about it. It was rotten of me and I apologise.

I found myself bailing regularly on friends when I got ill. At first, I was able to go to the Wendyhouse in Leeds and last the whole night, although I paid for it afterwards, but as time went on, the Wendyhouse got too much, and I found myself having to cancel on the night when my body just couldn’t handle it. I missed countless synagogue services and days off work, and after I went to the Latitude festival in 2010, I was ill for days. I learned to realise that I had to be careful how much I did. Even if the tiredness didn’t immediately kick in the next day, it would kick in sooner or later, and I would have to rest up and kick myself for being so bloody stupid.

ME is not just tiredness. It has been described as constant flu, or the equivalent of feeling like some bastard has pulled a plug and all your energy has drained away. Your body hurts all over, like you’ve been in the gym, even though you can’t remember the last time you went. You have trouble remembering people’s names or small details or things that you could remember before (and this has bitten me in the arse several times at work), you think you’re OK until midday rolls around and suddenly, you just want to go home and crawl into bed. You’re tired, yet you can’t sleep. Your digestive system hates you. You dread your periods because the heavy blood loss makes it harder for you to function, and your period symptoms are magnified, as is your sensitivity to light and noise, which is pretty high anyway, what with the Aspergers as well. You find yourself coming down with more colds and headaches than before. You sometimes feel as though you’re walking through treacle, or a very thick mist. Your feet feel as though your shoes are made of lead, and your arms ache and your eyes ache and sometimes you have good days, and sometimes you have days where it’s all you can do to dress yourself and drag your sorry arse to the office to do four hours’ typing, and pray that you will not have to do overtime as you know that when you do, by the time you get home, you are just about able to heat up Covent Garden soup and have a bath and maybe call your mum if you’re still capable of speaking and then sleep.

And I’m not exaggerating. This is me. This is how it feels. It is real. I am not being a hypochondriac, I am not being lazy, I am not making excuses, it is not all in my head – the feelings of tiredness I got with depression, shitty though they were, were not on the same level as how I feel now – and no, I will not fucking feel better if I go for a nice run, because sometimes even doing half an hour on the crosstrainer results in my body being racked with pain. I am applying for another referral to the PARS service in Manchester, because I do want to exercise, but at a pace and level I am comfortable with. No, it is not because I am white and middle class. So working-class and BME people never get ME, then? Of course they do. ME does not discriminate.

Yes, it is a pain in the arse to diagnose, but no, that does not give some arsehole doctor the right to joke about how people with CFS/ME are no fun to be around, suck the life and happiness out of everything they touch, and just want attention and/or are making it up anyway. Yes, I can be a miserable git about 99% of the time, but even I have my limits, and thankfully, it’s not cost me friends the way mental illness did. It helps I have friends who either have ME, have had it or have fibro or something equally horrible, and understand that sometimes Lotte needs to rest up or go off and have a lie down somewhere. My family have been fantastic about it, thank G-d.

I apologise if I come across as angry and bitter, but it is hard not to when you know you are ill, your days of lying about illness because you hated school and wanted a day off are well and truly behind you (and not just because you’re not at school anymore), and you know there are always going to be people who think they know your own body better than you do. I know my body. I am beginning to learn, even if it is the hard way, just what it can and cannot take.

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