The Hidden Village of Aspergers

September 27, 2011

I wish I could articulate myself more

Filed under: m.e. awareness — kankurette @ 7:51 pm
Tags: , ,

I wish I could articulate myself more when I go to the doctor and try to explain why I want a proper diagnosis.

I wish I could articulate myself more when well-meaning people tell me that exercise will make me better, and that I should try running or horse riding or soft ball or (insert physical activity here), even though I went swimming last week, did twenty laps, and was aching and tired afterwards.

I wish I didn’t trip up over my words, stutter like Porky Pig, forget my train of thought. I wish I could talk clearly and concisely and non-confusedly about the constant pain I’m in, and that ME is a real illness, and no, exercise does not make it better, it makes it worse. Actually, this applies to stuff generally. Put me in front of a computer and I can type for England. Put me in front of a phone and I get nervous and start stuttering and ‘um, er, er’-ing all over the place. I’ve always found writing easier than talking. It helps that I can go back over text and delete things, correct typos, change a bit of wording here or there – none of which I can do when I speak. I can put more thought into it over time rather than just thinking on the spot.

I’m going through a bad patch at the moment. Typing this is playing merry hell with my hands and wrists, and my legs are aching. For the past couple of weeks, I’ve been suffering from nasty joint and muscle pain. It’s like the feeling you get after a good workout at the gym, after lifting loads of weights…except I haven’t been to the gym. The only possible trigger is a recent holiday I went on to my old home of Brighton, and I did walk around quite a bit. I’m also getting more dizzy and nauseous. When I took my laundry out of the washing machine, I had to sit down for a while because I felt so sick.

To say I’m pissed off is an understatement. I am really, really fucking irritated and frustrated. Tomorrow, it’s Erev Rosh Hashana, the Jewish New Year. I sing in the choir at my synagogue, and I’ve missed tons of Saturday services and rehearsals due to illness. I was one of the subject of a rather nasty email sent around about people who never bother to show up, who get hysterical and only seem to want to appear when they’re on show. She was referring to panic attacks I’d had in past rehearsals, where I’d run out in tears because I was so frustrated and scared the concert or service would go horribly wrong. I did my best to justify myself, explaining I had an illness that meant I was often too tired and/or in too much pain to do much, but a fat lot of good it did me, and I ended up bursting into tears at our AGM and running out, although luckily most of the choir took my side and said that the woman who wrote the email was in the wrong. But none of them understand exactly what the hell is wrong with me and why I can’t do the whole Yom Kippur service, or why I miss so many Saturdays.

I’ve also had to turn down countless nights out over the past two years, work is getting harder and harder, I’m missing the belly dance classes I recently started because my body hurts too much, I’m terrified of gaining weight as I’ve recently started Slimming World, oje of my colleagues is off next week and I’ll be expected to cover and do full days (although my boss, G-d bless her, is going to intervene and request that I do not have to cover for anyone), and I want to scream. I broke down in tears at the doctor’s today because I was so fed up. He just gave me a sheet on CFS/ME, even though I’ve read resource after resource after resource and noted how many of the symptoms tally up with mine, and put me on Amytriptyline to see if it’ll work. G-d damn it, I tried my damnedest to explain what the hell was wrong and why I was in the surgery and that things were worse than ever, but somehow it must have come out wrong. What do I need to do? Draw some cute little pictures? Get an advocate in?

I originally intended this blog to be about Aspergers, but let’s face it, all the things wrong with me are blending into one not-so-glorious whole these days. They are demons, feeding off each other, and since I can’t slay them, the next thing I can do is, to quote Catatonia, clothe them and feed them, and hope they’ll keep the noise down when they’re having one of their house parties. In other words, I manage my Aspergers, my depression and my ME the best I can, but sometimes it gets too much.

When people say fuckwitted things, even if they’re genuinely meaning well, I have to bite my tongue before I say something we’ll all regret. I know they’re not being cruel, but it drives me mad constantly having to justify and justify and justify, like the time when some chuggers came to my house in the afternoon and asked me why I was wearing a dressing gown, and I had to explain that I had a chronic illness and was resting, and of course they had no clue.

Maybe in future I should write down a list of points to discuss at the doctor’s. I’ve done it before. It can only help so much.

I’m off to have a bath in a bit (so much for me being ‘unwashed’, ha ha). The next few days, where I swap from Citalopram to Amytriptyline, are going to be…difficult. I pray that G-d gives me the strength to get through it, because I really need all the help I can get.

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