The Hidden Village of Aspergers

March 8, 2014


You treat me like an influenza
You think I’m an idiot cos I’m not in Mensa
You treat me like a tonsillitis
I’m a pain in the neck and I’m not quite right

Note: this post will be shorter than the other miniblogs as I’ve already blogged on the subject of ME.

We love our routines, we people with Aspergers Syndrome. We do not love it when we have to adjust to a whole new routine. When I got sick with swine flu in 2009 and had to take a month off work, and started feeling tired and drained and achey all the time and ended up discovering I had ME, my entire world came crashing down around me. My work cut down my hours and consequently, my salary. I had to blow off friends for gigs and nights out. I slept more and found going to the gym difficult. It was a bit of a shock, but gradually, I got used to it. At least my mum backed off a bit about me being overweight and my house not being very tidy. Even now, when I’m typing this, I have pains in my arms.

I also had to deal with a lot of stupid comments about the illness. People in the choir at synagogue told me that I was too young to be tired, and I hated being made to feel guilty for constantly missing choir practices and services due to being ill. Maybe this is the paranoia talking, but there were women three times my age in the choir and a woman with hip problems, and I wondered if the general feeling was ‘they can make it to synagogue, what’s your excuse?’ I got told to try running, jogging, Zumba, horse riding. I can’t run and I’m scared of horses, not to mention that riding lessons are not cheap. They thought exercise would make it better, but it’s one of those things where you have to be careful; one of my friends, who was far worse than me, had Graded Exercise Therapy and suffered major setbacks as a result, while I myself was in pain for days after a pole dancing session. That’s the problem with having an invisible illness. If you’re not visibly disabled, you are assumed to be a fraud, and it doesn’t help that the likes of Julie Burchill and Rod Liddell think we’re liars, scroungers and fakers.

How does it intersect with Aspergers? Not much, really, although stress can make me tired, and combined with a draining condition like ME, by the time I get home from work, I just want to sleep. Combine that with depression, and you have a two-headed beast. The more unhappy or stressed I am, the more tired I am. I feel pretty drained now, for instance, due to my team getting thrashed 4-1 by Arsenal, and having had a very hard week at work which began with a horrible, frightening meltdown which resulted in cuts on my arms and cheek, and sore wrists and hands. All I can do, really, is ride these periods out. I’m seeing We Are Scientists at the Ritz tomorrow, so I will be resting up in preparation. It’ll be my first gig of 2014, and I can’t wait.


January 1, 2014

And 2014 begins.

I am sitting here, in my kitchen, playing Farm Heroes. The happy, smiling faces of the cartoon fruit and vegetables make me sad for some reason. I think it’s because I’m feeling a little flat and empty after spending time with my friends and family. Post-Christmas comedown and post-exertional fatigue (I’ve not been exercising, but I have been busy) has kicked in; I just want to sleep. I’m amazed I even can sum up the brain power to type this. I didn’t go out last night because of it. I just stayed in and watched Wayne’s World.

So, 2013. It’s been hit and miss. On the plus side, I met new people, went to Barcelona alone and had a fantastic time at Primavera. I became a lot closer to my stepdad, not that we weren’t in the first place, had a fun time with the family at Ness Gardens (rain notwithstanding), got to see a football match for the first time in years (it was Cambridge United, not Everton), and saw more Space gigs than you can shake a stick at. The last gig I saw was on Halloween in London, and after talking to him backstage, Tommy Scott got me to come onstage with him for The Ballad Of Tom Jones. We both hammed it up, and afterwards, he gave me a hug and told me I’d done the song proud, while Franny Griffiths smiled at me and Phil Hartley also gave me a hug backstage, and the audience were great. I still can’t quite believe it happened.

On the down side, my best mate moved to Oxford, I had a horrible panic attack at a Space gig, my mum went into rehab, I stopped going to synagogue because choir stressed me out, and I had to deal with problems at work, delusions and paranoia. A good deal of it is to do with Space. I find some of the band very hard to read and worry that they dislike me and do not appreciate me coming backstage, although Franny did say at the Hebden Bridge gig that he was cool with it. Then again, they haven’t told me to fuck off, Franny actually got somewhat irritated with me when I called myself a ‘dumb whore’ and told me to stop putting myself down, and the one time I did get kicked out of the dressing room, all the other fans who were there got kicked out too as the band were getting changed, which is fair enough. I also rely on alcohol as a coping mechanism. It’s not a case of being starstruck; I know Space are only human. It’s more a case of worrying a lot about appropriate or inappropriate behaviour and how other people might see me.

Communication is a problem I have in general, and when I’m able to gather my thoughts more coherently, I’ll blog on it, because sometimes it’s like trying to navigate my way through a forest, blindfolded. I’m not always good at expressing myself, I can’t always detect nuance and like Katniss Everdeen in The Hunger Games, I instantly suspect the worst of people and find it hard to trust others. I have to remember that just because some people hated me behind my back, and were only afraid to tell me how they really felt to my face because they knew I was mentally ill and feared I would flip out, does not mean everyone is like that.

I have plans for this year. I’ll be going to Space in March, at London, Liverpool and Manchester, and aim to get over my fear and paranoia. I’ve also got Nine Inch Nails and Primavera Sound coming up – I’ll be going back to Barcelona – and I plan to go down to Cambridge for my birthday, as well as visiting my auntie Chris, my dad’s sister, at the end of this month. I may well be going to Berlin as well – I haven’t decided yet. Hopefully there will not be a repeat of the unpleasant experience at Schonfeld Airport.

Also, I had a bit of a meltdown at Christmas when I got into an argument with my mum. She wants to get me a cleaner, as I have trouble taking care of my flat. I admit I have mixed feelings about this; I’m worried some of my friends will hate me for it and call me a spoiled brat, and I feel guilty for not being able to clean as much as I would like. I admit it; I am not a tidy person. I put cardboard and plastic in the recycling bins, I cook and wash the dishes, I change my sheets weekly and do my laundry regularly, I hoover, I clean the lav (again, not as much as I should), but it’s not enough. I haven’t cleaned the skirting boards, I barely wash the floors or dust. Mopping makes my back ache, as does any work on my knees. I think it’s a case of feeling like I can’t be that bad, that I’m not disabled to the extent that others are and I’m privileged and it could be a lot worse…and then the tiredness hits and I can barely think straight and I just want to crawl into bed. There’s a lot of internalised ableism and foolish pride going on as well. I’m still ashamed to admit I need help in some areas. When a lot of your friends are mentally ill and/or more understanding than most people, you become so used to that world that you almost forget how the majority of people see you. Cutting my arms and pouring boiling water over them at work seems normal to me, as does throwing up in the toilet after a binge…but to other people, it can come across as a bit scary.

I’m staying on the Venlafaxine for the time being. I’m not 100%, but let’s be realistic, I’m probably going to be on meds for the rest of my life. Still, I have some control over the delusions; when the Liverpool fans on my Facebook and Twitter sneer at Evertonians, I have to force myself to remember that it’s not personal and they’re not trying to get me, for instance. Hopefully it will get better. Fingers crossed.

July 26, 2013

Barcelona. Believe.

Back in May, I went to the Primavera Sound Festival in Barcelona. My brother has been going for years, and although it’s less mainstream than what I’m used to (Reading and Glastonbury), I thought about going myself last year, and after a moment of self-pity on New Year’s Eve, I thought, “Oh, fuck it,” and booked a ticket. There were three reasons for this. Firstly, Blur – who I’ve loved since I was in primary school – were playing. Secondly, up until Belfast and Berlin last year, I hadn’t had a holiday since 2005. Thirdly, and most important, I wanted to see if I could manage in a foreign country, on my own, without my mum or friends to help.

Of course, Barcelona is not on the other side of the world, it is only two hours’ plane journey away, and there were people I knew who were in the city at the same time: friends from home, my auntie and uncle, and my brother (though he was the only one I ended up seeing). But it was still a big leap. Although I can read Spanish, I cannot speak it as well as German. I had to sort out accommodation and flights on my own (my mum and her boyfriend arranged everything in Berlin, and I had the help of two friends when sorting things out for Belfast). I would be staying in a youth hostel, sharing a small room with strange people. I had stayed in hostels before, but generally I’d been with people I knew. I would be managing my own finances and negotiating a festival site and the Metro system, and I would be adjusting my body clock. While bands at British festivals start around midday, the bands at Primavera do not generally start until 4pm, and the headliners don’t come on until the wee small hours. Blur, for instance, were on at 1:30am. My Bloody Valentine, who I didn’t see, were on even later. (As it happens, I ended up pulling an all-nighter on the Friday, as I wanted to see Blur, them being the main reason I was there, and I had to stay on the site as the metro stopped around 2am, but luckily there were bands on until 5am). I would become a nocturnal creature.

I am proud to say that I did it. I spent a week in Barcelona, staying in a youth hostel I’d found online that had got good reviews (it’s the Albareda Youth Hostel, if anyone’s interested, and I would definitely recommend it). I lived mainly on cheese sandwiches from Lidl, pizza and the odd bit of festival food – not super healthy, but I’m not keen on cooking in other people’s kitchens as I don’t know where stuff is. I pre-booked a travel card and managed to get to grips with the metro (being in Berlin helped). In the evenings, I hung out with my brother and his mates at the festival and got mildly twatted on some gin they’d sneaked in, as well as going for a drink with them before it started. I spent most of the days sleeping and reading, as I was too tired to do much sightseeing (except for Parc Guell, as I hadn’t seen it before, and I nearly got lost in the damn place, but managed to find another entrance after wandering around a residential area for a bit). I was introduced to the joys of the Breeders, Neko Case, the Wedding Present, Neurosis, Evans The Death, The Knife, and the Wu-Tang Clan (and I even managed to get near to the front without having a panic attack), and watched Blur do a 13-centric set. Parc del Forum is by the sea, and listening to Blur doing This Is A Low as the sea crashed on the rocks in the background was, frankly, magical.

The only major panic I had was finding out I’d left my email from Seetickets back at the hostel when I was going to pick up my ticket (though I managed it the next day, and I found out where Parc del Forum was, so it wasn’t a wasted journey) and getting to the airport on the way back, as I’d gotten confused about train times and had to hail a taxi, and I did have some language problems as Spanish does not come naturally to me, and I got into an argument with a rude idiot at Barcelona Airport, but I didn’t have anything like the problems I had at Schonefeld. My body was out of kilter for a week – standing for ages did not help, and it was particularly bad during The Knife’s early morning set on Saturday when I wanted to dance, but everything from the waist down hurt. Still, I did it. I managed in a foreign country on my own. I beat myself up a lot, but for once, I am actually quite proud of myself, because I learned that I can manage. I am not totally helpless. Being able to book accommodation and flights and time everything and manage my finances for a week is a huge step for me. It required massive amounts of planning and research and talking to people who’d been to the city, including Franny Griffiths, the keyboard player from Space and a former resident who knew the city like the back of his hand. It all paid off. I came home slightly less pasty than before and with a bag full of stinking socks and a well-thumbed copy of Tori Amos’ Piece By Piece, which kept me entertained during my down time.

If I can do this, who knows what I can do next? I could go to Berlin, another city I love, on my own (and if I go to Schonefeld Airport, at least I’ll be prepared for dealing with evil airport staff). I could go to a place where I don’t speak the language, or that’s further away from home – I’ve been talking about going to Thailand with one of my mates in a couple of years, when both of us are better off. I appreciate not everyone with Asperger’s can push themselves out of their comfort zones, and it isn’t easy. But I had to do it. I had to know what I am capable of, and I had to prove to myself that I can manage on my own, and I did.

May 1, 2013

Just because I am disabled does not entitle you to make stupid comments

As it’s Blog Against Disablism Day, I’m going to repost some comments that I originally posted on Twitter under the #heardwhilstdisabled tag. These are all things that have been said to me as a result of my having ME.

“You’re too young to be so tired” – said by countless people. Yes, I know it’s bizarre for someone in her late twenties to be tired all the time, but it does happen. There are people younger than me whose ME is so bad they can’t even feed themselves. There are people who’ve died from ME, for fuck’s sake, some of whom are around my age. It also makes me feel awkward when I see older people than me who can still make it to synagogue while I’m at home resting. It makes me feel like I’m not trying hard enough.

“I have to do all this work because you’re ill” – or words to that effect, said by one of my colleagues. So they can’t use me as cheap cover because I only work part-time? That’s not my fault. Would they rather I just worked myself into the ground and ended up having to leave? I’m not even supposed to be doing work for the Manchester office anyway. I’m not employed by them.

“I wish I could go home early like you” – said to me by the same colleague. You know what I do when I leave work? I go home – sometimes after stopping off at Sainsbury’s or my local greengrocer to buy food – have lunch, maybe go online for a bit, and then sleep for a few hours. If you want to go home early, you can take my reduced wages and my disability while you’re at it. Have fun!

“You’re having a relapse? Well, UN-relapse then” – said to me by a woman at synagogue when I explained that I didn’t know if I was going to be available that weekend because I was having a bad week healthwise. If only it were that simple. This is one of the reasons why I’m very seriously considering quitting the synagogue choir – I hate not being able to give a straight answer as to whether I’ll be able to come on Saturdays. How will I know?

“Stop yawning, it’s fucking annoying. Do some work if you’re so bored” – said to me by a colleague. I must point out that I was actually typing an attendance note at the time. I had also not had much sleep. Yawning is an involuntary thing for me, and it is not a sign of boredom, and no, you are not being funny when you ask me if you’re keeping me awake.

“You should do (insert exercise here), it’ll make you feel better / you’ll be fitter if you do more exercise” – said to me by various people. No, I do not want to go jogging / horse riding / Zumba dancing with you. I have to be careful how much exercise I do. I did pole dancing classes for a bit, but the last time I went, I had to sit down because I felt so dizzy and sick, not to mention the strain it puts on my body. I do exercise – I go to the gym, I swim sometimes – but if I do too much, it can set me back. When I went to Berlin last year, the amount of walking I did set me back for a good few days afterwards. Only I can know what’s right for my body.

These are all things that have been said to me as a result of my having Asperger’s Syndrome.

“Screaming kids make you go into sensory overload? Stop making it about you” – on a feminist blog entry about letting children into adult spaces, where some disabled people said in the comments that they couldn’t handle screaming children because it made them physically sick, something that happens to me (not to mention that screaming is a kind of trigger). Because only children have special needs, it’s not like adults have them or anything. When a kid screams its head off, it might be autistic and we shouldn’t judge, but autistic adults? Fuck off. What’s particularly irony is that these people claim to be anti-ablism. So, erm, why are you having a go at disabled people then? We exist too.

“You can’t have Asperger’s, you’re doing a languages degree” – said to me by a doctor when I was a student. Because people with Asperger’s only do maths or science, it’s not like creative or humanities types with Asperger’s exist (Gary Numan, Paddy Considine and Ladyhawke would like a word). This is one reason why I am not a fan of Rain Man, because people think we all act like that. Yes, a lot of Asperger’s types are good at maths and science, but it doesn’t mean we all are, plus I come from a family full of people who are good at history, languages and English.

“It may feel like a bereavement” – said to my mum when I was diagnosed with Asperger’s for the first time, aged ten. She did not take this comment very well.

And I’m one of the lucky ones. I’m not visibly disabled; I don’t have a cane, a dog, a wheelchair, a hearing aid or missing limbs. I’m not claiming benefits and being called a scrounger by local idiots who assume I must be on the take. I’ve never, kina hora, been beaten up for being disabled (I’ve been called names on the internet, but this is the internet we’re talking here). Other people, however, have, and the constant stigmatisation of the disabled in this country by our government and our gutter press just contributes to hate crimes against us. After all, we’re just faking it (especially if we have an invisible illness), we’re making it up for attention (especially if we have Asperger’s, BPD, bipolar disorder or any other illness du jour that naive self-diagnosing teens on the internet who’ve done a personality test think they have), we’re scroungers and I know someone who had a disability and still managed to go to work / work full-time / climb Everest / whatever. The fact that George Osborne parked his car in a disabled space sums up just what he and his government think of us, and it is not pleasant.

September 18, 2012

This is going to be a political post, sorry.

Filed under: fuckwittage,m.e. awareness — kankurette @ 8:26 pm

I’ve neglected this blog for too long, especially recently as. I need to start posting again, particularly as I spent the weekend at my mum’s house, reading a boxful of letters and cards and obituaries that she kept after Dad died. I plan to get in touch with two of the writers of the obituaries, as they are old friends who we haven’t heard from for years; I have already found one through Linkedin. Thank G-d for the internet. Anyway, being reminded of how respected my father was in matters energy, and the way his writing touched so many people, inspired me to write again. The other thing that inspires me to write this blogpost is anger.

I am extremely grateful that I am able to work. Compared to other people with Asperger’s, and certainly other people with ME, I am privileged as hell. I am able to hold down a job, take care of myself – showering, making sure I have clean clothes, etc. – talk to people and manage to spend four hours a day working without feeling sick (most of the time). I am able to cope with minor changes in routine and I spend my afternoons resting. One of my greatest fears is my health deteriorating, because I worry that even if I was bedridden, this government would try to force me into work. After all, my mum’s friend Lizzie has severe back problems, caused by a lifetime of working with disabled children, that forced her to give up her job. She is barely mobile and can only walk short distances. And yet, her benefits were stopped and she was declared fit to work, even though she is no way near fit. Lizzie is not a unique case by far.

I’ve subscribed to the black triangle campaign on Facebook and day after day, I read horror story after horror story of people who are barely able to move or take care of themselves losing their benefits. Some have committed suicide. I wonder how many more people will die, either naturally or through taking their own lives, as a result of this.

I have always liked Elvis Costello’s album Spike, which was played to me throughout my childhood, and one of my favourite songs on that album is ‘Tramp The Dirt Down’, an anti-Thatcher tirade that makes me cry whenever I hear or cover it. The line that makes me well up is ‘I never thought for a moment that human life could be so cheap’. Never has it rang so true. Crazy though this sounds, I sometimes wonder if disabled people are even considered human by the current government. Do they even care if we die? After all, we’re expendable. We’re a burden, a drain on society, and most of us are probably faking it anyway, especially if we have an invisible illness – at least, that’s what the papers claim, and then we wonder why hate crimes against disabled people are on the rise. There were 2095 crimes against disabled people recorded last year, compared to 1559 in 2010. That’s pretty worrying. How many will there be this year? Even if the Paralympics does raise the profile of disabled people like never before, will it be enough?

When George Osborne presented medals at the Paralympics – which were sponsored by ATOS, which is kind up there with, say, McDonalds supporting an event promoting kindness to animals – I thought, “Well, Chris Morris, you and your fellow satirists can retire now. Satire is dead.” It is both darkly hilarious and disgusting to see the very people who are taking benefits away from disabled people, Paralympic athletes included, giving medals to disabled people and sponsoring an event concerning them. For two weeks, disabled people are heroes, inspirational figures, and then it’s back to normal. I’m not having a go at the Paralympic athletes. I think they’re incredible and they deserve acclaim for their hard work, just like their able-bodied counterparts. I just find the hypocrisy of the government around the Paralympics absolutely sickening, just like Cameron praising the Olympic athletes while funding towards sporting activities is being cut.

Disabled people deserve better than this. The many should not be punished for the actions of the few idiots who do fake disability. It is not practical to have people basically coerced into working jobs that they are not physically capable of doing, especially if said jobs only make them worse. And with jobs disappearing due to cuts and becoming harder and harder to obtain, what is left for the people taken off benefits? Are they just expected to starve to death? Does Cameron think relatives will help them out or something? I’m lucky enough to have a great network of relatives who will take care of me – my mum and auntie took turns looking after me in the week after my eye operation, and made sure I was OK – but not everyone else is. Maybe I’m sounding hysterical, but I’m tired – I’ve had a bit of a flare-up this week – and I’m angry. I miss my dad like crazy but the one good thing about his death is that he’s not around to see what this country is turning into. I just hope to G-d that we never lose the NHS and become like the US; I have heard so many horror stories from American friends, and it terrifies me to think that, in the event of an operation like my last one, I’d be forking out thousands of pounds, which I do not have.

While this lot are in control, I pray that my health does not get worse. I have an invisible illness, and good days and bad days. Sometimes I can get through my shifts OK, but on other days, like today, I’m not so lucky. My Asperger’s shouldn’t hold me back too much, but my ME does, and although Asperger’s is a lot more in the mainstream than it was in 1994, so many people still think ME is fake. Invisible illnesses are more complex than they seem. They are not black and white. Just because I have good days does not mean I am faking. Hopefully, it will never come to the point where I am too ill to work. Hopefully. The consequences are too horrible to think about.

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.

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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