Elettaria

I've been thinking about seeing, and how people with disabilities are part of the social construct of looking and being looked at.

Children look at things and people with unmalicious curiosity, before they're taught by adults not to stare. I think that not staring is primarily about maintaining boundaries and privacy (eye contact is usually taboo on public transport, where you may be pressed so closely to strangers that you can feel the contents of their pockets), but staring is also about wanting to look at something unusual in order to understand it. We don't give real training in how to look at something we find unusual or threatening, and are left with the options of staring invasively or refusing to look. ( Read more... )

I was meaning to write a more personal post for International ME/CFS Awareness Week about what it's like having ME, but I find that I really don't want to, it's too depressing. So here's a list of some of the lovely things about my life, some of which probably wouldn't have happened if I hadn't developed ME.

I lost music, but I found the visual arts, namely quilting. I was always so busy doing music at school that I never realised that I'm a visual thinker, let alone explored the visual arts (though I remember adoring pottery when I was eleven). I'm thoroughly enjoying quilting and I turn out to be rather good at it. It feels like a new world opening up for me.

Having to approach things in different ways can open up fascinating new perspectives. My eyes are usually too weak to read books these days, so I subscribe to the excellent audiobook service provided by the RNIB. Hearing books read aloud, and they're almost always read aloud very well indeed, provides a completely different experience to reading them on the page, plus it combines well with quilting. I notice things I'd never noticed before when reading the books, such as that startling bit in Jane Eyre where Rochester reveals that he's been wearing a string of pearls under his clothes ever since Jane left him!

I've met some wonderful people online and learnt about subjects ranging from the proper care of long hair to the weird and wonderful stuff about gender in Richard II, not to mention getting hooked on a variety of silly TV shows recommended by my friends.

Eighteenth century flame wars! (Read the next two pages too, and give me a shout if you need context.)

And most importantly, three years ago today I wandered into a bookshop and struck up a conversation with the young man working there. Next thing you know, we were sharing apples (he doesn't like the cores so I eat them) and were each plotting to murder the other for their books. We've been living together since autumn 2007 and I can't think of a lovelier person to be with.

Today is International ME/CFS Awareness Day. You can read other blog posts about it here. In its honour, here are a few things you may not know about ME. I'm pulling figures out of articles I've read recently that seemed reputable, though I don't have the energy right now to look up where I got each of the stats from. I may write some more personal posts about this later in the week. One excellent blog post that I have just read may be found here.

( Read more... )

Just when you think that you can't be surprised again by poor disability access, something new jumps up. In this case, I've been finding it increasingly difficult to read the product labels and leaflets on my medication, so I rang my local pharmacy to ask them to supply me versions in large print. It turns out that I was in fact asking for the moon on a stick. I've spent the day ringing round various organisations, and I think the easiest way to do this is to copy in the letter that's being sent off to the Pharmacy Division of the Health Department at the Scottish Government.

( Moons! Onna stick! Get 'em while they're fresh! )

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It's a bit long, but depending on what she's going to do about it there are various details that may be useful, so I shoved them all in. I'll keep you posted as to what happens. If anyone is in a similar situation and wants to get involved too, please hop in. I'll campaign for this if I have to, it's an appalling situation and I bet there are plenty of illnesses and deaths it has caused. I just hope I don't have to take my lovely local pharmacy to court. Judging from what the chap at XPIL said, it might be necessary to have a disability discrimination court case from an individual to get the law moving on this.

In other news, my new laptop has got so ridiculously unwell that John Lewis have agreed to exchange it for me. As it's been discontinued, I now need to decide which computer to get as a replacement. Apparently they'll match the spec, and since mine is discontinued and there hasn't been a direct replacement, this means moving up to either the nearest Toshiba (apparently it has 3GB of RAM rather than the 2 shown on this page) or a Sony Vaio. The guy at John Lewis reckons to go for the Toshiba, the spec's a bit better in most ways - apart from the audio card, which is making me pause slightly as the first problem I had with this Toshiba was the sound distorting. Any advice?

Awwwwwwww!

Dog "fosters" kittens.

I wonder if the kittens will pick up any canine traits?

I feel a little odd using this icon, as the cutie scrimbling in it is the family dog Lucy, who died last week. She was a mad beastie who did a great job of picking a second husband for my mother, and my stepfather always says he fell for Lucy (where there was much mutual adoration and tummy-tickling) before he fell for my mother (where there's lovebirdiness of a slightly different type). It was a very tough decision for my parents, as she wasn't actually dying, unlike when they've put previous dogs to sleep. She was 16, deaf, blind, and the dementia had simply got too bad to let her go on suffering, the poor little thing. My mother's had Yorkshire terriers for forty years and it's so strange to think of her without a dog now.

In other news, I am having a really bad patch with the ME, so apologies to anyone I've ignored on instant messenger, it's mostly because I'm too exhausted to sit at the computer and type, and mostly can't really read anyway at the moment. At least I finally have a good doctor and social worker.

Someone just posted in the sleep_disorders forum in a state of distress. He has sleep apnoea and he's finding it very difficult to cope with both the illness and the recommended course of treatment, which is understandable since both are unpleasant. In the course of discussing this, he mentioned with outrage that his doctor was brutally honest about the fact that if he has untreated sleep apnoea beyond a certain level, he's not safe to drive and the doctor should report him. Sleep apnoea is a condition where multiple episodes of breathing stopping occur during the night, which causes daytime drowsiness amongst other problems. It's fairly easy to assess, they do a sleep study and can classify sufferers according to the number of apnoea episodes per hour. There are firm legal guidelines about at what point you are and are not allowed to drive.

I also have a medical condition which impacts upon driving ability. I don't drive and I don't have sleep apnoea, but from all I've gathered, sleep apnoea is small potatoes compared to severe ME, and probably compared to moderate or even mild ME. I've not had a good night's sleep in eleven years, and that's only the beginning. Yet there is nothing stopping ME sufferers from driving. I've mentioned this to ME sufferers I know who still drive, and to an ME organisation. I generally get these answers.

( 'I can tell when I'm not up to driving...' )

Incandescent lightbulb to be phased out in favour of energy-saving bulbs

Trust me, it's not a good idea. Energy-saving bulbs are almost always fluorescent, such as strip lighting, which is a particularly harsh form. (LEDs are low-energy and they're starting to appear in bulb form, but they're not bright enough for general use yet. A few have started to appear on eBay, very expensive and sold from Hong Kong, which claim to be bright enough, but when I tried to order one it never showed up.) They're currently used as standard in shops and so forth. They can cause a variety of medical problems ranging from intense visual disturbances to migraine, and particularly affect people with dyslexia, Meares-Irlen Syndrome, autism, Aspergers Syndrome, ME and so forth, though even generally healthy people often find they cause visual problems. I can't go shopping without wearing specialist tinted glasses, usually a hat too, and even so I end up with a headache and generally unable to read. In addition, I need to use dimmer switches for most of the lights in my flat because I get light-sensitive a lot of the time and need to have low light, not to mention the dawn simulator I use for my sleep disorders. None of the energy-saving bulbs currently available can be dimmed.

If they were to develop LED lighting, which incidentally is far lower-energy than fluorescent, this idea might work. Right now it sounds terrible.

In good news, I'm still stuck at home with the relapse, but ghost_of_a_flea has been bringing me lots of DVDs to watch and keeping me supplied with food, not to mention that catnip_junkie cooked me a lovely curry last weekend. Anyway, ghost_of_a_flea and I ended up curled up far too late last night watching the old BBC Narnia miniseries, giggling and snarking all the way through and eating pancakes. 'Twas most therapeutic.

If anyone's been wondering where I've got to, the ME has gradually been getting quite a lot worse over the last year and I'm pretty ill now. Studying went out the window, and no, I don't want to talk about it. I've done some pruning on my friends page. I don't have the energy and eyesight to keep up with everyone, and so if you're someone who posts several times a week, writes long posts without using LJ-cuts, writes really long paragraphs (visual trouble), is a drama queen, is a bigot (homophobia, for instance), or otherwise someone I don't hugely want to read, you're either off my friends list or on it but not on the filter of journals I read. Please don't be offended if you're one of these people, it doesn't necessarily mean I don't like you. If you're a friend of mine and there's something you want to let me know, you're best off actually telling me rather than assuming I'm reading your journal, even if it's one of the ones on my reading filter.

Mishearing of the week: When I was talking about various quack therapies for ME/CFIDS to my mother, she managed to hear Mickel Reverse Therapy as Knicker Reverse Therapy. The answer to all your problems!

Mis-seeing of the week: ghost_of_a_flea went into the bathroom last night, where there was a brown towel draped over a stool from when I'd attacked him with dead henna. I heard a yelp. For about a quarter of a second, it apparently looked like a severed head.

Bizarre phrase of the week: "Buggery, not cannibalism!" Uttered rather loudly at gone midnight.

I've just made what should feel like more of a decision than it is. I've decided to sell my marimba (MCPV, in the Concert range). I was a keen percussionist at school, getting thrown into the orchestra at 11 and having percussion lessons from 16-18, and so I spent the summer between school and university temping in order to buy a marimba, which I did. Five months into university I got ME/CFIDS, and it hasn't gone away, nor does it show any signs of doing so. My muscle strength is crap, I can't stand for long, I haven't played in an orchestra for nine years, and I've finally accepted that the poor beast just isn't going to get played. It's 207 cm long and 90 cm wide at the low end, and I think I'd be better off with the space, not to mention the money (they're £2400 new, same as ten years ago, and people are generally advising me to ask for half as it's in very good nick). I've started asking around music colleges and percussion teachers, with any luck I'll be able to find a buyer, and I might even try eBay, although I don't know how many people in the Edinburgh area are searching for one there (and it's far too big to throw in the post).

So now I'm getting excited planning what I can do with the space it currently occupies, apart from tidying hell out of it before I can even show the marimba to prospective sellers (papers on top of it, boxes underneath...) I've been yearning after a sewing machine for some time, but never had the space for it before. I reckon I could get a desk in there on the right and make a general sewing corner of it, and another bookcase on the left if I needed it. I may even use the desk from my bedroom, I hate using the computer in there and it just ends up clogged up with stuff (too near the wardrobe), so perhaps I could have an armchair in my room (though is there really any point when it's a one-bedroom flat and there's a sofa which is the most comfortable reading spot?). I'm also going through the flat calculating which bits of furniture could be replaced with better storage, in the no doubt vain belief that the place wouldn't be such a tip if I had more storage. This place really needs blitzing, I've accumulated a ridiculous amount of junk over the years.

I expected the idea to hurt, but I think it got past that stage years ago. I got ill so soon after getting the marimba that I never even got a chance to bond with it. I'm actually finding the idea liberating (which seems faintly blasphemous), though it could just be an attack of nestiness, wanting to change the flat round a bit. Of course, if anyone suggested that I sold my beloved piano (1924 Bluthner boudoir grand in rosewood), I'd bite their arm off!