I have just spent a good chunk of my money building a computer. It’s a gaming machine, so that I can play online games. It’s got a big screen, so I can use it to watch films and series. It’s a desktop machine, so I can put the screen up on a plinth and hold the keyboard without needing to sit up or carry the weight of a whole laptop.
It’s palliative care, for someone who can’t do ninety percent of the things they used to do.
When healthy, I don’t watch television. I barely even read. Computer games are something that I traditionally despise as a massive waste of time. Books are things for filling in long train journeys and relaxing on holiday. What I do when I’m healthy is create – Whether it be writing or sculpting or sewing or sketching designs for little machines or crocheting or trying to devise an origami leopard. If I’m not creating, I’m outdoors; Swimming, walking for dozens of miles a day, sneaking into abandoned buildings to photograph their innards, going to the gym or the pub and meeting new people and trying new things.
I can’t read, right now, and that’s bothering me. I tried to read the Aubreyad last year, and made it halfway through Post Captain before giving up because it was all too complicated. I’m struggling to read The Subtle Knife, which is a children’s book that I’ve read before.
I haven’t made anything at all since a waistcoat last March, and that was a simple project that should have taken half a day. About a year before that, I’d been making an item of clothing a week, and was getting markedly better at it. My sculpting has stalled, or possibly even gone backwards. I look at things I built in Japan, and can’t imagine having a quarter of that sense of movement and technical precision now.
I haven’t taken any photos since I went out photographing pigeons last spring, and I think that was the last time I left the house purely to do something fun as well. There is an official piece of paper saying that I can’t walk a hundred yards at a stretch, and it’s not even a lie. I can’t even remember why I used to enjoy talking to people, since there’s nothing to talk about anymore.
Swimming has turned into an addiction – I don’t often enjoy doing it, but I suffer if I miss it. I missed the 21.00-22.00 swim tonight, and I feel sick and guilty.
I’ve made exactly £120 at work this year. I used to make at least £300 a week before even breaking a sweat. On the social front, I no longer have the physical or mental stamina to help my friends when they need someone, and thus I feel that I have no right to be with them in the few good times.
I’ve built a little nest, with a screen full of passive entertainment, and cushions so I don’t even have to hold up my head, and a pile of cans of lemonade and a stack of packs of biscuits, so I don’t even have to go downstairs to eat. I’ve got a little cell where I can be kept in comfortable, mindless stasis.
I fucking hate this. I feel like I’ve given up, that EDS has won and I’m just trying to find ways to pass the time until I die. I literally wake up in the mornings and think “Oh, it’s half past eleven, so it’s only six hours until my partner comes home and makes me something to eat. Yeah, I can wait that long,” and then after having eaten it’s “Two episodes of this, and then I can go to sleep. Maybe have a spot of morphine so that I don’t keep waking up in the night.” and then rinse and repeat.
I don’t quite see the point. If you were told “You will be in pain for the rest of your life, and you will lose everything that you value about yourself” what would you do?