An anniversary of sorts

NOR Høst
Høst – Bendik Riis, 1946 – ©Riis, Bendik/BONO – Owner/photo: Nasjonalmuseet

26. October – Not the fun kind of anniversary, the serious kind. It’s been a year since my brain haemorrhage. This year has been strange to say the least. It’s been marked by emotional ups and downs, and a turn for the worse in my M.E. It’s been a short year in many ways, time seems to shwosh by these days and I’m stuck here inside not getting to be a part of it much.

It’s also a month and a half more than eight years since i first got M.E. I have the same story as a lot of us, getting a viral infection and just not getting better again. Except I did for a while and then I overdid it massively, got new infections and crashed again to a much worse version than I ever had before. I’m on the severe side now, before the brain haemorrhage I was just tipping over moderate towards severe.

I know how M.E. works now, and I did a year ago so the absolute unexpectedness of something new happening was a massive shock to the system. I didn’t actually think it was all that bad although I realised I needed help and called my mom and then an ambulance. It took many months for me to realise that the reason they drove me in with the sirens on was not because of traffic like they told me, but because they thought I was having a stroke or bleeding out and needed me to get in fast enough to start treatment.

When it turned out it wasn’t a stroke I figured they would send me home the next day. Turns out they take unexpected events in the brain department pretty seriously in 40 year old women and they kept me in hospital for over a week. I came home the day before I turned 41.

I didn’t notice massive problems at first, and some of the ones I have now are difficult to separate from M.E. problems. No matter what, I was massively lucky in position and size of the bleed. My eyesight has deteriorated quite a bit, I had to get new glasses and I’m not certain it had stabilised when I got them. I think I should take another eye test soon. I have some problems with my fine motor skills. I don’t always manage to hit what I think I am and things like typing is sometimes difficult (I touch type and learned to do it without looking down). My memory is bad, but that’s a symptom of M.E. so I’m not sure that is a consequence of the bleed. I have some anxiety issues that developed from this, but I think mostly it’s natural to get scared from something so serious so I try not to beat myself up over it.

Now this sounds like I have a lot of complaints, but I’ll tell you something. I’m not unhappy. I wish I could do everything I want to of course and I have shitty days quite often, but there are positive things happening in my little life as well. I’ve taken the scary jump to talk to some new people every day and even made a few new friends I hope. I’m thankful for those people every single day, they make me feel like fighting and laughing and making jokes again.

I’ve started up a few hobbies again. I knit and draw and colour in. I’m trying to write a bit, I have some story ideas. It’s slow going, but I hope I’m getting somewhere. I’m reading again. I do this blogging thing which is also a bit scary since traffic is picking up. My soup series seems to be a hit, and I hope to do some more cooking stuff. I used to be a chef before my knees decided to give up on me and I’m trying to come up with more food that is quick, simple and tasty but also nutritious.

Anyway, I’m doing ok although I’m not well. I’m doing my best to entertain myself from the crushing boredom of being housebound and unable to be social in real life. I sometimes get scared it’s going to get worse, or that I’m getting another bleed and that isn’t much fun but somehow I manage to shake myself out of it every time. I try to stay positive – not always succeeding but as long as I do my best I think I can be proud of that. I’m pretty emotional this week, I didn’t think it would be this hard to reach the one year mark but I’m still here and still trucking on.

Getting your groove back – or something

Sometimes life is a tinsy tiny little bit difficult. I’ve just had another conversation with the disability people, and I’m wrapped up in bureaucratic red tape and it’s taking for fucking ever! It’s easy to get discouraged and down when nothing seems to go your way, and you are on your third night of not sleeping much. For me though, this is when I end up at my silliest and weirdest. These are a few of my coping mechanisms:

Reading something sad: I’ll have a really good snivelling cry (works with sad movies too). Trust me you’ll feel better after. Being a good ol’ geek means I’ll always find some  fanfiction full of angst somewhere. Crying from fictional angst has nothing to do with my own life, is for some reason pretty helpful. YMMV obviously. In the end I’ll be redfaced and swollen, full of snot and somehow feeling better anyway.

Movies: I’ll watch my version of guilty pleasure* movies; monster movies. The stupider the better. Giant fish, mutated sharks and alligators, defrosted mammoths and genetically engineered bats. Another fun activity is watching them on silent and do a bad lip reading of the thing. *I don’t actually believe in guilty pleasures, but a lot of people call them that so…

Comic books: I’ll read a new comic book I haven’t read before. I’ve discovered a lot of new stuff since I started reading comic books again. So much new fun stuff. If you want some recommendations check out Nimona by Noelle Stevenson, the Hawkeye run by Matt Fraction and David Aja, Hellcat by Kate Leth and Brittany Williams. Lots of new writers and creators to be excited about.

Internet fun: I find silly and stupid gifs, videos and memes. Cats failing to jump and falling off stuff is always good. There are a lot of creative and silly people on the intertubes. That’s how I found Nimona by the way. It started out as a webcomic before Noelle got a book deal. Following funny people on twitter, and reading fun blogs is a good way to distract as well.

Making up stories: I have a detective story in the works that I’m writing just for fun. My mom and I came up with a premise of a mother daughter detective team who solve a murder at our local train station. It’s truly ridiculous and makes absolutely no sense. It will never be published, and probably never read by anyone else either. I love silly detective stories so much, and it is fun making up stories on my local neighbourhood.

British comedy series: The obscure ones are the best. My love for the Mighty Boosh for instance led me on a journey to find out what everyone in that series had done and to gems like Snuff Box and Garth Marenghi’s Darkplace.

My coping mechanisms might not be for you of course, people are individuals. I just think it’s good to take a time out and be silly for a while and I hope you can too. Those of us with chronic illnesses need some time to be ourselves, even if we only can manage it when we are alone or online. It’s bloody hard work being sick all the time, I think I’ll watch a monster fish in a swamp instead for a while.