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.

Just a little update

I haven’t been very active on my blog lately, my ME is currently kicking my cognitive metaphorical butt. I have about eight pieces of writing in the draft section but they all need pictures, fact checking and sourcing and so on, and I’m just not up for that at the moment.

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What I have been doing lately though is reading a bit. I loved Chuck Wendig’s Invasive and recommend it to anyone (if insects isn’t too creepy for you). I hope they make a move of it, it was intense. I’ve been knitting socks while lying down and supporting my arms. I’ve been talking more to people on the internet, it’s scary but feels good. I’ve been overdoing it physically every time I feel a bit better because I’m so effing bored of resting and want to do something (not smart, I know).

I started watching Stranger Things. It takes a while because my memory is shit, and I have to go back every now and then and watch all over again. It’s also creepy in a way that gives me nightmares if I watch to late at night. I love it. I have a few movies to watch like Captain America: Civil War but I haven’t felt up to it lately (Cap’s my favourite Marvel hero).

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Cap is right Tony!

 

Reading books again

I just started the new Chuck Wendig novel Invasive, and boy do I want to rush ahead and read it all tonight. I’ve skipped a bit in my reading list because the premise is so intriguing to me. It reminds me a little bit of Frank Schätzings The Swarm which is a favourite from a few years back.

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Reading can be difficult for me, I really have to pace myself. I used to read a lot and read really fast. It’s been years since I’ve read much at all but looking at long term disability I have to find ways to entertain myself. Before I got sick I could finish a book like Invasive in a few hours tops, and then I’d read another book just to finish off the day so pacing my reading is just annoying as hell. But if I don’t, I end up three chapters in with no idea what’s going on. I also have problems reading physical books. I read on my iPad or online via the kindle app. It’s something about the screen being back-lit that makes it easier for me to see the words.

I’m reading SHRILL by Lindy West as well right now. The book is a collection of essays so reading a chapter at the time is great. I love Lindy West. The awful thing is that I became aware of her going through one of the occasional bouts of harassment someone as visibly feminist as her do. I wish I had found her anyway if you know what I mean. She is really funny, and has things to say about acceptance and positivity about the body you have, not the one you are supposed to want. This rings very true with me. I have never managed to look the way I’m “supposed” to no matter how much I’ve dieted or exercised. I wish lifting heavy stuff was more accepted when I was younger, I was hella strong before illness took it and could have done really well with that I think.

When I’m done with these two I have a little list of authors I want to check out this autumn. I follow Pat Rothfuss and John Scalzi on twitter cause they are fun, but I have never read their books so that is changing soon. N.K. Jemesin just won a Hugo, and I’ve only heard great things about her books so she is on the list. I bought Bad Feminist by Roxane Gay and I’m starting that as soon as I finish Shrill. I also have a book about the Black Death that I’m gonna ease my way into (I like the plague. I’ve accepted that I’m a bit weird.). Feel free to make suggestions of what I can read next. Just remember that I confuse easily.

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Entertain me, or maybe not?

I have real problems watching TV these days, but a smaller screen like an iPad and using headphones works for some reason. Following new shows and storylines is really difficult for me, and with all the great stuff I read is out there now it makes me sad. I’ve tried to watch all the new superhero and sci-fi shows on Netflix, but the stuff I know I would like is to difficult to follow for me right now. I’ve tried a lot of first episodes that I think is great, but ask me 10 minutes later what I just saw and I won’t be able to tell you. I never seem to get to episode two.

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I’m absolutely not able to go to the movies at the moment. I was really hoping to be well enough to see Captain America: Civil War, because I’ve been looking forward to it since the Winter Soldier. I manage to watch movies on my iPad, with low lights and low volume – but I’s not quite the same is it.

I do watch some old stuff on Youtube these days. Most of the Mst3k episodes are there and they are just as funny as I remember. I love bad movies – particularly monster movies – and when I was better I wrote live watching posts with plenty of snark on a few. They are on my tumblr and I think I might bring them over here some time I have the energy.

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It’s also pro cycling season, and the Giro de Italia is on and I’m not able to follow. It’s just to much flipping between cameras and helicopters. I have to get a little bit better for the Tour de France. It’s my favourite race.

Rambling about writing

I keep wanting to write stuff. There are stories and histories I want to get out but my brain is so sluggish that I don’t know if any attempts will be any good. I have a number of ideas of writing about historical subjects, but the research keeps tripping me up. I keep getting lost and confused in the source material, hell I get lost on Wikipedia these days and then I have to give up for a while.

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I think I need to get better organised when I find something interesting. Maybe if I write it down by hand it gets easier to organise it in my head? I’ve seen some pretty fantastic note taking techniques like sketch notes (take a look at sketchnote army). I’ve been trying to use a bullet journal for everyday stuff, and that works pretty well when I remember to bring my journal with me (my memory being what it is I forget it most of the time). I wish I could draw and letter like the people in my links can, but I find that using different colour pens and pencils makes it quite nice anyway.

 

A good day

So today was my first follow up with the neurosurgeon and it’s good news. I wont need an operation, and the risk of a new haemorrhage looks pretty low at the moment. Obviously I need to monitor the bit in my brain stem that is slightly malformed, but over all he thought the risk of something happening again soon to be relatively low.

In addition to that, Oslo looks like a winter wonderland right now. Enough to put a pretty big smile in my face even if its to cold for me to be outside in for any longer than a trip to the grocery store.

 

Almost done with 2015

2015 has been a very strange year for me. I had a massive flare up of ME/Cfs in march after being fairly well for several years and has been on sick leave ever since.  This time as it has before it was triggered by a sequence of infections, but unlike before I haven’t recuperated enough to go back to work even part time. I just count myself lucky that I didn’t end up in the severe category, and in need of home care. I am mostly stuck at home, but I manage the day to day stuff on my own.

Now I’m nothing if not stubborn, so I started preparing for the renovation being home all the time anyway. Now that might not be the smartest thing ever. I was trying to get things in order, but six months later and I think most people would think that I had done nothing.

In October my brain decided to rebel, and gave me what is apparently a second brain haemorrhage. I don’t know when I had the first one, it must have been really small as I can’t recall any extra symptoms. I’m really grateful that things went so well, I have some problems with my eyes and short term memory but other than that I’m doing pretty good. New glasses has fixed the worst of the vision problems.

This led to the renovation project of course. I don’t think it was ideal to start something like that when I was recuperating, but it really needed to be done and I got to spend Christmas in my new home. It’s almost finished. There are some details left but I’m in no hurry now.

2016 will start with massive follow ups to my health issues. I’m having a new MRI scan in the first week of January, and then the neurosurgeons will decide if I need an operation. I had to come off some of my meds that increased the risk of haemorrhaging, and they have obviously masked some problems I have with my joints that needs looking at.

I do have one resolution for 2016: I want to live as well as I can do, and I want everyone else to do the same. You don’t know how long you have to do the things you love and be with the people you love, and that is the most important thing. I’m going to try some new things next year, and maybe I’ll love them as much as the old things I’m no longer able to do.