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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Finally getting what I’m owed!

I’m finally through the worst of the red tape! I just got home from meeting my disability case worker and now I’m getting the money they owe me! After six months without. There is a lot of emotions bubbling, and I’m fucking exhausted but I won!

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What *not* to do on a good day

So yesterday morning started out as a pretty good day. Pretty low on the pain scale (about a 5), I’d slept well and getting out of bed was easy peasy. For me that is. The weather was nice, lowish humidity and the temperature juuust right. The sun was shining and it didn’t hurt my eyes. After about two weeks with only shitty days this was brilliant.

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Here’s what I did with my great day:

  1. Vacuumed
  2. Changed my sheets
  3. Cooked
  4. Laundry
  5. Had to go back to bed and lie very still

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My mom asked why I hadn’t just gone outside for a bit with my good day, and I felt like an idiot. After eight years you think I’d learn wouldn’t you? Oh well, at least my apartment is dust free and my bed is clean… Which is nice since I’m staying in it today.

 

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.

Things that make my life a little easier

Over the last year and a half I’ve had to adapt to a whole new way of living. A lot of it is spent resting and even though my couch is great, my bed is better. I’ve found a few things that make being in bed a lot a little better.

  1. Hotel pillows:  Giant soft pillows that makes sitting up and lying down in bed comfortable. I have two of them stacked up under my normal pillow and they make things much easier.
  2. A tray for coffee cups, water glasses, phones and whatnot. I have several, but the plastic trays from IKEA functions beautifully. Get one with a bit of edge in case of spilling things.
  3. A bed table/laptop table. I use mine all the time, but I’ll probably get a new one that I can tilt up for even more comfort.
  4. Mason jar drinking glass with lid. I have spilled a lot of water on myself while in bed. The drinking glasses with a lid is brilliant. They are a bit heavy, but being glass they keep me water cool much longer than a plastic glass would. It’s also easier to drink enough when drinking from a straw for some reason.

Other things that keeps my life a little better:

  • My Sodastream machine. It’s sometimes difficult to drink enough. Carbonated water is easier to swallow for some reason. I also gave my mom one a few years ago for Christmas, and it still functions beautifully even though that was the cheapest version.
  • Cleaning as I go. My kitchen is spotless. Always. I keep it that way because I’ve discovered that it takes a lot less time and effort to clean as I go than say once a day. I probably use about a minute every time I’m in there to make sure everything is in order. I have a small kitchen and it is just me here so this might not be something everyone can do.
  • Getting groceries delivered. This is a new discovery, but it’s so great. I think I can manage to get deliveries about once a month if I plan it well enough.
  • Soft clothes.

How do you make new friends?

I’m feeling kinda lonely at the moment. I’m in bad enough shape that seeing people in real life is really difficult, and quite frankly I’m no longer a priority for the friends I’ve managed to retain over the years I’ve been sick. I’m not exactly blaming them although it feels a bit hurtful sometimes that they don’t contact me more often. I mean, I really really understand the part about being out and about and doing whatever it is you do when you are well and able. I certainly would if I could. I just wish they’d include me a bit more that’s all. I’m also in an age group where most have smallish children, and that makes it hard for someone to come visit when I feel good enough to see them. They can’t bring their children with them to come see me even if I’d like to either (kids are noisy and to full of energy).

So here is my little problem. I sort of live my life online these days, but for some reason I have difficulties entering conversations online. I quite often have things I want to say but the fact that I have to write it out and be sort of articulate in a shortish period of time freaks me out a little. What if it comes across wrong etc. etc. What if I suddenly stop being able to english or even worse norwegish (that’s a word!)? This means that I often don’t manage to say what I want, and then of course I don’t make friends either. Ugh. I’m trying though. It’s my goal for this year to be more active online but that’s easier said than done.

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I would like some friends that understand what I’m going through, but who also tells stupid jokes and talks about pets and is as geeky as me. Wish me luck .

Food and chronic illness

When you have a chronic illness like mine food is something that can become incredibly difficult to navigate. I have picked up several allergies and intolerance’s to different types of food, and after doing an elimination diet a few years ago I managed to get the worst of the IBS symptoms under a semblance of control. I’m on a lose interpretation of the fodmap diet. And lately I have reintroduced some of the stuff I reacted to before that seems to work OK now. As long as I avoid wheat starch I can have gluten free bread for instance but only certain kinds. Sandwiches certainly makes things easier day to day, but I also have to bake my own bread.

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My energy levels dictate how much cooking I manage to do. Generally things have to be relatively quick and easy to cook. One pot cooking is something i recommend for everyone. Just chuck a load of vegetables in a Pyrex and put whatever meat or fish you like on top  and you’ll have a decent dinner in half an hour or so (remember some spices, herbs and a bit of oil and or lemon/lime and you are golden). I know I’m lucky that I have skills other people don’t have, I was a chef for a while and cooking is something I understand. But it’s also true that the worse I feel the worse my diet gets. It is practically impossible to have high standards when everything is difficult. So living on breakfast cereal, sandwiches, fruit and whatever I manage to scrape together for dinner becomes norm.

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