my ramblings

Spring is happening

Frk Johansen1 Comment

I’m kinda in a not brilliant place yet. It’s partly what I’ve been going through over the last few months with the meds and partly a normal slump in function I seem to have every spring. Why I get worse in spring time I have no idea but it is like clockwork, every year. Could be my allergies, they seem to be extra potent this year.

vår

I’m having some problems stringing longer thoughts and sentences together, and I’m keeping pretty quiet on social media in fear of saying the wrong thing now that my head isn’t all there. I want to take part but I keep worrying I’ll say something that will be taken all wrong. Tone is hard online isn’t it? Especially when you write in a language that isn’t your first and your brain is a tiny little bit scrambled.

I’ve upped the frequency of my infusions a bit, so my pain is sort of under control. At first we increased my gabapentin intake which worked but the major side effect I got was insatiable hunger and well, overeating is a very old “friend” of mine and I kind of had hoped never to see that guy again so that had to stop. Fast. I gained a metric shitton of weight in two months on top of what I already have so my doc has prescribed Topamax for me so we’ll see if it helps a bit. I’ve stopped taking gabapentin and lo and behold the food intake stopped on a dime.

My pain doc is just amazing, I’m not sure I’ve dealt with anyone else taking all of my history so seriously and making sure all of me is doing the best I can. Yes, I know how lucky I am to have him on my team.

 

Sunday update from bed

Frk Johansen2 Comments

It’s slow going here for me. The med tapering has gone pretty well, but my pain levels are off the hook right now. I’m seeing my pain doc on tuesday so hopefully I’ll feel a little better after that and can get started on new meds. I’m getting an infusion and probably a block in my neck again so that will help I think.  I really didn’t remember what it was like to not be constantly on opioids and have had a really hard time staying positive the last few weeks.

I’ve been watching a lot of bad action and monster movies to distract myself and I might have seen all of Jason Statham’s back catalogue over the last week or so. He mostly plays the same guys (cop or assassin) over and over again, so I can drift a bit in between fight scenes.

200

Why do the hair and makeup people always put Jason in really bad wigs tho? I mean, there is actual footage of the man with his own hair so finding out where his hairline should go is not impossible.

 

Rest – The Bane of My Existence

Frk JohansenLeave a comment

When I was better I managed to take rest periods on the days I worked from home, and I’d take a break or two to regroup when I was at the office, and when I came home. This meant I had absolutely no social life at all and I had no energy to do anything else than basic stuff. After I my big crash last year my baseline has been difficult to find. I still do way too much on the days I feel a bit better. I’m semi mobile and manage to feed myself and keep myself and my place in ok shape but I just want to do everything. I’ve finally accepted that I need help and my mom comes in and does the heavy stuff, but still…

Resting is very hard for me. My brain starts working on high gear almost immediately after laying down, and before you know it I have analyzed Jurassic World and worked myself into a little bit of a furious state. Yes she is their aunt, but for fucks sake she is running a multi million dollar business that requires her attention and is not a convenient babysitter service for sisters who are getting divorced without telling their kids first.

giphy2
See! I can run in from dinosaurs in stiletto heels while you stand there being a completely charmless know it all Chris Pratt!

(How did this movie happen btw? You must have a pretty bad script and a really bad director to manage to get this calibre of actors to be this bland. Omar Sy is in this mess for fucks sake, and Pratt should manage to be funny if you just let him do his thing. Bryce Dallas Howard has nothing to work with here, you can see the struggle if you look.)

Sometimes I design my dream house in what is supposed to be rest, and end up in trouble when I eventually have to look up if whatever it is I want is possible. I don’t want a large house just a fantastic one.  I’m thinking I need a view like this and a house with large windows facing the right way.

66_561749851

I’m trying the guided meditations on youtube and I think I need to try to stick to a set schedule so I’m being a bit more proactive here with my rest. I’m so bored these days I’m doing the boom and bust thing and as a result spending even more time in bed and that is not good.

So this was all rambly and possibly a bit incoherent but hopefully you get the gist?

 

Just a little update

Frk Johansen1 Comment

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.

fact-check-meme

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).

captain-america-civil-war-memes-toilet-roll-placement
Cap is right Tony!

 

Reading books again

Frk Johansen1 Comment

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.

http3a2f2fmashable-com2fwp-content2fgallery2fbook-lovers2funcle-fester

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.

what-gif

 

Developing empathy – the hard way

Frk JohansenLeave a comment

You know, I’ve grown up in one of the most liberal, safe and frankly happy countries of the world. Norway like the other Scandinavian countries always come out on top. I was born in 1974 to parents who were part of the European 68 generation. They were liberal, equality minded and relatively educated. My mom always worked, and the idea that women were not equal to men was ridiculous in middle class Norway. Or so I thought.

Getting sick is a study in differences. As a patient I started experiencing being disbelieved, not listened to and being talked down to. I get a diagnosis that is a woman’s disease and increases the disbelief. I started researching and it soon became obvious that women and minority populations had massive difficulties being taken seriously when they get ill. There are patient stories from a variety of sources that paints the medical profession in a not very flattering light. There is research supporting this narrative, women’s pain is disbelieved, medical profession vastly underestimates the pain in people of colour compared to white people, it might take an average of seven years to get a rare diagnosis of which many are women’s diseases. The contrast to when my brain started haemorrhaging is staggering. I know people with ME who develop cancer say the same thing.

I became a feminist because of this. Not that I wasn’t one before I just didn’t know it. When I grew up feminists were the hard line second wave white feminists that I had nothing in common with. They just didn’t register. The “new” feminism I’ve discovered now though – the intersectional one – has been a journey to discover. I requires a lot of unlearning and spotlight on both the conscious and unconscious biases that we all have. I hope it has made me a better person.

The empathy as well came in leaps and bounds. I just didn’t understand before, and I think that is true for many of us. Pain was something that happened in short increments, not measured in months and years. Being sick was a week or two with a runny nose and a cough and then you were better again. It’s a learning experience which has been rewarding on a personal growth level but which i would like to be without all the same. I hate my stupid non functional body. If I believed in a creator I would have demanded a refund.

 

ETA: When I say womens diseases I don’t mean men or other folk wont get them, just that a majority is women. From what I hear that makes it even worse for men to get adequate treatment.

 

I’d like to exchange this body with a slightly more functional one please

Frk JohansenLeave a comment

Look away now if you don’t want to read about for slightly icky medical issues.

tumblr_mgsgl1hpbl1s3ac02o1_500

This week sucked balls if I’m honest. I have some sort of infection going on, but it’s not bacterial so antibiotics will do nothing. I have mouth ulcers and  fungus in my mouth so brushing my teeth hurts a lot. Eating hurts a lot. I’m hungry dammit! I’ve got lymph nodes swelling everywhere (not really, it just feels like it right now). I have an itch in my pants and water retention and crampy legs and a headache and sinuses going berserk and you name it. Fuck this week, it can go die in a fire.

Glad to have gotten that of my chest, I’m gonna try to eat something again cause I’m hangry as hell.

http3a2f2fmashable-com2fwp-content2fgallery2fhungry-gifs2fliz-lemon-food

Getting your groove back – or something

Frk JohansenLeave a comment

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:

Gamera
So very sad
Nimona by Noelle Stevenson

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

Frk JohansenLeave a comment

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.
Hotel pillow frpm kid.no
Tray from IKEA
Glass from concretinterior.no

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.