#MillionsMissing – part 2

It’s the second #MillionsMissing day of Action – Take Two It’s Bigger and Better. I wish I could be present physically in front of the parliament building in Oslo today, but I’m not up to that and I have some other things happening today that I can’t move. Hopefully I can participate in the flesh next time, I should have a wheelchair by then.

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#MillionsMissing

Instead I’m wearing my red t-shirt at home, and at my GP’s office. There is a massive amount of things happening today – for me that is. They are changing my front door today (literally), so builders are running around everywhere making noise. I’m gonna do a little protest in front of them here at home.

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If you are wondering what you can do to help please consider donating to Millions Missing Crowdrise campaign or The Open Medicine foundation. I would also like for you to sign the stopGet petitions if you can (One for brits, and one international). It’s to stop potentially harmful research treatment on children in the UK and is really important to me. It’s one thing to do this research on adults but since we already know it doesn’t work on us it’s diabolical to do the same thing to kids.

I expect I’ll be exhausted by the end of the day and anticipate a crash. I’m really proud of the M.E community and what has been achieved over the last few years. It feels like we have finally managed to gel into a coherent mass with common goals and I can’t thank  the organisers of the different campaigns and organisations enough. I wish I could be more useful.

P.S. I can’t wait to have a new front door. The one I have seems to magnify any sound coming from the stairwell and is leaking air like you would not believe. A new fireproof door and new insulation around it should fix the worst of the sound problems. Not hearing the kids on the third floor running up and down the stairs screaming (not really, they are good kids but kids are heckin loud) would be great!

 

Getting a wheelchair I think

I’ve talked to my mom about getting a wheelchair again. She has seemed very reluctant to admit I need one, but it turned out it was a bit more complicated than that. She was kind of excited to get me a lightweight manual chair that we can use to go shopping or museums and stuff. So am I to be honest. Lasting more than ten minutes in a shopping centre and not crashing after would be great.

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Probably not me?

Thing is, she didn’t want me to have a big outdoor electric chair. I don’t particularly want a big chair, but living in Norway we have winters and a smaller electric chair might not work very well on snow. Apparently she’s afraid I’ll get into an accident. To be fair they are fast and my reaction time is not brilliant any more. I refuse to drive a car these days, I’m terrified I’ll hit someone or something.

I’ll talk to my doctor next visit and start the process. I might get an evaluation team to come asses what I need the most. I think a lightweight collapsable chair is what I need, and I’ve seen some with helper motors on their wheels which might be good for me.

 

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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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.

 

Foto: Nasjonalmuseet / Lathion, Jacques

Developing empathy – the hard way

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.