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.
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.
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.
Today is the International ME Awareness day, and May is ME awareness month. One of my goals is to be more active in the patient community, but I often find it difficult to formulate and get across my opinions and even factual information the way I want it to sound. I lurk on forums and blogs because I find it difficult to write something I want to share fast enough (yes I know, other people wont feel that way). I’ve written before on how difficult information gathering and fact checking are now.
It’s a difficult illness to live with. I got sick with a series of infections in 2008 including swine flu and pneumonia, and unlike any other time I have been sick I just didn’t get better again. I managed to slowly get back to work almost full time again but that meant working at least two days a week from home, and not having any social life. I stopped pacing my activities so rigidly and when I got a new series of infections a year ago my ME flared something awful.
Right now I’m somewhere in between moderate and severe which means I’m mostly housebound. I manage to sit up during the day, but I’m in bed at least 14-16 hours a day and doing simple things like vacuuming makes me exhausted and in pain (I did that today, and had a blood sugar crash, wohoo).
I still feel lucky though. About 25% of ME sufferers are severe/very severe, and what they have to go through is something I wouldn’t wish on anyone. I also think a lot about young people with ME. At least I got to do all the stuff young people are supposed to do before I got sick.
There is biomedical research under way that holds hope for finding illness mechanism and even treatment options. The internet community is organising, and soon or later we will manage to shame the people that sits on the funding enough to pay up.
I’ve been trying to write this post on what interests me and helps me through when things are a bit rough like now. But I’m having trouble keeping it together. The other night I tried to write about my history as a comic book nerd, and wandered off into a long explanation off why I love Modesty Blaise despite it being problematic (at least the early stuff, and some of the books to).
The internet is for someone like me a lifesaver. I get to stay in touch with what’s happening in my areas of interest, discover new creators and genres and sometimes have a conversation with someone as nerdy as me. I get to feel like I’m part of the world for a little bit and be a little part of my friends lives even when I can’t take part in person.
I was relatively early online, my dad got a modem in 95 I think, and I used his connection when I was at home. I got my own in 96. Some of the guys I went to school with were gamers, but I discovered fan culture and realised that I wasn’t alone in being weird and a bit obsessive. You could say I discovered my people.
Some in the medical community acts like the internet is not real life, they seem to hold the view that not speaking face to face doesn’t count. Have you ever noticed that this is the same line of thought/excuse that trolls use? That what you say or do on the internet doesn’t count because it’s not real life? Its real alright:
So far 2016 has been a real shitty year for me. I’m having problems with my disability application after my doctor made a minor mistake on the paperwork, and I’m currently completely broke. I keep getting letters from NAV (the Norwegian disability/work/social services agencies) that claim I can just go back to my old job and work full time. I’m in a complaints process at the moment where I pointed out that my employer might not be very happy with someone coming in and collapsing in reception and having to be sent home in a taxi every third or fourth day. I am mostly housebound now, and spend more time in bed than I have before. The process is helping my health very little. I’m half panicking most of the time, and I don’t know what to do if the complaint doesn’t go my way.
The other day I had one of those doctor experiences that leaves you despairing for parts of the medical community. The only really bad experiences I’ve had has been neurologists and rheumathologists, and this one was an example of the last one. He was so focused on rheumatoid arthritis that he didn’t check for anything else, and then he tried to lecture me on how to live with ME. That was enough for me. I was shaky and brainfogged, but I managed to tell him that he should really shut up about things he knew nothing about. I gave up at that point. I might put in a complaint to the hospital at some point, it’s no wonder rare diseases take an average of seven years to get a diagnosis. I might not have a co-morbid rare disease, but if I do it will take additional time to discover.
So all in all it’s been a shitty couple of months. I keep hoping something good will happen soon, I’m having problems staying positive right now.