I’ve had some hard weeks after Christmas. That’s mostly normal, but I also have the added burden of tapering my pain meds this month. I’ve been on Tramadol for a long time, and they are no longer effective so it had to be done. I’m being careful about it but it is kinda hard and I’m hurting a lot. The last two days have been particularly bad, and last night I had one of those spikes that reached the 8-9 on the pain scale.
Btw, I use Hyperbole and a Half‘s excellent pain scale. Go read the thing , there are very good descriptions.
I’m having trouble paying attention, and things are going way too fast for me on social media and the like so if you are wondering why I’m not quite with it this is why. I’m just gonna stay in bed and drink some more cocoa and possibly watch another monster movie. I watched a very bad one called Ice Sharks earlier and that was the best choice I could make today. Sharks, very smart sharks, eating everyone on the ice. Brilliant!
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.
(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 thisbland. 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.
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?
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.
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.
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!
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.
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).
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.
Here’s what I did with my great day:
Changed my sheets
Had to go back to bed and lie very still
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.
Today, August 8th is Understanding and Remembrance day for severe M.E. It’s very hard to think about, and write about but I feel I have to because I can. About 25% of ME sufferers are severe or very severe, and their suffering is unimaginable I think even for those of us who are just a few degrees better off.
A few years back I was sitting down with a colleague at work who was in tears. His partner had collapsed and was in the hospital deteriorating rapidly. “Did you know it could be this bad?” “Yes.” “Is there anything we can do?” “Not that I know of. She is probably to sick now.” They had decided to have a child, and the pregnancy went well but she deteriorated rapidly after the birth and probably pushed herself far over her limits trying to be a good mother. She has not seen her son since he was a little over a year old and is in a nursing home indefinitely. “I wish she had cancer, we would know something then…” Her son started school last fall.
Years after that conversation, I’m sicker than I’ve ever been. I’m not quite severe. I can take care of myself and live on my own still I am housebound and increasingly in bed. I think about her all the time. It scares all of us that don’t fall into that category, it can happen to us if we are not careful but that’s not the important think to take away from this. The important part is the people living and dying in horrible pain and suffering. The people who get abandoned by medical practitioners, the people who get sectioned because misinformation makes the medical profession believe they are mentally ill when they are not. The research that does not get funded because of this is vast.
Please consider supporting us if you can. Here are a few of our organisations that are working hard to rectify all the years of neglect this illness has suffered:
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.
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.
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.
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.
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.