May 12th – International ME Awareness day

It’s May 12th again and that means it’s the International M.E Awareness day again. Time sure flies when you’re having fun. In bed. Alone. Dammit. I’ve been a bit more prepared before and written things in advance, but today you get things written on the fly. Lucky you! I’m also “slightly” high on my brand new pain relief patches which are the first stronger meds I’ve taken after getting off Tramadol so I might not make that much sense today. Feeling absolutely no pain tho, so that’s good.

 

This month has sucked eggs to be honest. I’ve not reacted well to my other new meds, so sleep hasn’t happened as often as I like. Then I got an UTI, hoped it would go away and had to suffer through a long weekend (emergency rooms are not really an option for me normally but in Norway in May we have this so just – no). My mom has gone off on holiday to Italy so I hobbled through a doctors visit on my own with taxis and pharmacies. It’s really the transport bit that is most stressful. And then the damn thing didn’t go away and I had to go back in again. Thankfully now a phone three of uncles and friends of my mom just fixed things for me so it ended up very stress free.

I think this is what makes it so damn hard living with this stupid disease. Whenever you end up having to go outside your normal routines you flail around and make stupid mistakes because your brain isn’t functioning right and then you end up making it worse for yourself.

I wish I could be out with all you lovely M.E warriors standing and sitting up for us today. I’m wearing my MillionsMissing t-shirt and thinking about you. With people like you on the barricades we will succeed.

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Possibly not ME warriors

P.S. For anyone wondering, my mom is taking a very well deserved vacation and is having a blast running around southern Italy visiting volcanoes and whatnot.

 

Spring is happening

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.

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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

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.

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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.

 

Short update – on meds and sharks and pain

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.

http://hyperboleandahalf.blogspot.no/2010/02/boyfriend-doesnt-have-ebola-probably.html

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!

 

 

Christmas 2016

Christmas is upon us and here in Norway we start the celebration on Christmas Eve. Actually most of us start on December 23rd which is the day the last details are supposed to be put in place. I can’t manage three days in a row now so my Lille Julaften (Little Christmas Eve) was spent resting, taking a shower and making the Norwegian version of sauerkraut.


Our sauerkraut is not fermented like the german version is. It’s delicious tho and is perfect with the pork based feast we traditionally eat on Christmas Eve. To make it you need:

  • 1 cabbage
  • 1 apple
  • 1/2 tablespoon caraway seeds
  • 1/2 cup white wine vinegar/apple cider vinegar (maybe a little more if it needs it)
  • 2-3 tablespoons of sugar
  • 1/2 l Stock (I use chicken)
  • Salt and pepper to taste

I cut the cabbage into wedges and then into strips in the food processor. Cut the apple into smallish cubes (it will dissolve when cooked). Put all the ingredients in a large pot and bring to a boil, simmer for about two hours until it looks like this:

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Surkål – directly translates to sour cabbage

Heat before eating.

My mom and I have spent a couple of hours tonight with me in my new Christmas PJs. That is a new tradition that we started after I got worse again. She left me while I still had some energy left and has gone up to my uncle to spend the rest of the night there with some more of our family. She’s picking me up tomorrow to go to hers for christmas breakfast (traditionally it lasts all day here but I probably only have about two hours in me).

We’ve eaten our pork belly, pork meatballs and pork roast and had cloudberry cream for dessert. We’ve opened a few presents and toasted in non alcoholic beverages. I do miss having a little Aquavit to drink but that seems like an incredibly bad idea right now when just a little alcohol makes me very hung over and this particular drink has a lot.

I wish you all a very merry holiday and hope to come back with more in Romjula (day 1-5 of Christmas).

 

GOD JUL!

 

Rest – The Bane of My Existence

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.

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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.

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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?

 

An anniversary of sorts

NOR Høst

Høst – Bendik Riis, 1946 – ©Riis, Bendik/BONO – Owner/photo: Nasjonalmuseet

26. October – Not the fun kind of anniversary, the serious kind. It’s been a year since my brain haemorrhage. This year has been strange to say the least. It’s been marked by emotional ups and downs, and a turn for the worse in my M.E. It’s been a short year in many ways, time seems to shwosh by these days and I’m stuck here inside not getting to be a part of it much.

It’s also a month and a half more than eight years since i first got M.E. I have the same story as a lot of us, getting a viral infection and just not getting better again. Except I did for a while and then I overdid it massively, got new infections and crashed again to a much worse version than I ever had before. I’m on the severe side now, before the brain haemorrhage I was just tipping over moderate towards severe.

I know how M.E. works now, and I did a year ago so the absolute unexpectedness of something new happening was a massive shock to the system. I didn’t actually think it was all that bad although I realised I needed help and called my mom and then an ambulance. It took many months for me to realise that the reason they drove me in with the sirens on was not because of traffic like they told me, but because they thought I was having a stroke or bleeding out and needed me to get in fast enough to start treatment.

When it turned out it wasn’t a stroke I figured they would send me home the next day. Turns out they take unexpected events in the brain department pretty seriously in 40 year old women and they kept me in hospital for over a week. I came home the day before I turned 41.

I didn’t notice massive problems at first, and some of the ones I have now are difficult to separate from M.E. problems. No matter what, I was massively lucky in position and size of the bleed. My eyesight has deteriorated quite a bit, I had to get new glasses and I’m not certain it had stabilised when I got them. I think I should take another eye test soon. I have some problems with my fine motor skills. I don’t always manage to hit what I think I am and things like typing is sometimes difficult (I touch type and learned to do it without looking down). My memory is bad, but that’s a symptom of M.E. so I’m not sure that is a consequence of the bleed. I have some anxiety issues that developed from this, but I think mostly it’s natural to get scared from something so serious so I try not to beat myself up over it.

Now this sounds like I have a lot of complaints, but I’ll tell you something. I’m not unhappy. I wish I could do everything I want to of course and I have shitty days quite often, but there are positive things happening in my little life as well. I’ve taken the scary jump to talk to some new people every day and even made a few new friends I hope. I’m thankful for those people every single day, they make me feel like fighting and laughing and making jokes again.

I’ve started up a few hobbies again. I knit and draw and colour in. I’m trying to write a bit, I have some story ideas. It’s slow going, but I hope I’m getting somewhere. I’m reading again. I do this blogging thing which is also a bit scary since traffic is picking up. My soup series seems to be a hit, and I hope to do some more cooking stuff. I used to be a chef before my knees decided to give up on me and I’m trying to come up with more food that is quick, simple and tasty but also nutritious.

Anyway, I’m doing ok although I’m not well. I’m doing my best to entertain myself from the crushing boredom of being housebound and unable to be social in real life. I sometimes get scared it’s going to get worse, or that I’m getting another bleed and that isn’t much fun but somehow I manage to shake myself out of it every time. I try to stay positive – not always succeeding but as long as I do my best I think I can be proud of that. I’m pretty emotional this week, I didn’t think it would be this hard to reach the one year mark but I’m still here and still trucking on.