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!

 

 

A few thoughts on trying to lose some weight

I don’t have much faith in new year’s resolutions so this isn’t really one, but I’ve gained quite a lot of weight after starting on gabapentin and now I really have to try to do something about it. I’m not eating particularly much calorie wise for a healthy person, but being this inactive means the kilos creep on steadily. Losing weight when you are not moving much is really hard I have to say. I’m almost wishing for a period of low appetite again so I have to force myself to eat instead of the other way around.

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My diet isn’t bad, and I’ve eaten pretty healthy for a long time so portion control is going to have to be the way to do it. I’m not good at eating small meals throughout the day, and I’m going to try to work on that. I also have to say that my relationship with food isn’t always the best, which is funny when people find out I used to do the food thing for a living. It never has been really. I overeat when things aren’t great, and these days that usually means being in pain. I’m working on it tho, I’ve pretty successfully changed what I eat in those situations to much healthier and lower calorie fare and now I’m working on minimising the behaviour altogether. Tips and tricks are welcome.

Other than that, I plan on eating what I normally do just less of it. I’m not going on any sort of a special diet because in my looooong dieting experience that only leads to eventual failure and even more disordered eating.

There, I’ve said it out loud. Now I just have to do it…

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This year is taking it’s toll

Yesterday Carrie Fisher died following her heart attack on friday. It hit me harder than I thought it would and I had a lot of tears coming last night. The culmination of the loss of the wonderful people who made up a lot of my childhood and adolescence has made this year harder than others, and this week with the death of George Michael and Carrie Fisher harder still. My friend IAmElenaFerrante has written a lovely blogpost on how she felt when George Michael died here, and it’s well worth a read.

Carrie obviously meant a lot to me. She was a person that was unapologetically herself and wouldn’t let anyone change that. She was smart, very funny and  apparently great to everyone who met her. I wasn’t a massive Star Wars fan, I liked it but didn’t feel the need to involve myself in that particular fandom in my younger years. I appreciate it much more now, and love the new one a lot.

My feelings about Carrie matured as well over the last few years when her visibility increased again. Pretty much any appearance or interview she did is worth watching, but one of my absolute favourites is her QI participation:

It’s also worth it finding her writing. She had a way with words, and it’s not surprising she was a brilliant script doctor. All the stories written about her over the last day makes me wish I could have met her even more than I already did. As a lasting tribute I’ll include the cause of death she wanted: She died drowned in moonlight, strangled by her own bra.