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.

 

Planning a “Party”

Two of my oldest and dearest friends are coming to see me before christmas for as long as I can manage that day. I’m trying my hardest to curb the impulse to clean all the things and cook up a storm like I normally would. Yes, I tended to go all out when people came over. I haven’t seen them face to face for a long long time, and I would love to be the bestest hostess ever when I do (I do know they are coming to see me and not to judge my hostess skills. Really.).

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Weeks in advance and I’m already stressed out, mostly because I’ve missed them a lot and want to show that by giving them everything I can. I’m trying to think of something really simple to serve them that won’t take much prep and I can do the day before. My mom is coming in to clean for me. I’ll shower the day before, and then someone should really sit on me so I don’t get up to do “stuff”.

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Now you stay in there and I’m out here. Much better!

An anniversary of sorts

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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.

Making new habits – getting better at being effective at what I can do

I’ve talked bit about habits before and how I use them to preserve energy.  A few years ago I found a tumblr called Unfuck Your Habitat (UFyH) and that started changing how I approached housework. I used to be really messy, and would clean and tidy up in a panicked frenzy when someone was coming to visit. Naturally that meant I hated every second of it.

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Oh, do come in.

It’s a lot of work changing habits like these, it has taken me about a couple of years to get to the point I’m at now where I have a home that is pretty much always – if not super clean – at least tidy. It feels good to have gotten this far being as sick as I am.

So what sort of routines have I created for myself? Well the rules of UFyH are pretty simple; put it away not down, laundry has three steps – wash, dry, put it away dammit, everything has to have a place to live. Most importantly the system emphasises working within your limits. I’ve not documented the paring down of my excess stuff since most of that happened in the middle of the renovation of my living room and kitchen, but trust me I got rid of a lot of stuff I never used.

The routines I have now is as follows: Keep the kitchen and bathroom spotless by doing a little bit every time I’m in there. I wipe down counters and sinks and put stuff away pretty much on automatic now and I think that I might use about 10 minutes or so a day keeping things clean. I had to get a new dishwasher for my new kitchen and bought a narrow (45 cm)  one because a full size one wouldn’t fit in the new layout. Best decision ever! It’s more than enough space for one person, and has a very handy short program that I often use when the machine isn’t full. Not filling things up to the brim makes it easier to empty again strangely enough 😏

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About a decade ago I was an apprentice in a restaurant kitchen, and pretty much the first lesson I got was to keep your workstation clean. Don’t know why I stopped doing it ’cause it turns out it’s a lot easier to cook when I do it now. We separate out food leftovers in green bags Oslo (they turn it into bio fuel) so I keep the (smallish) bucket I use for it on the counter while I prepare food and have less steps to go to get rid of vegetable peel and eggshells etc. Packaging gets tossed in the sink first and sorted later. Most of it is plastic and gets recycled and some of that needs to be rinsed before going into its blue bag (blue and green bags gets separated out by a giant robot named Bagsy and goes to making new stuff. The leftover garbage gets burned and is used for heating homes, like mine). My bins are under the sink so its a short distance.

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This goes in there, that in here and we’ve saved the world!

I’ve also gone back to preparing all the ingredients before I start cooking (mise en place) – it saves a lot of energy since you never have to hurry to finish chopping something up or finding something you need. And as always – there is no shame in using frozen and already prepared ingredients. If you have a food processer of some kind using it as often as you can does save your energy.

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Cooking is easy, all you need is a horse a cow and a goat.

Laundry gets the same treatment. I thought I had to get a narrow top loaded machine for my tiny bathroom (a narrow frontloader will fit I found out later) and had no room for a tumble dryer. Hanging laundry can be really heavy work, but I tend to run smaller loads these days so I manage to get it done. When I can tho, I’m getting a combination washer/dryer so I can just skip the hanging up all together and go straight to putting it away dammit.

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This is where this belongs, and this is where that belongs

My mom comes in to change my sheets and mop the floors for me and do other heavy stuff, but I manage to stay on top of most of my chores even if it gets a bit dusty in here sometimes. I have though about getting a robot vacuum cleaner but my google skills has failed me a bit on finding one that will work well in a small apartment with a lot of walls and furniture in the way. If anyone has any suggestions I’ll be grateful.

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Step aside peasants, I’m coming through here

I hope this didn’t come across as too splainy, I’ve re written this post a few times and still think it could be better. If you have any questions don’t hesitate to ask ( I might take a little time to answer tho, I haven’t slept that much lately and it feels like I might be able to now :))

 

Aftermath – a hangover of the M.E variety

It’s been a few days since the brilliant #MillionsMissing protest. The aftereffects for me after something as adrenaline inducing as this is being “wired but tired”. Real rest becomes even more difficult, my brain and body works on high gear for days and days.

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It was a really good day though. I loved seeing our community coming together like that. I talked to a couple of people I’ve never spoken to before. I was seen by lots of people on twitter even from my couch. I saw the amazingly brave people who could be at the protests do amazing things. I got to tell my GP about our day of action so she is informed. I wrote something on facebook to my meatspace friends and put in a link to my blog for the first time. That was scary, I’ve separated the two on purpose for a while.

When the inevitable emotional crash came, I was watching the live stream from Oslo and the camera operator focused in on a pair of kids rubber boots. I was sobbing my head off and had to stop watching. At this point I was utterly exhausted, but I wanted to be part of more.

Responses has been trickling in for a few days. Some good, some bad, some a bit baffling. I think it’s a sign we’re winning the publicity battle, and I also think the desperation from some quarters shows we are on the right path. That the #MillionsMissing day 2  happened right after the PACE victory is a real boon to us. If you don’t know what I’m talking about please read Julie Rehmeyers piece on Stat.

I’m still running around in my red t-shirt although it needs a wash now. Very comfy and excellent to nap in – 10/10 would buy again

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#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!