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.

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.

giphy2
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 😏

giphy3

 

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.

giphy9
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.

giphy7
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.

giphy8
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.

giphy6
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 :))

 

Soup 2 – 2 Soup 2 Serious

So on to the next soup in Soup Season – The Soupening. Soup season lasts until spring here in Norway, and that might be as late as May if there is a lot of snow (not happened for a long time, climate change is real people). I’ll probably not write down recipes for soup for the next six months tho.

giphy1

 

Cauliflower Soup

  • 1 average sized cauliflower
  • Olive oil
  • 1 onion
  • 2 cloves of garlic (crushed)
  • 1 large potato (or 2 small)
  • 1/2 leek (use the white part) or 1 biggish spring onion
  • 1 tin of Coconut milk (400 ml)
  • 1 liter Chicken stock (or vegetable stock if you want)
  • Salt and pepper
  • A bit of lemon juice or some white wine vinegar
  • Spring onion and chili pepper for garnish and crunch

Chop the vegetables. This soup needs a blender so don’t worry about getting things even or anything. Put some oil in your skillet (you can use butter if you like) and sweat the vegetables till they soften a bit, but do not brown. Pour over stock and coconut milk. You can use ordinary cows milk here if you are not sensitive to it, but it works pretty darn well with coconut milk.

 

Pro tip: chop up all the stuff you need before you start cooking. Do this even if you have steps to a recipe, it makes it easier and less stressful to add things when you need them.

Simmer the soup on a lowish setting until the vegetables are soft (about 20-30 minutes, you might want to set a timer so you don’t forget it). Blitz the soup in a blender or food processor or with hand held blender until smooth. Taste the soup and check if you need more salt and pepper or anything else (you might need some acidity in your soup if it is a bit tame).

As usual you should serve with the stuff you like. Croutons are great in a soup like this, you can serve with sandwiches or just some good bread for dipping. I made some gluten free oat bread today (from a ready made mix) and will have a couple of slices with “oboy I can’t believe it’s not butter” on it and also some sliced spring onions and raw chili pepper on top for a bit of crunch and heat.

I’m all for buying ready made sides so you don’t have to spend more time standing up than necessary if you are a spoonie. For everyone else, croutons for instance are really easy to make with some stale bread they just take some time. This ended up being quite a lot of soup, and I’ll freeze several portions for later and as always, soups like this are really useful for other things like casseroles as well.

Soup.png

 

My bullet journal is an imperfect mess. I love it anyway

You know, I’ve seen a few articles and blog posts about perfectly laid out bullet journals with beautiful calligraphy and artistically done pages. You know the ones. These articles make it seem like you have to do it perfectly to even have one, but in my opinion that misses the point of a bullet journal completely. The journal is supposed to be yours, not a competition on who writes and draws the prettiest. It’s also meant to be useful. It’s a practical tool for every day use. I use mine to keep track pretty much everything – meaning my earlier loose notes “systems” are gone forever, and I have everything I need in one portable place.

smaug
Yes, that is Smaug

You might ask why a chronically ill housebound person needs a bullet journal in the first place. Well – I have memory problems and I use mine to make notes of what I’ve done or seen or read. I have lists of questions to ask my doctors. I write down what prescriptions I need refilling. I write down important phone conversations. I have a summary page for each month that I write down things that happened in the world, and to me personally.

And as everyone else I have administrative stuff to get through – I have to change my phone company, call insurance, write someone a birthday card. I have medical appointments, someone is visiting me, there are builders coming and the heating company is turning of all the hot water for a day to fix something gone wrong.

oktober
My monthly layout

I have a habit tracker to see patterns so I can simplify my life better. I track the weather and have a box each day to track medical symptoms and pain. That part is a bit complicated at the moment, I’m trying to see if I can find triggers for certain things that keeps happening. I’ll simplify it again when I figure it out.

dag
Very tidy day layout

I use an unlined moleskine journal for now, but next time I’m getting a dot matrix one to make some things easier to do (like write straight) and my lines a little less wobbly. In the moleskine journals the pens I like to use also seem to bleed through the paper a bit too easily so any recommendations for better journals would be great.

 

I colour and doodle on my pages. Other people do not. Some journals, like the basic starter journal on bulletjournal.com does not but it makes me happy to add colour. YMMV. I’m not the best artist but the doodles that take me a couple of minutes makes my journal colourful and fun to me. I use “ruined” pages for notes and make them useful anyway. I write down shopping lists and ideas on half used pages.

doodlesaIt took a few months to find the best layout for my day to day pages, and now I really like them. At the end of the year I’ll have a physical reminder of what happened, and with my memory problems that makes a big difference. I can go back and check when something happened, what was agreed to in a phone conversation and when I sent in some paperwork to whoever.

I make a doodle page for each month. I’m not brilliant at drawing stuff, I have to look at what other people do and copy them. I use a pencil and trace with a pen after, and still some things turns out pretty bad. I dont mind at all, I just put some colour on it and have a laugh. I also make doodles on the day pages. Maybe I saw a cat through the window, or read about ants.

doodlesMost importantly, this is a system that works for me precisely because it’s so adaptable. It might not work for you at all, or it might need a completely different layout than mine to be functional. You might need a full page for a day if you have lots of stuff to do, you might need less. Before I tried the system for myself I figured it was overhyped but as it turned out it was exactly what I needed.

Sorry about the pictures by the way. I’m not much of an photographer either as it turns out.

 

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.

typing

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

img_20160927_075045

#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.

ctvy1j1weaay_6z
#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.

30225-24-things-that-require-a-photo-id

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!

 

Just a little update

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.

fact-check-meme

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).

captain-america-civil-war-memes-toilet-roll-placement
Cap is right Tony!

 

Reading books again

I just started the new Chuck Wendig novel Invasive, and boy do I want to rush ahead and read it all tonight. I’ve skipped a bit in my reading list because the premise is so intriguing to me. It reminds me a little bit of Frank Schätzings The Swarm which is a favourite from a few years back.

http3a2f2fmashable-com2fwp-content2fgallery2fbook-lovers2funcle-fester

Reading can be difficult for me, I really have to pace myself. I used to read a lot and read really fast. It’s been years since I’ve read much at all but looking at long term disability I have to find ways to entertain myself. Before I got sick I could finish a book like Invasive in a few hours tops, and then I’d read another book just to finish off the day so pacing my reading is just annoying as hell. But if I don’t, I end up three chapters in with no idea what’s going on. I also have problems reading physical books. I read on my iPad or online via the kindle app. It’s something about the screen being back-lit that makes it easier for me to see the words.

I’m reading SHRILL by Lindy West as well right now. The book is a collection of essays so reading a chapter at the time is great. I love Lindy West. The awful thing is that I became aware of her going through one of the occasional bouts of harassment someone as visibly feminist as her do. I wish I had found her anyway if you know what I mean. She is really funny, and has things to say about acceptance and positivity about the body you have, not the one you are supposed to want. This rings very true with me. I have never managed to look the way I’m “supposed” to no matter how much I’ve dieted or exercised. I wish lifting heavy stuff was more accepted when I was younger, I was hella strong before illness took it and could have done really well with that I think.

When I’m done with these two I have a little list of authors I want to check out this autumn. I follow Pat Rothfuss and John Scalzi on twitter cause they are fun, but I have never read their books so that is changing soon. N.K. Jemesin just won a Hugo, and I’ve only heard great things about her books so she is on the list. I bought Bad Feminist by Roxane Gay and I’m starting that as soon as I finish Shrill. I also have a book about the Black Death that I’m gonna ease my way into (I like the plague. I’ve accepted that I’m a bit weird.). Feel free to make suggestions of what I can read next. Just remember that I confuse easily.

what-gif

 

What *not* to do on a good day

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.

giphy1

Here’s what I did with my great day:

  1. Vacuumed
  2. Changed my sheets
  3. Cooked
  4. Laundry
  5. Had to go back to bed and lie very still

giphy

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.