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.
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.
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.
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.
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.
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 😏
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.
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.
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.
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.
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 :))
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.
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.
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.
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.
Even messier layout
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.
It 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.
Most 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.
It’s October and fall and soup season! For us spoonies (heh) this is the best season for cooking in my opinion. There is a lot of soups and stews that are easy and quick to make. Soups are also easy on a digestive system that sometimes has trouble keeping up. You can make a biggish portion that you can freeze and have for later, and also use as sauce in other food like casseroles.
Some of my favourite simple soups: Cauliflower, tomato, broccoli, leek and potato.
Which leads to my first recipe in what I hope is a little series:
600 g mushrooms (whatever you like, in the pictures there are brown button mushrooms and funnel chanterelles) sliced
1 red onion – chopped
2 cloves of garlic – sliced
A handful of thyme
1 litre chicken stock (or vegetable if you prefer)
5 dl cashew milk (I’m allergic to cows milk, but you can absolutely use ordinary milk or any other substitute you like)
Salt and pepper to taste
Flat leaf parsley and spring onion to decorate and add some crunch
Slice the mushrooms,and finely chop the red onion. If this is difficult for you can absolutely use a food processor for chopping or just chop the onions a bit bigger. Pull the leafs of the thyme stalks and slice the garlic cloves. Pour some olive oil in a hot skillet and start cooking the chopped vegetables. This takes a couple of minutes, until the onions are softened. Add a pinch of salt and pepper (all of this takes about five minutes).
Add the chicken stock and milk and bring up to a boil. Reduce the heat to low and go sit down and do something nice. If you are prone to forget you have something on the stove put an alarm on your phone for about half an hour to an hour.
Taste your soup. If it needs more salt and pepper add some, if not you can eat! I served mine with some flat leaf parsley and sliced spring onion for a bit of crunch. If you like thicker soup you can blitz about half of it in a blender or something, or you can add any thickening you like (cornflour, arrowroot*).
Serve with anything else you like, bread, croutons, sandwiches. Værsågod!
*Note that freezing the soup with thickening means it probably will separate after it’s reheated.
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.
You know, I’ve grown up in one of the most liberal, safe and frankly happy countries of the world. Norway like the other Scandinavian countries always come out on top. I was born in 1974 to parents who were part of the European 68 generation. They were liberal, equality minded and relatively educated. My mom always worked, and the idea that women were not equal to men was ridiculous in middle class Norway. Or so I thought.
Getting sick is a study in differences. As a patient I started experiencing being disbelieved, not listened to and being talked down to. I get a diagnosis that is a woman’s disease and increases the disbelief. I started researching and it soon became obvious that women and minority populations had massive difficulties being taken seriously when they get ill. There are patient stories from a variety of sources that paints the medical profession in a not very flattering light. There is research supporting this narrative, women’s pain is disbelieved, medical profession vastly underestimates the pain in people of colour compared to white people, it might take an average of seven years to get a rare diagnosis of which many are women’s diseases. The contrast to when my brain started haemorrhaging is staggering. I know people with ME who develop cancer say the same thing.
I became a feminist because of this. Not that I wasn’t one before I just didn’t know it. When I grew up feminists were the hard line second wave white feminists that I had nothing in common with. They just didn’t register. The “new” feminism I’ve discovered now though – the intersectional one – has been a journey to discover. I requires a lot of unlearning and spotlight on both the conscious and unconscious biases that we all have. I hope it has made me a better person.
The empathy as well came in leaps and bounds. I just didn’t understand before, and I think that is true for many of us. Pain was something that happened in short increments, not measured in months and years. Being sick was a week or two with a runny nose and a cough and then you were better again. It’s a learning experience which has been rewarding on a personal growth level but which i would like to be without all the same. I hate my stupid non functional body. If I believed in a creator I would have demanded a refund.
ETA: When I say womens diseases I don’t mean men or other folk wont get them, just that a majority is women. From what I hear that makes it even worse for men to get adequate treatment.
Look away now if you don’t want to read about for slightly icky medical issues.
This week sucked balls if I’m honest. I have some sort of infection going on, but it’s not bacterial so antibiotics will do nothing. I have mouth ulcers and fungus in my mouth so brushing my teeth hurts a lot. Eating hurts a lot. I’m hungry dammit! I’ve got lymph nodes swelling everywhere (not really, it just feels like it right now). I have an itch in my pants and water retention and crampy legs and a headache and sinuses going berserk and you name it. Fuck this week, it can go die in a fire.
Glad to have gotten that of my chest, I’m gonna try to eat something again cause I’m hangry as hell.
Sometimes life is a tinsy tiny little bit difficult. I’ve just had another conversation with the disability people, and I’m wrapped up in bureaucratic red tape and it’s taking for fucking ever! It’s easy to get discouraged and down when nothing seems to go your way, and you are on your third night of not sleeping much. For me though, this is when I end up at my silliest and weirdest. These are a few of my coping mechanisms:
So very sad
Nimona by Noelle Stevenson
Reading something sad: I’ll have a really good snivelling cry (works with sad movies too). Trust me you’ll feel better after. Being a good ol’ geek means I’ll always find some fanfiction full of angst somewhere. Crying from fictional angst has nothing to do with my own life, is for some reason pretty helpful. YMMV obviously. In the end I’ll be redfaced and swollen, full of snot and somehow feeling better anyway.
Movies: I’ll watch my version of guilty pleasure* movies; monster movies. The stupider the better. Giant fish, mutated sharks and alligators, defrosted mammoths and genetically engineered bats. Another fun activity is watching them on silent and do a bad lip reading of the thing. *I don’t actually believe in guilty pleasures, but a lot of people call them that so…
Comic books: I’ll read a new comic book I haven’t read before. I’ve discovered a lot of new stuff since I started reading comic books again. So much new fun stuff. If you want some recommendations check out Nimona by Noelle Stevenson, the Hawkeye run by Matt Fraction and David Aja, Hellcat by Kate Leth and Brittany Williams. Lots of new writers and creators to be excited about.
Internet fun: I find silly and stupid gifs, videos and memes. Cats failing to jump and falling off stuff is always good. There are a lot of creative and silly people on the intertubes. That’s how I found Nimona by the way. It started out as a webcomic before Noelle got a book deal. Following funny people on twitter, and reading fun blogs is a good way to distract as well.
Making up stories: I have a detective story in the works that I’m writing just for fun. My mom and I came up with a premise of a mother daughter detective team who solve a murder at our local train station. It’s truly ridiculous and makes absolutely no sense. It will never be published, and probably never read by anyone else either. I love silly detective stories so much, and it is fun making up stories on my local neighbourhood.
British comedy series: The obscure ones are the best. My love for the Mighty Boosh for instance led me on a journey to find out what everyone in that series had done and to gems like Snuff Box and Garth Marenghi’s Darkplace.
My coping mechanisms might not be for you of course, people are individuals. I just think it’s good to take a time out and be silly for a while and I hope you can too. Those of us with chronic illnesses need some time to be ourselves, even if we only can manage it when we are alone or online. It’s bloody hard work being sick all the time, I think I’ll watch a monster fish in a swamp instead for a while.
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.