Developing empathy – the hard way

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.

 

I’d like to exchange this body with a slightly more functional one please

Look away now if you don’t want to read about for slightly icky medical issues.

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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.

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Getting your groove back – or something

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:

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.

Things that make my life a little easier

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.

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.
  • Soft clothes.

Doing better at the food thing

I’m only a week or so in to trying out simpler methods to get good healthy food even when I’m not doing so well, but I have to say that this week have been remarkably much easier to live through even though I’ve been in quite a lot of pain. I made a batch of mason jar salads last week (note to self; do prep work over longer period of time, not all at once) and they held up really well. I ate the last one yesterday and that was seven days after I made them and it was still fresh and nice.

I had groceries delivered last week as well. I’m trying to get all the heavy stuff delivered, and the online supermarket I used have a really good selection of allergy friendly food that I can’t get in my local store. They are really into good customer service as well so I’m definitely using them again. I imagine that I’ll get better at ordering what I use about once a month, and then I can get fresh stuff at my local store as I need it.

I need to get some smaller oven proof dishes preferably with lids so I can just chuck stuff in the oven to heat it up when I’m hungry. I’ve been using disposable dishes, but I don’t like throwing so much stuff away when I don’t have to. Cooking single serve portions seems to be an impossibility for me, I always overestimate how much I need. If you know how I’m calling you brilliant here and now :). Also, putting leftovers into portion sizes makes me eat and surprisingly throw away less food.

How do you make new friends?

I’m feeling kinda lonely at the moment. I’m in bad enough shape that seeing people in real life is really difficult, and quite frankly I’m no longer a priority for the friends I’ve managed to retain over the years I’ve been sick. I’m not exactly blaming them although it feels a bit hurtful sometimes that they don’t contact me more often. I mean, I really really understand the part about being out and about and doing whatever it is you do when you are well and able. I certainly would if I could. I just wish they’d include me a bit more that’s all. I’m also in an age group where most have smallish children, and that makes it hard for someone to come visit when I feel good enough to see them. They can’t bring their children with them to come see me even if I’d like to either (kids are noisy and to full of energy).

So here is my little problem. I sort of live my life online these days, but for some reason I have difficulties entering conversations online. I quite often have things I want to say but the fact that I have to write it out and be sort of articulate in a shortish period of time freaks me out a little. What if it comes across wrong etc. etc. What if I suddenly stop being able to english or even worse norwegish (that’s a word!)? This means that I often don’t manage to say what I want, and then of course I don’t make friends either. Ugh. I’m trying though. It’s my goal for this year to be more active online but that’s easier said than done.

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I would like some friends that understand what I’m going through, but who also tells stupid jokes and talks about pets and is as geeky as me. Wish me luck .

Food and chronic illness

When you have a chronic illness like mine food is something that can become incredibly difficult to navigate. I have picked up several allergies and intolerance’s to different types of food, and after doing an elimination diet a few years ago I managed to get the worst of the IBS symptoms under a semblance of control. I’m on a lose interpretation of the fodmap diet. And lately I have reintroduced some of the stuff I reacted to before that seems to work OK now. As long as I avoid wheat starch I can have gluten free bread for instance but only certain kinds. Sandwiches certainly makes things easier day to day, but I also have to bake my own bread.

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My energy levels dictate how much cooking I manage to do. Generally things have to be relatively quick and easy to cook. One pot cooking is something i recommend for everyone. Just chuck a load of vegetables in a Pyrex and put whatever meat or fish you like on top  and you’ll have a decent dinner in half an hour or so (remember some spices, herbs and a bit of oil and or lemon/lime and you are golden). I know I’m lucky that I have skills other people don’t have, I was a chef for a while and cooking is something I understand. But it’s also true that the worse I feel the worse my diet gets. It is practically impossible to have high standards when everything is difficult. So living on breakfast cereal, sandwiches, fruit and whatever I manage to scrape together for dinner becomes norm.

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Food – glorious food

I just ate a delicious salad with grilled entrecôte steak (I think it’s called porterhouse or sirloin in the US/UK) and it got me thinking. I’m in a bad period energy wise and eating healthy has fallen by the wayside. In addition some new meds have me hungry all the time (it’s gotten better after I added sink to my supplements). I’ve gained a bit of weight I really don’t need with my shitty knees and I would like not to gain any more.

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I was thinking I should try making mason jar salads. As I understand it they can be made up to a week in advance and stay fresh if you pack them right. I think I need to make snack packages for every day too. I’m making a shopping list heavy on the fruit and vegetables, and hopefully I can make a difference in my diet. I’m adding smoothies in the morning as well. I’ll freeze ready made bags with everything I need, and it should take very little time to make. Fast, easy and tasty is the way to go for now I think. I’ll make a progress report later.

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Best part of the summer is starting today

Every year I watch the Tour de France. Pro cycling is the only sport I follow these days, and le Tour is the big event of the year. It’s the only sport I share an interest for with my mom. I’ve tried many times to explain why I find it so fascinating and I’ll try again here.

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The history of the race is long and involved. It only stopped for war, and when war was over it picked tight back up again with limited infrastructure and barley any equipment. That’s not true today of course, the teams have budgets in the hundreds of millions each year and the support system for the 9 riders of each team in a grand tour is pretty large. There are bus drivers for the team busses, there are masseurs, doctors and physiotherapists. There’s a professional team of cooks often with an executive chef that has done his or her time in top restaurants (the riders eat and drink around 8000 kcal a day during the race). There are team managers, equipment managers and mechanics.

My mom and I were in London a few years back following the start of the tour. I didn’t manage to do much more than stay in the fanpark although I was having a good period, but my mom was following the riders down from the start in York and she really had a blast. I got a fabulous sunburn on my face as well this day. Don’t forget sunblock when you spend a whole day outside.

What I find so fascinating about the sport is the mixture of highly trained sportsmen (and women), the long long races, the fantastic vistas of wherever they are (France usually brings it to 11) and the gentlemen’s agreements that still exists in a professional sport that is over a 100 years old. The personalities of the racers, some you like, some you don’t. The team managers and owners making a spectacle. Sitting with your hearth in your throat when the big and the small crashes happens. Hoping no one gets seriously hurt. It’s not exactly relaxing but I love it anyway.

By the way, if you happen to watch TV the final day, the pro women’s team gets to race and finish with a sprint on the Champs Elysee a couple of hours before the men come in. They are savage!