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.
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
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.
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).
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.
Today, August 8th is Understanding and Remembrance day for severe M.E. It’s very hard to think about, and write about but I feel I have to because I can. About 25% of ME sufferers are severe or very severe, and their suffering is unimaginable I think even for those of us who are just a few degrees better off.
A few years back I was sitting down with a colleague at work who was in tears. His partner had collapsed and was in the hospital deteriorating rapidly. “Did you know it could be this bad?” “Yes.” “Is there anything we can do?” “Not that I know of. She is probably to sick now.” They had decided to have a child, and the pregnancy went well but she deteriorated rapidly after the birth and probably pushed herself far over her limits trying to be a good mother. She has not seen her son since he was a little over a year old and is in a nursing home indefinitely. “I wish she had cancer, we would know something then…” Her son started school last fall.
Years after that conversation, I’m sicker than I’ve ever been. I’m not quite severe. I can take care of myself and live on my own still I am housebound and increasingly in bed. I think about her all the time. It scares all of us that don’t fall into that category, it can happen to us if we are not careful but that’s not the important think to take away from this. The important part is the people living and dying in horrible pain and suffering. The people who get abandoned by medical practitioners, the people who get sectioned because misinformation makes the medical profession believe they are mentally ill when they are not. The research that does not get funded because of this is vast.
Please consider supporting us if you can. Here are a few of our organisations that are working hard to rectify all the years of neglect this illness has suffered:
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.
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.
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.
Today – May 25th – is a global day of protest for M.E and CFS patients. It is organised through MEAction and what’s happening can be found here: http://millionsmissing.meaction.net/. Actions are planned in several major cities and activists have been sending shoes so we can show our empty places in the world. I haven’t had the money to send mine to the organisers, but here is a picture of my lovely new Adidas originals on my doorstep pretending to go out in the world and have a life on the outside. I think they are going to last me a long time, I’m mostly indoors now, and barefoot is more comfortable laying down.
Personally I’m missing from my life as someone who was good at her job, had ambitions of developing skills in design and marketing and wanted to do something about the words running around in my head. I’ve had the opening of a horror novel set in a remote area of rural Norway running around in my head for a while. It won’t leave me alone, and I will write it but I think it might take me a few years.
I’m also missing as a friend. My friends do understand that being with them is to draining. I’ve lost friends, it’s difficult to stay in touch with a person who is never there and I’m admittedly difficult to stay in touch with. I’m missing as a family member. Last Christmas was celebrated in my pyjamas with just my mother present. It was nice, but not the way it’s supposed to be. I’m missing as a daughter, my mum has to help me with everything and it should be the other way around. She should be able to enjoy her retirement and not having to worry about her 41 year old daughter. Sometimes I’m glad my dad isn’t alive to see me like this – it would have broken his heart I think – and sometimes all I want is my daddy to come and make it better.
I’m missing from all the things I love to do. I love to be outside. I love hiking and swimming and being in the mountains. I love travelling and seeing new places. I’m missing from all the new things I had yet to discover. I missed out on doing the physical work on my renovation project myself. I’m missing from having a boyfriend, I find it hard to really get to know someone online and that is probably the only way it will happen now. I’m missing having a dog or two. I grew up with dogs, and I think daily about getting one again but without a yard to let it out in it seems impossible.
This is what this stupid disease is taking away from me and all the people who love and care about me. There are an estimated 17 million people with M.E worldwide. Do you know someone who is missing?
Today is the International ME Awareness day, and May is ME awareness month. One of my goals is to be more active in the patient community, but I often find it difficult to formulate and get across my opinions and even factual information the way I want it to sound. I lurk on forums and blogs because I find it difficult to write something I want to share fast enough (yes I know, other people wont feel that way). I’ve written before on how difficult information gathering and fact checking are now.
It’s a difficult illness to live with. I got sick with a series of infections in 2008 including swine flu and pneumonia, and unlike any other time I have been sick I just didn’t get better again. I managed to slowly get back to work almost full time again but that meant working at least two days a week from home, and not having any social life. I stopped pacing my activities so rigidly and when I got a new series of infections a year ago my ME flared something awful.
Right now I’m somewhere in between moderate and severe which means I’m mostly housebound. I manage to sit up during the day, but I’m in bed at least 14-16 hours a day and doing simple things like vacuuming makes me exhausted and in pain (I did that today, and had a blood sugar crash, wohoo).
I still feel lucky though. About 25% of ME sufferers are severe/very severe, and what they have to go through is something I wouldn’t wish on anyone. I also think a lot about young people with ME. At least I got to do all the stuff young people are supposed to do before I got sick.
There is biomedical research under way that holds hope for finding illness mechanism and even treatment options. The internet community is organising, and soon or later we will manage to shame the people that sits on the funding enough to pay up.