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.
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.
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!
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).
I’m finally through the worst of the red tape! I just got home from meeting my disability case worker and now I’m getting the money they owe me! After six months without. There is a lot of emotions bubbling, and I’m fucking exhausted but I won!
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:
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.
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.
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.
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 .
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.
So far 2016 has been a real shitty year for me. I’m having problems with my disability application after my doctor made a minor mistake on the paperwork, and I’m currently completely broke. I keep getting letters from NAV (the Norwegian disability/work/social services agencies) that claim I can just go back to my old job and work full time. I’m in a complaints process at the moment where I pointed out that my employer might not be very happy with someone coming in and collapsing in reception and having to be sent home in a taxi every third or fourth day. I am mostly housebound now, and spend more time in bed than I have before. The process is helping my health very little. I’m half panicking most of the time, and I don’t know what to do if the complaint doesn’t go my way.
The other day I had one of those doctor experiences that leaves you despairing for parts of the medical community. The only really bad experiences I’ve had has been neurologists and rheumathologists, and this one was an example of the last one. He was so focused on rheumatoid arthritis that he didn’t check for anything else, and then he tried to lecture me on how to live with ME. That was enough for me. I was shaky and brainfogged, but I managed to tell him that he should really shut up about things he knew nothing about. I gave up at that point. I might put in a complaint to the hospital at some point, it’s no wonder rare diseases take an average of seven years to get a diagnosis. I might not have a co-morbid rare disease, but if I do it will take additional time to discover.
So all in all it’s been a shitty couple of months. I keep hoping something good will happen soon, I’m having problems staying positive right now.