May 12th – International ME Awareness day

It’s May 12th again and that means it’s the International M.E Awareness day again. Time sure flies when you’re having fun. In bed. Alone. Dammit. I’ve been a bit more prepared before and written things in advance, but today you get things written on the fly. Lucky you! I’m also “slightly” high on my brand new pain relief patches which are the first stronger meds I’ve taken after getting off Tramadol so I might not make that much sense today. Feeling absolutely no pain tho, so that’s good.

 

This month has sucked eggs to be honest. I’ve not reacted well to my other new meds, so sleep hasn’t happened as often as I like. Then I got an UTI, hoped it would go away and had to suffer through a long weekend (emergency rooms are not really an option for me normally but in Norway in May we have this so just – no). My mom has gone off on holiday to Italy so I hobbled through a doctors visit on my own with taxis and pharmacies. It’s really the transport bit that is most stressful. And then the damn thing didn’t go away and I had to go back in again. Thankfully now a phone three of uncles and friends of my mom just fixed things for me so it ended up very stress free.

I think this is what makes it so damn hard living with this stupid disease. Whenever you end up having to go outside your normal routines you flail around and make stupid mistakes because your brain isn’t functioning right and then you end up making it worse for yourself.

I wish I could be out with all you lovely M.E warriors standing and sitting up for us today. I’m wearing my MillionsMissing t-shirt and thinking about you. With people like you on the barricades we will succeed.

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Possibly not ME warriors

P.S. For anyone wondering, my mom is taking a very well deserved vacation and is having a blast running around southern Italy visiting volcanoes and whatnot.

 

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.

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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

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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.

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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).

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Cap is right Tony!

 

Foto: Nasjonalmuseet / Lathion, Jacques

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.

 

Severe M.E day

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:

#MEAction

Open medicine foundation

25% ME group

Phoenix Rising

Please let me know if I should add some more.

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.

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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