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.

 

Making new habits – getting better at being effective at what I can do

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.

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Oh, do come in.

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 😏

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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.

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This goes in there, that in here and we’ve saved the world!

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.

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Cooking is easy, all you need is a horse a cow and a goat.

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.

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This is where this belongs, and this is where that belongs

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.

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Step aside peasants, I’m coming through here

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 :))

 

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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#MillionsMissing – part 2

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.

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#MillionsMissing

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.

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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!

 

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.

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.