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!

 

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.

#Millionsmissing

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.

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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?