Over the past few days I've been assessed & better assessed for various things & I feel like there is no better time to write this post.
M.E. is a very misunderstood illness. To be officially diagnosed with M.E. you have to be at 50% of your pre-M.E. ability level, as a base line & yet we are labelled 'fakers', 'lazy', sufferers of 'yuppie flu'....it's treated as the equivalent of Victorian ladies going into a decline.
More than 64 symptoms of M.E. have been documented covering all of the bodies systems especially the neurological, immunological, cardiovascular & digestive systems & yet we are labelled as 'pretending'.
M.E. is well documented to happen in clusters & to be transmitted via
blood transfusions & casual contact (the belief being that it is highly infectious but also highly selective meaning that everyone can be a carrier but not everyone can be a sufferer) & yet it is 'all in our heads'.
Severe M.E. is heart breaking. In the 1980s an AIDS doctor testified that M.E. patients, 'feel effectively the same every day as an AIDS patient feels in the last two weeks before death'.
For many Severe M.E. sufferers this level of suffering can last for years, even decades with little/no treatment or support & rarely anything that is actually appropriate.
As I degenerate & get closer & closer to being part of the 25-30% of M.E. sufferers who are classed as severe I gain an ever growing respect for what they manage to achieve & how positive they manage to be about the M.E.
When I flare (ever more often these days) I get glimpses into what it's like day to day for those men & women & it is not a great picture.
In my last flare I couldn't cope with anyone in the room. I struggled with noise & light &, on some days, any sensory input at all. My temperature jumped between burning up & freezing cold but I wasn't strong enough to lift my duvet or 'together' enough to use my fan's remote control. Everything was heavy, my water bottles (with 150ml of water in), my clothes, my extra light cutlery, my arms, my teddy, even the new extra light duvet my mum got me.
I would have my blackout curtains drawn, light blocking film over my windows, no lights on & I would still have to be wearing two pairs of sunglasses. I couldn't sit up, I couldn't feed myself or even get myself a drink. I couldn't even turn myself over in bed most of the time. Audiobooks were the only thing I could cope with & I could only cope with quiet, familiar audiobooks on the better days of the flare. I floated in a pain filled exhausted haze for most of the days being truly awake for no more than a few hours at a time.
It being a flare I didn't stay that bad for more than a couple of weeks & by the end I was doing much better & able to cope with more input, if only for short periods, but for 25-30% of M.E. sufferers that is a part of their normal. I know a wonderful girl for whom that would be close to a good day & that is why Severe M.E. is so misunderstood because how can someone for whom that level of suffering is a good day be visible?
They can't. It would be too dangerous, definitely over tiring & it could push them into even worse suffering.
I am certain that there are thousand, hundreds of thousands of doctors, M.E. specialists, researchers & journalists who have never spoken to, met or even seen a severe M.E. sufferer & yet are still adding their opinions to what M.E. is.
In my (admittedly limited) experience of doctors I have rarely had one be anything other than shocked & confused by the severity of my symptoms & I don't even have severe M.E.! How a severe M.E. sufferer is supposed to get the support & basic care they need when doctors don't even seem to be able to cope with me is something that worries me. I rarely even have doctors who are willing to call a broom a broom, a.k.a. however many times I call my condition M.E. they insist on calling it CFS, & I have to feel like that is part of the problem....I'm starting to rant a little bit & since I don't want to sound like my mum I'll start with the links.
No-one who isn't a Severe M.E. sufferer can really explain the day in, day out unrelenting nature of severe M.E. or what goes into living with it so I'm going to link you to some amazing severe M.E. sufferers to give you more of an idea.
Chronically Living: A (I think) 17 year old severe M.E. sufferer who's instagram is full of positivity, honesty & some really wonderful photos (I wish my instagram pictures were half so good).
Me, Michael & M.E.: One of my favourite M.E. blogs & (more importantly) one of my favourite people. Laura is a true hero being as amazing as she is whilst as ill as she is. Her posts for M.E. awareness month in May were amazing & worth reading right now.
My favourite post:
My life (an amazing insight into severe M.E. day to day)
Documenting M.E.: This is one of the blogs that my mum reads but I can't cope with because it is far too scary for me. Brooke is dying of M.E. & she has been documenting her decline for about a year & a half. The information she gives about M.E., what she is going through & ways that M.E. sufferers can be supported are amazing & the posts she has managed to write are WELL worth reading.
My favourite post:
Advice for Nurses Working With Severe M.E. Patients
A rainbow at night: I adore Kit, she is so strong & passionate & always seems to be saying what I'm thinking or ranting the rant I wish I could put into words. Her blog is so amazing & it really sees the M.E. from the same place I'm seeing it if that makes any sense.
My favourite post: (all of them?)
The Parts of M.E. &
M.E. vs. CFS vs. SEID
Hummingbird Foundations for M.E.: The BEST resource for M.E. I have ever found, it is full of links to real studies & information with evidence to support it (unlike anything I've seen on other M.E. charities, websites or government health pages). It's very dense reading, it can make me very ill just trying to read it so unless you have spare energy I would advise getting someone else to read this, picking out the relevant parts & then reading you those.
My favourite post:
Severe M.E.
