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Thursday, 12 May 2016

M.E. Fashion: Sleeping Beauty


Do you guys remember last year when I took part in the team princess M.E. awareness event organised by Queenie Sian? Well it's M.E. awareness month & I'm taking part again.

The idea behind team princess is that we M.E. sufferers have a lot in common with the fairy tale princess, many of us are trapped in our castles, sleeping for a thousand years or 'just' cursed. There isn't a cure for M.E. or even a treatment but you can help with our isolation.

Like last year I'm not having a individual team princess fundraising page but the charity I am recommending is the Smile for M.E. charity who specialise in sending happy mail to M.E. sufferers, I can't even explain how much of a difference happy mail can make.
You could also donate to Gemma who is raising money for a wheelchair she desperately needs.

I'm not sure why but May is a time of year when I get extra tired, which I guess makes it a perfect time to do an everyday fashion post. Or at least, my everyday fashion....which is pjs these days. Seriously M.E. lends itself to such a glamorous lifestyle lol.

I wanted to make this outfit even more realistic than my last sleeping beauty look which was cute but an idealised look at M.E. This is still not super realistic, I feel uncomfortable not wearing makeup when I am doing photos so I am wearing makeup. And I don't usually sleep on top of a pretty blanket with sunlight flooding in my windows & I never sleep on my back because I find that really uncomfortable....
Eh, realism is over rated lmao.


Last time I did a sleeping beauty look I talked about bedridden days, the days when even basic things are nearly impossible & all stimuli are overwhelming. I don't really have anything to add to that, it explained it pretty near perfectly so I thought that this time I could talk about 'normal' days.

When I say normal days I mean the days, like today, when I am out of bed but I'm hurting, the days when I'm struggling to do anything but doing nothing feels like a torture. Normal sounds wrong, even to me. I feel like I should call them bad days or awful days but they account for at least 70% of my life, however much I wish they didn't.

Normal days. For me these are the pea-soup-er fog kind of days, the grey days where everything is done whilst fighting through a molasses of fatigue (kind of mixing my metaphors there but you get my drift). These are the days when doing 5, 10 minutes of colouring can leave me breathless & with so much pain in my arm that I am struggling not to cry. Where hearing the postman can be so overwhelming I have to stop everything for a few minutes.
They can also be the days where the fatigue hides, telling me that I am doing really well until I suddenly realise I can hardly move from the exhaustion & I am somewhere I can't rest.

I would say I mess up most on my 'normal' days, the days when I'm too tired to remember to be careful or to properly access what energy I have left but I have too much energy to be comfortable in bed. (I'm a terrible patient, if I'm not too tired to move I HAVE to be doing things or I go insane! And not even a little thing, I have to be using at least two senses e.g. hearing & sight or sight & touch.)


Not every spoonie has these days; 25% of M.E. sufferers would consider those days a good day, a once in a blue moon kind of day that made it possible to survive. I try to remember that when I am feeling drowned by a never ending string of 'normal' & bedridden days but I guess you can only live in your skin.

I was honestly hoping to do a more upbeat M.E. post to counterbalance this - & I will hopefully get to write that soon - but my brain has been about as useful as old spaghetti recently & I barely managed to write this in time.

Some of my other M.E. posts:


The Trouble With Words

Severe M.E. Day

M.E. Awareness Day: What's in a name?

My Weirdest M.E. Symptoms

Wheelchair Fashion: Black Dress Selfie for Severe M.E. Day


Good places for accurate information:


The Hummingbird Foundation for M.E.: Some of the best & most accurate information out there
         Where to start: What is M.E.?

A Rainbow at Night: Kit is a dedicated advocate for M.E. (which is different from CFS or any other label that M.E. patients can be stuck with) & has some very good information on her blog
          Where to start: M.E. vs CFS vs SEID

Documenting M.E.: Brooke is dying from M.E. & documented her decline, as much as she could, for the past 2 years. Whilst she, understandably, hasn't posted in a while, her blog is a treasure trove of information
           Where to start: Advice for Nurses Working with Severe M.E. Patients

Extracts from Magical Medicine: How to make a disease disappear
 This is literally just a MASSIVE list of studies showing the physiological evidence for M.E. as a disease. When my Grandma's disbelief (she thinks I'm only ill because I'm too dependant on my wheelchair & if I was more positive I would get better) & the disbelief of so many undereducated, overly arrogant doctors gets to me & I find this list incredibly soothing. All of these scientists, all these decades & decades of research, know that my condition is as real as any other & just as (if not more) debilitating than any of them.
What can I say, research soothes me.
       Where to start: http://www.stonebird.co.uk/hooper.html

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