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Saturday 16 May 2020

Wheelchair Fashion: M.E. Blue

This wasn't the post I thought would bring me back to blogging. You'll see if when I do more posts that I have some photos taken way before these all ready for me to add a blog post.
I just haven't been well enough to do it.
The contrariness of M.E. being what it is I can go out & take photos twice a month & look totally 'normal' but stringing a sentence together, even on a good day, is almost impossible. Writing the captions for my Instagram (where I post every 2-3 days) is a herculean task. Every time. I go through like two or three drafts of the posts, like handwritten in my notebook.
But for this I wanted to be slightly more unscripted, just kind of stream of consciousness-y.

So, this post is about M.E. (not about this fabulous outfit which is a dress from British Retro, tights from Snag & shoes from B.A.I.T.).

It's M.E. awareness month which....yeah. M.E. awareness month is hard.
I've done a number of posts in the past.
I've written about my M.E. story.
I've written about 'normal' days.
I've written about bad days
I've written about worse days.
I've written about how my brain has changed.
I've written about my weirdest symptoms.
I've written about the frustration of the M.E. label

Some of them are super old, a few could do with updating. They're all entries in a diary of my relationship with M.E. & valid in their own way.

It's hard to talk about the M.E. If you've been on my Instagram you will know that recently I got some new meds from my doctor which helped a lot with the pain & initially I felt like a new person. My mum will tell you I was constantly telling people how it was like I had three years of energy back. But I didn't really. I've still degenerated, I'm still exhausted & drowning in it. I just have back a lot of the energy my neurological pain was sapping from me (I still have lots of other pains & I'm hoping that maybe when all this corona stuff is over I might be able to get help with those too).
I have spent the last almost a month almost constantly bedridden. And not in the "I'm laying in bed but watching tv & doing things way", in the I'm literally existing in the space between napping & passed out (there needs to be a word for like deep napping?).
It's been really scary & I've not known how to cope.
It (fingers crossed) seems to have been a flare but it's still super scary & flares like this always make me realise how little I understand about how awful M.E. can be.
Like I know how bad it can be for me but. even as someone who is in that bottom 25% of severe M.E. patients, I have no idea how awful it is for the bottom 10% & there is no way for me to even begin to understand what it is like for the bottom 1%.

I always want to end M.E. posts on a positive, uplifting note but there isn't one. Not really. There is only the vague hope that some of the research being done will eventually help some of us. One day.

As always I recommend doing more reading on your own.
Maybe read through my other posts & if you want more science  & less feelings I recommend

Hummingbird Foundation for M.E.


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