Diary Day 103: Keep Writing, Do I Know Someone With Undiagnosed ME, Language Is Our Barrier, Canary In The Coalmine.

It’s been a while, again, since I’ve written. It seems these days that every day that goes past there’s some new news that affects me, you, our community.

Originally this week I wanted to sit down and write about how difficult I find it explaining to anyone what ME is actually like. I mean, words, they simply don’t describe it.

Why don’t we have 100 words for how it feels, like Eskimos have 100 words for snow?

I feel that problem within my family, when they ask me if I am feeling better now? What they mean is, is the way I feel on the mend, like ordinary illnesses, have I recovered? I don’t know what to say…..

I feel that when I think about changing GPs like I should do, now I’ve moved house. I’m reluctant because I don’t want to be misunderstood

I think it too when considering the news about PIP payments and how to describe this illness on paper or in person. I’m really scared of the next time the brown envelope arrives from the DWP.

Then, I argue with myself, that sensation of being overwhelmed and having no mental energy or acuity to describe how it feels, is something that is a symptom of our illness anyway.

So all I can do is keep talking, keep writing and keep telling it like it is because at the end of the day, it’s this blog that is one voice that adds to all the other voices that are talking, shouting, writing and protesting to tell it like it is.

If I go quiet and get overwhelmed by the thought of how impossible-a-task it is to describe accurately how this illness is for me, then …well then part of the chain of voices goes missing.

I thought a lot about Jennifer Brea this week too…

She’s communicating in such a big way.

Her film, Canary In The Coal Mine is being made to advocate for our community and, aside from my utter respect for her taking control of the sh*t this illness brings and making something of it, it’s the last frames in this trailer shows what I recognise – her dragging herself across her floor.

While I am finding it impossible that we don’t have 100 words for CFSME like Eskimos have 100 words for snow this film does it. That moment does it. That’s it – it’s like that.

Do I know someone who has undiagnosed ME? 

All of these internal dialogues have been happening because I think that someone I know who is ill and has been ill for some time, may have ME.

They’ve been pushed from pillar to post by a GP that says:

“we don’t know why you are so tired.”

“we’ve tested you for dementia and you don’t have dementia.”

“your leg pain increasing is a sign of age.”

“if you take these antidepressants you’ll feel better.”

“we’ll do more blood tests to find out if there’s anything else going on that could be producing your symptoms.”

“continue to see the psychotherapist and your symptoms will lift, eventually.”

I don’t know them well enough for them to know what I’m like, but I do know them well enough to recognise at a family gathering recently, they looked exactly as I look when I’m suffering brain fog and fatigue and someone is asking me a question or trying to get me to talk.

I’ve heard that this person is so fatigued that sometimes they can barely leave their chair, or keep upright.

I’ve heard that this person is unable to remember where they are sometimes and they forget words and names and places.

I’ve heard that this person has energy sometimes and then not others.

I’ve heard enough to think they have ME.

So…at this family gathering…I started to talk to the ‘connecting-friend’ and I started to tell my story. I fumbled it, of course, because I usually don’t talk about it right from the beginning but I managed to say that I thought that this person may have a version of what I’ve got and that yes, I too forget where I am and have lapses in energy and ….

at that point my connecting-friend looked horrified and dumbfounded and I really don’t think it was because she was worried about me, I think it’s because she heard something that might explain her family member’s symptoms and all the hope and denial she’s had about it improving suddenly got taken away…

I stopped then.

100 words for ME –  1000 voices joining.

We start talking and we join up, we tell it like it is, you see…..

Copyright Lindy 2016

Addendum 3/4/16 For Canary In The Coalmine film read Canary In A Coalmine.

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