Tuesday, May 12, 2015


This is ME/CFS/SEID/Whatever-new-name-they-want-to-call-it Awareness Day.
All this and more could be yours!

Something I didn't know is that this particular date was chosen as it is Florence Nightingale's birthday and there is a theory that the illness blighting her life after the Crimea was very possibly, maybe, could well have been the very same one I have.  So, tenuous link with a famous person established.

It does show how desperate those of us who suffer this are, that we look to history for examples of this most definitely not being of our imagination.  Despite what fancy pants name they think of that is what most people believe - we've made it up.

In the four years since I've had this (and that includes the two years it took to whittle it down to actually being this) I've heard the following at least once:

- But you look well

- Oh I get really tired too

- You should just get on with things and not dwell on it

- Oh is *that* what is wrong, uhuh

- Isn't that the thing they can't *prove* you have (knowing glance)

- You're just feeling a little blue, you should ask the doctor for some pills and snap out of it

- You'd feel better if you just (enter exercise/diet regime of the month here)

I could make an ME bingo card to play every time someone finds out, because of the above I rarely tell people why I'm not out working my socks off as once I did.  There is almost a determination in people to deliberately downplay any illness that doesn't have a "proper" test and cure.  I can't think of many, if any, who would gladly swap everything they do and everything they enjoy to spend every day feeling as though they've just run a marathon.

For those who scoff how happy they'd be if they could stay in bed for a day I wonder if they really mean it, do they honestly want to write off days at a time just because they dared use up what little energy they have left?

There are so many sides to this disease.  So many ways it can ebb away at life until you end up like a husk just hoping that maybe tomorrow is the day you wake up and feel as though you've slept.  Oh yes, that is a choice many would want if it meant they didn't have to work full-time - and note that is dripping with sarcasm there.

I try to look on the positive, I don't wallow in what I can't do, instead I enjoy what I can.

What did I want to achieve with this post?  It's just another of my ramblings really.  Maybe I'll mention it again, maybe you'll see me dancing down the street when a cure is found or if I'm one of the lucky ones who really does wake up one morning to find it gone, maybe I'll do as in real life and pretend it isn't happening.  In the meantime it is very real, very annoying and very there, I don't expect sympathy, empathy or acknowledgement but I do expect people to remember that it can happen to anyone at any point and for that to be respected.

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