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My story (Part 1)

My Story with ME/CFS.
Part 1.


March 2018.
It's snowing. Magic. They call it the "Beast From The East", but it's magic for me.
I embark on a 3 mile walk in a blizzard. My face gets frozen and aches, in spite of all my sensible wrappings. My eyelashes freeze, and I get a sharp pain over my right eyebrow which stabs, then leaves. Any possible damage to life and limb doesn't occur to me. This is just usual everyday life and it's fun.

I go to see Sally, the little cat I'm looking after for neighbours who are abroad endlessly. The snow is more than a foot deep and totally virgin. No cars, no people, just the blizzard and drifts and that solid foot deep wonderland to trudge through.
Sally refuses to pee, refuses to go out. She blames me for it and howls. Her belly looks like a barrel. I dig long channels for her to venture out to her poop place far away from her door, and she forgives me. It makes me wonder if cats think we are gods of the weather, as we are obviously gods of tinned tuna. I think they might imagine we are gods of snow-shovelling.

The snow lasts a week, then melts, leaving huge banks of dirty drifts beside the black wet lanes. I drive to a garage-store 5 miles away, for essentials and treats. A pack of semi soft cheese -my favourite- entices me and I buy it

That night, I am so greedy I only cut one edge of the plastic wrapping, then am in there with a knife, cutting off a huge chunk and enjoying it. Perfect. An hour later I want more, get the crackers, open the pack properly, and see three huge black rings of mould on the cheese.
Ooops. Is this the kind of mould you can cut off, and eat what's left of the cheese? No idea......stachybotris? Those food moulds have the creepiest names. In fact, moulds ALL have creepy names.
What the heck is it? Is it dangerous? Must google it.
Okay -no more cheese. Will my belly cope with that huge chunk I ate earlier? Probably. My belly usually copes with all imaginable onslaughts. It is one of my best friends and thankfully, has been for a long time. A "saving grace".

Days later -yes, belly coped. No effects. The cheese incident disappears into history.
The score is: Mouldy Cheese with a creepy name -0....Body -1.

And then I go and poke a dirty stick in my right eye while trying to light a miserable little bonfire on a freezing morning on Sally-Cat's land. Forget the bonfire. My eye feels like it has just been killed. A lukewarm saltwater eye wash and simple hours of that old thing called Time seem to set the pain to rights, but in the morning I look like an alchy who has been on a week-long binge. One red eye, or rather vaguely whitish-pink, shot through with flashes of red. But I see perfectly well, and there is no pain.

Detached Retina? Haven't I heard of that? Maybe I should go to the cottage hospital in town, and get someone there to check it?
And then I recall that I have no car. The battery keeps having hissy-fits, so the car is in the mechanic's garage, in town.
And no -the eye isn't feeling bad enough to call emergency services, and no -I'm too busy to walk the ten mile round trip.
So I keep bathing it with salt water, and it gets better. I have no vision disturbances.
The score is: Bad Stick -0.....Body -1.

Then two weeks later the snow is back again, and that's just super!
Of course, Sally-Cat hates it and hates me for having ordered it. I am back on channel-digging duty. No worries.
So I decide to do one of my Intrepid Explorer 8-mile walks in the deserted Arctic landscape, and nearly end up with snow blindness.
At least, I think it might be a warning of snow blindness. Suddenly there's a light instead of those twiggy landscape features. The light's not big; probably the size of a penny, but suddenly I can't see that tree trunk. It was there a moment ago; snow-wrapped on its north side, black against the white on its south side.
And it shimmers! I can see it now, but with a truly Winter Wonderland garland around it. The tree shimmers with rainbow colours, edged with bright silver like bevelled glass reflecting moonlight. There is only one word for this: Wow. Christmas decorations in March.

It's a pity we have to have common sense as adults. The little kid in me loves what I am seeing. But I recall that I should perhaps have worn sunglasses to walk for hours in a bitter cold almost featureless white world.

Then I remember that it once happened before; at the bedside of my dying husband when I was 45. I thought it was his spirit detaching from his body, or perhaps some metaphysical Presence.
I recalled that whatever it had been it was benign, as I got no ill-feeling from it, or at any time thereafter. It had reminded me of the special effects in that Predator movie with Arnold Schwarzenegger.

So here it was again! Maybe my eye hadn't healed quite -yet. But there was no pain, and I felt remarkably well, at that moment, on the walk home, and later.


"It's a 'silent migraine' ." A friend of mine in Oregon told me by email chat that night when I described the wondrous light effect. (bear in mind I had never heard of "silent migraine.")
"Don't be ridiculous! I don't get migraine. I've never had a migraine in my life. I never even get headaches."
She told me about migraines, 'auras', and all that jazz; said I was mighty lucky not to get headache or any symptoms, but of course, some people didn't. She'd had the same herself when she was younger.
(Her version of "silent migraine" was not quite universal I have learned since via "Google", but I didn't need to know more about it then. Who needs to discover medical information about something that happened twice in 20 years, disappears and doesn't make any bother of itself? Well, I didn't. I shelved it.)


So the snow thawed . The snowman I had built in Sally's garden to entertain her (if cats can be entertained by snowmen) -leaned forward with sheer exhaustion, and began to morph into a puddly ghost.

And meanwhile I looked forward to the Spring sunshine, which would surely follow.

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Wolfcub
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