The worst part of it?
Is it when the body reacts with enormous exhaustion from the tiniest physical or cognitive activity?
When the most ordinary of tasks – like getting dressed – makes the symptoms worse?
Is it when the result of this activity not only appears immediately, but after a day or two? When you hardly ever know if you should have paused earlier to avoid a serious relapse?
Is it the fact that this limit of activity goes at just brushing your own teeth– and to recover from this enormous task can take 24 hours or even more?
Is it the fact that when you have first crossed the limit – it can take days, weeks or months to recover? When it doesn’t help to get a rest on the couch?
Is it the fact that making a quick decision, to follow a strain of thought or concentrate over a period of time (more than a couple of minutes), has the same effect on the body as the previous mentioned tooth brushing?
Is it the fact that you can’t remember what you wanted to say a couple of minutes ago, what you just said, find the right words or remember what you were just told?
Is it the daily pain? It can be headaches, stomach pain, muscle pain, joint pain, often as bad as the pains of a bad influenza or fibromyalgia, for those of you who know how bad these pains are.
Is it the fact that you can have severe sleeping problems in several forms –when you feel as tired and exhausted when you wake up no matter for how long you’ve slept?
Is it the fact that sounds, touch, light and movement hurt? When music has to be turned down, or be avoided, when the sunshine we badly need has to be shut out?
Or is it the isolation all these things lead to that is the worst part of it?
We have a proverb in Norway saying that «several small streams make a roaring river» The river in this case is isolation. An isolation forced upon you.
Every single one of these small streams, we all wade in them from time to time – more or less. And we do get across them, even if they make our feet wet
But when you struggle and splash around in this huge river that tears and pushes you from all sides day out and day in and you cannot reach the river bank. When everybody is safely on the other bank of the river and the only thing you can hope for is the waves to push you a little bit closer to shore for a while. So you can be there too. For just a short while. If you have the strength.
The worst part of it all?
I am not in doubt. I had fibromyalgia a few years ago myself. And migraine. That gave me plenty of small streams to wade in.
Same thing when I had bad anxiety. Panic attacks. A killing sensation that was in total charge of body and mind. Then the breast cancer struck me, – not just everybody else in the world, me.
The fibromyalgia and migraine isolates me, when the pains took over and I had no other choice than to dive into a pool of painkillers.
The anxiety isolates me, when mind and body loses control, when the heart beats rapidly, sweat pours, the throat tightens and fright of death seizes me. This is when I have learned to dive into the pool of thought.
The breast cancer no longer isolates me as much as before. It is gone. I am cured. Once a year it all comes back, though. Control. Am I still ok?
I have waded in several streams and creeks and I still have to wade into some of them, they block my path. I always manage to get out and onto the other bank of the river.
I have no doubt.
I have felt – still often feel – pain in its many forms, anxiety, exhaustion, grief, and all the small and the bigger challenges of life.
I always manage to get over to the other side.
A littel bit wet.
But not isolated. Not hidden away.
What is the worst part of it all?
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