For me last Friday's events typify the main difficulty with living with ME / CFS - panic.
Christine and I were invited to attend a Ceilidh in Nuernberg. I wasn't feeling particularly great on Friday evening, still troubled by the digestion problems that had plagued me all week, but as I am Scottish and I knew many of the people who attend and I also love Ceilidhs, I felt obligied to attend.
The Ceilidh started wonderfully. We went along a few hours before because Christine had to help with the hall decoration etc. and this was good because it gave my stomach time to settle. By the time people start arriving I felt much better and for the first hour or so I was really in my element. I was talking to people, meeting friends from the past. It was wonderful!
Then came the turning point. I think I had just exerted myself a little too much, I hadn't danced (just 1 very slow gay gordon's), but the number of people, the heat in the hall, and general social interaction must have just taken its toll. I started to feel a little off. Then the panic set in. What if my legs go? How will I get home? What if this is another setback? . . . etc.
For me panic is the worst aspect of this illness. It has completely changed my personality. Before I became ill I was confident, outgoing and relaxed in most situations. Now, when I don't feel 100%, I turn into a nervous wreck and don't want to be anywhere but home where the sanctuary of bed is not far away! When I get home, I loosen up, relax and start to feel better almost immediately. The symptoms might not go away, but my outlook definately changes. I know that if I do take a bad turn, I am in a safe place.
Therefore, although I don't think CFS is a purely psychological condition, I do believe that there are psychological aspects to it and this is something that I am trying to deal with.
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I agree! To some extent this mirrors my experiences. I am often really reluctant to go out to evening social gatherings, just in case I get too ill and can't make it home.
I have some justification for this, in that I have had occasions where I have gotten quite ill and suffered terribly both at the time and subsequently as a result.
But for the most part this fear is unfounded, especially now that I am better at judging my physical state and knowing when to leave to avoid getting to this point.
I also think there's a big feedback loop here too, because CFS affects my ability to cope with stress, so if I'm worrying about getting to the point where I can't get home, then the stress of those thoughts means I'm actually far more likely to get to that point.
Anyway, it's all terribly unfair that on top of everything else, this condition robs you of the ability to be carefree
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