Psychological Aspects of ME / CFS

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.

Germany so far!

I have now been in Germany for a few days. So far I have settled in very well and feel quite comfortable here. Health wise it has been a mixed bag. My energy levels have been fine, I could possibly even be described as sprightly, but my digestion has not been so good. I have been troubled by continuous trapped wind since Saturday evening. Originally, this was causing quite a lot of pain in my chest, which always worries me. However, the pain has moved further down towards the bottom of the ribcage, which while not pleasant, causes me far less concern. I think that part of the problem with suffering from CFS is that because of the way it is diagnosed i.e. by eliminating other symptoms, I am always frightful that there is something else, something more serious, lurking in the background. Due to the range of symptoms that I have suffered, my confidence in my body is non-existent and the least little symptom soon becomes a terminal illness. For example, chestpains must be a problem with my heart, swollen gland in my throat or infection in my testicle must be cancer etc. With hindsight, after the problem has disappeared, these thoughts seem ridiculous, but it is something that has seeped its way into my character since I became ill.

My goals for this week are:

1) to settle in completely in Germany
2) attempt not to worry about this trapped wind and try to treat the problem naturally by controlling my diet and eating easy to digest foods.
3) to complete and submit a paper to Sigir2007

We will see how I get on with these.