Bruce and CFS

About Bruce and CFS (Chronic Fatigue Syndrome)

The text below is a handout I give to people I’m going to work with. In my normal life I talk about the illness rarely: time consuming, boring. But in this blog, I intend to mention it as freely as needed. Maybe it’ll help somebody out there.

I expect there to be more about it within the posts, tagged “CFS,” if you want more. You may ask questions to me directly about it also.

I don’t like to talk much about my illness (CFS), so if you don’t know about it, it’s because of that. Now, though, that I’m looking to work with other folks, the issue needs to be addressed up front. (And if I write it down here, I don’t have to explain it over and over.)

Although I look perfectly healthy at first glance, looks can be deceiving. The nearest analogy I can come up with is that my illness is comparable to being paraplegic. Its major symptom is massive, ongoing and often overwhelming exhaustion, difficulty recovering, and related sleep issues.

A few examples may help:

  • I haven’t driven more than 30 miles (and rarely more than 10) from home in half a dozen years.
  • I’ve been out to one movie in ten years.
  • I use the telephone rarely, hardly ever long conversations.
  • I usually ignore emails for months on end.
  • Since lucid periods are pretty unpredictable, I don’t work on a schedule (then, usually in the dead of night).
  • Usually I have a couple of work periods in a day, lasting from 1 to 3 hours or so.
  • I spend a lot of my life flat on my back.
  • I don’t put pressure on myself to do things on a schedule. I rarely make appointments.

(So how can he be such a good swimmer? Beats me. Nothing else works. Maybe being horizontal? And being utterly regular to 3x/week. It’s an absolute life saver and energizer for me.)

But now that a couple of my projects have reached a certain stage (a book of my photographs with exhibitions, and doing some proper studio recording), I need to move out of my comfort zone. I very much look forward to working with others again!

For those working with me, you need to know that I may just need to stop. If I become noticeably disoriented or light-headed, stop me. Do I need to eat something? If I lie down (I bring a folding recliner with me), I can often recuperate enough in a short time. I don’t need quiet.

If I’m totally immersed in the work, I can often work 2 to 3 hours, but 3 hours max.

It’s entirely my responsibility to keep from overdoing it too much. But if I do, it may take a day or two or longer for me to recover.

Over the 20 years of my illness I have become pretty competent living within my parameters.

 

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