The Fog Rolls In

It snuck up on me. Sure, I had read about fibrofog, but I really did not understand it. Other than continuous pain, I thought I was fine. Plus the horrible fatigue. I assumed it was this combination that kept me from being clear headed. It was just something I could push myself through.

I was still working for clients at this point doing writing and web design. I was also working on my own projects. One of the big problems with fibrofog, until you learn how to deal with it, is that you have no idea in the beginning just how much damage it can do to your life.

Here is the problem. You know you are not clear headed, but you think you can still function. What happens, though, is that your brain completely misfires. You do things that seem reasonable at the time but make no sense at all. For example, I emptied the dishwasher and put the pans under the bathroom sink. That made sense at the time, and I had no memory of doing it. In my mind, I properly emptied the dishwasher.

Here is a much much worse example. I felt very fuzzy headed so I thought it would be a good time to go through my backups. I do consecutive backups, and every so often the older ones need to be weeded out. It is a simple task of pulling out the older DVDs I backed up to and tossing them. The next time I went to do backups, which I do every few days, and went to put them with the others, I was astonished. All of the backups were gone. Instead of throwing out old backups, I threw out all of the backups. They were all gone.

This turned out to be worse than you might think. At the time, I was doing a lot of programming, a lot of complex work in Flash, and other complicated tasks for my own project. On a day when I was more clear headed, a rather rare occurrence at this time, I went back over my work. Some of the code was gibberish. Much of it was just missing, programmed without ever saving it. It was as if someone had taken an axe to my work, doing massive undoable damage. A year's worth of work was just gone. Only bits and pieces remained. And there were now no backups. I was meticulous about doing backups, and now everything was gone.

The final blow came soon after. I had done a web site for a client, and they were getting national television exposure. I had updated the contact form for them, and I got a call just after the program aired that it did not work. I went and looked at the code, and it made no sense. I always test things to make sure they work, but looking at this code, the simplest of HTML, and it was clear it never could have worked. How was it even possible to make such a huge mistake?

I quit working for clients at that point.

I continue to battle with fibrofog, although I have a much better understanding of it now and have developed coping mechanisms, and its severity is much less now that I am on Savella.

Fortunately, when I was first having problems with fibrofog, I chose not to drive. I just did not feel clear headed enough. I soon learned that even walking could be dangerous. I would find myself in the middle of a crosswalk with cars honking madly at me. What happened? My brain would see a light change, and even though it was a light down the street changing to green, in my mind, the light in front of me had changed to green. After a couple of times of doing this I developed much better systems of double checking when I was foggy.

I usually know now when I am foggy, but I am constantly monitoring for anything that does not make sense. If several anomalies pop up, I know I may have a problem. Here is an example. We have a shower with a glass door. At the end of the shower, I use a squeegee to get the water off of the door. But on one occasion, try as I might, I could not get the water off of the door. I would scrape and scrape and it was still just as wet. When strange things like this happen, I step back and realize it is fibrofog and try to look at it from a different angle. That allowed me to realize that instead of cleaning the glass at the end of the shower after the water had been turned off, that I had begun cleaning the glass when I first stepped into the shower with the water still running. Problem solved.

Losing track of proper sequences like this is not unusual. One adaption I use is to write a big H on the steamy glass door with my finger after I wash my hair. I then write a big B on the glass after I wash my body. This keeps me from washing my hair, then my body, then washing my hair again because I did not remember washing it, then washing my body again, and so on. I feel my face to know whether I have shaved, and then check to see whether there is a B or H on the glass to know what to do next. This is very helpful on foggy days.

Before getting Savella, for about a year the fibrofog devastated me. I could barely think. I was barely functional. I could do almost nothing. For someone who loved to work and constantly had creative projects, this was horrific.

I discovered two activities that I was still able to do. My years as a performer had developed my speaking skills, and I had done a lot of radio shows. I began doing the Jeff Booth Show, a weekly Internet radio show where I commented on sexuality and free speech issues. I even did interviews. I could prerecord it when I was more clear headed, and I could do it even when I was not in great shape, recording it from bed when moving about was not an option. On the show I could do character voices and be funny and it gave me a sense of accomplishment.

I also began work on an art restoration project that I was better at when I was foggy than when I was not. You can read about that and more about the experience of fibrofog in the Peering Through the Fog entry.