my story

Brain Fog

My brain is back in that space where it almost hurts to think. When I work, normally, it’s as if I’ve projected everything I’m keeping in play out into space around me. I move around in that space, project the future, translate from code to action or visuals, and otherwise manipulate information in my head as I go. But on days like today, it can be hard to peel my brain off the back of my head and get it moving. Even after a satisfying and lengthy nap, I pull at it and I can almost feel it resisting me, stretching out in the direction I want and then snapping back away from it all. I can see where I want it to go,┬ábut somehow I’m stuck back behind me. Continue reading “Brain Fog”

my story

Personal limits

Not a lot phases me and I generally don’t care how people judge me, my clothing, my cane, and many other things …┬áBut a few things, I’ve discovered I am very sensitive about. Some I have been lucky enough to avoid (such as using a wheelchair — I decided not to get one, but exploring that issue led me to my invaluable flipstick cane). Others are harder to escape, such as cognitive impairments (and perhaps, though it’s hard to know given how fresh it is, the idea of having a relapse).

Last Sunday, I gave a talk on my lyme work in a (friendly) audience of about 140 people who care about health and wellness informatics. The talk went well, and the questions too, up until a long-winded, two part question. I planned my answer as the speaker spoke. He finished, I responded: “In our experience… [here I realized I had forgotten his question and my answer… so I stalled for time] … we found that… [now I know it’s not coming back easily] … give me a second please.” I pause, flustered and unsure what to do. Continue reading “Personal limits”

symptoms, thoughts

Avoiding regression in chronic illness

Although I can’t say yet whether I have a chronic illness (I certainly hope not), I do know that I’ve been affected by lyme for over a year now, and in that period I’ve had at least 2 relapses (both before treatment). Now I’m attempting to give my body the space to get completely better. Since I am still at least partly symptomatic, I have to at least temporarily work on the assumption that if I push to hard I might get worse (or have a relapse). So how do I determine what is too hard?

Luckily (or unluckily) I have previous experience with chronic conditions that can relapse. Most pertinent was my experience with a repetitive strain injury. At my lowest point I couldn’t tie my own shoes or lift a glass of water (this was less than 6 months in). A month later I was able to type 30 minutes per day. 4 years later I was able to type 2 hours per day. Was this a smooth progression? No — when I tried to do too much, I would get much worse, and my rule of thumb was that it took exponentially longer to recover than to regress. Problem was, there was no line in the sand, no hard and fast rule about how many hours of typing would cause a regression and how many would not. Any give hour of typing could not be blamed for a regression, yet in sum the cause was obvious. So I had to simply tell myself no, even when I was not performing up to my standards, had a deadline I couldn’t meet, or simply missed coding. I had to guess whether the line was moving (as I healed) and how far it had traveled. Sometimes I just pushed the line, both to see how I was doing and because I was tired of being good. Most of the time I did not, and it was easy to tell when I was no where near the line, so I developed a routine that kept me there.

Now, with lyme, today, I know I am no where near the line. I feel, inside, as if I am improving, and some of the more peripheral symptoms are gone. On the other hand, I still have many symptoms including fatigue, headaches, fluid behind my knees and difficulty finding words. And while even regressing was fairly “safe” in the case of RSI, I absolutely do not want to take a chance and push myself backwards with lyme. So I am happily in the comfort zone, and plan to stay there for some time before I even consider doing anything that might push me close to the line. Somehow I will need to determine if it exists without crossing it, but I will figure that out later. For now, there’s a comfort in knowing I’ve managed this sort of situation before, and can recognize when I’m safe.