symptoms, thoughts, treatment

Up and down, up and down

It’s been a while since I made an entry in this blog, though I often think of things I’d like to write about. A big reason for this is that I’ve been trying very hard to return to my working life (somewhat unsuccessfully). As a result I cut out from my day everything that isn’t directly benefiting the kids (computers and the kids just don’t mix) or my job. You might note that no where in that sentence did I refer to the things that benefit me, and that’s probably part of why this attempt was unsuccessful, though my illness of course also contributed. But all of that is a topic for a separate post.

Today I’m here to talk about my symptoms, and my doctors, and the frustration of how badly the two are interacting. At the bottom of this post you’ll see a very nice little diagram showing my symptoms (yellow line) and the other factors that may interact with them. Anything below the 0 line is bad. For example, I started tracking my sleep around 3/11, and you can see that for the first two days, I got *less* sleep than I should have. In contrast, you can probably see that my symptoms were better than normal around 2/12 and 2/26 but worse than normal around 1/15, 2/19 and 3/11. Details on the scales and what I was tracking can be found in the caption below the image.

Now, I made this chart because I’m a scientist and I like data, but because I’m a scientist, I also know that this chart is almost meaningless. Less meaningless than my daily symptom logs (which I’ve almost stopped doing at this point, nothing new seems to come up) but still meaningless. First of all, I don’t have anyone else’s charts to compare with. Second, it’s a lot of data, but way too little to conclude anything. Maybe after a year or so I could reach conclusions, but right now it’s impossible to correlate behavior with results.

So why am I keeping a chart? A couple of reasons.

  • First off, my memory is shot, so it’s hard to report clearly what’s happening without recording the data. At least that way I can be concrete with my doctors.
  • Second, my memory is shot, so I need something like this to prove to myself and others I’m still sick — look, this, today, is not the normal me — remember, I once lived without pain. You might think that I don’t need to do this anymore, but at this point is exactly when it seems to be necessary once again. In the last week, I had two alternative docs tell me that they had nothing more to offer me, that I just had to stop worrying so much and I would start to improve. Not quite as bad as saying I’m just imagining being ill, but not exactly the help I was hoping to get. The only doctors who are still truly checked in and helping at this point are my MD/homeopath (who still seems unsure of how to help me) and my therapist (who is great, but can’t give me a cure).
  • Third, science may not be able to draw conclusions, but sometimes you have to trust your gut. I hope that with the help of this data to supplement my memory, my gut may start to reach some conclusions about what is helpful and what is not. I have to decide whether to do yoga or not, how important sleep is, and so on. Science can’t help me, my doctors can’t help me, my intellect is running out of ideas, so maybe at least I can help my gut guide me.

So I’ll keep the chart, and I’ll keep adding to the chart, and I’ll keep waiting. The increasing numbers of days with energy give me hope. The increasing numbers of days with lots of sleep provide affirmation that I’m doing what I can to help myself. And maybe one day the whole picture will either tell me what I’m doing is working, or show me what to do.
Lyme symptom chart

Chart 1: a history of my symptoms. I track

  1. cold: whether my I had a cold or the flu (since my immune system functioned so badly when I became infected, the hope is that we will see an improvement now that I’ve been treated). Scale is -1 (sick) to 0 (not sick)
  2. symptoms: (scale is -2 (lots of symptoms like pain and fatigue) to 2 (lots of energy plus no symptoms)
  3. period: since it seemed to match up with downturns. Scale is 0 (no) or 1 (yes)
  4. hrs sleep (only tracked since around 3/11). If I get 7.5 hours of sleep (exactly enough when I’m energetic) that maps to 0 on the scale. If I get less than 7.5 hrs, I subtract 1 for each hour less. If I get more than 7.5 hours, I add 1 for each hour more.
  5. Whether I did yoga (only tracked since around 3/11). 0 means I did yoga morning and evening, -.5 means I only did it once, -1 means I didn’t do it at all.
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.