Assistive Technology — don’t forget to use it!

It seems silly in retrospect, but one of the things that took me longest to integrate into my daily experience with Lyme disease was simple devices that would increase my mobility, strength, memory, and so on. Many of these things are inexpensive or even free, and all of them helped to reduce the impact of the symptoms I was suffering from.

Here are some top things that I made use of. Please comment on this post with your own ideas and maybe we can build up a nice list of things that anyone who is suffering from Lyme disease can draw from.

Continue reading “Assistive Technology — don’t forget to use it!”

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.
diagnosis, symptoms

More diagnosis … which stage was I in?

Lyme disease is multi-faceted because the lyme spirochete can attack different systems in the body. Typically, the longer someone is infected, the further it progresses, though there is no guarantee as to the order in which different types of symptoms will occur. In my case, because there was no known tick bite or acute onset of symptoms, we were not sure how long I’d been sick, though we knew it had been at least 11 months by the time the diagnosis came through. This meant that I was either in the early disseminated or late disseminated stage. A key difference in those stages is whether or not there is neural involvement or heart arrhythmia).

Also, we weren’t sure exactly which symptoms I did or did not have because many of them are quite subtle. For example, I am naturally a klutz, and a slow increase in klutziness was not immediately obvious to us. On the other hand, the week I knocked over 2 water glasses a night at dinner multiple nights in a row, we started to wonder if perhaps I was more clumsy than usual. Similarly, my memory has been bad, on and off, since my first child was keeping me up at night, multiple times per night, at 3 months of age (almost 4 years ago). Was it worse? I can’t really remember, as the joke goes.

In the end, all three of the doctors I saw, including doctors from both sides of the lyme wars, agreed that I might have neural involvement (luckily, I had no heart arrhythmia). The symptoms that seemed to concern them included: my right pupil was a little slow to dilate; I had had facial paralysis; we (my husband and I) thought I was more clumsy than usual; my hearing was worse than usual; I had occasional headaches; the reflexes in my ankles were more jittery than normal; a reflex in my elbows was unresponsive; we thought my memory was worse than usual; I had had sharp shooting pains in my arm. Some of these things (such as my right pupil) may have existed before the lyme, others (such as my clumsiness and hearing) are highly subjective, and none of the doctors sat down and explained exactly which symptoms were most important in their diagnosis. So I don’t know exactly why they came to the conclusion they did. However, they all agreed, and the suggested treatment in cases with neural involvement is IV antibiotics (this is something doctors on both sides of the lyme wars tend to agree on). Thus, the day after I saw the third doctor, I headed to the hospital to have a PIC line put in.