Managing Lyme’s Unpredictability

September 13, 2008 at 3:29 pm (symptoms, thoughts)
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One of the most frustrating things about this illness is the unpredictable nature of its flare-ups. Even without flare-ups, the illness is unpredictable: one month I am dizzy each time I stand up, almost to the point of blacking out, the next I have to wear sunglasses and a hat indoors if the lights are on. One day I feel like myself, the next I am functioning but fatigued. One hour I have a headache, the next it feels as if the clouds have lifted and the angels are singing and I can concentrate. Anind, I say, take the kids, I’m going to write!

So … the normal ups and downs are manageable by being flexible and agile and having great support at home and work. I apply the same skills that helped me when I had a repetitive strain injury that limited me to 30 minutes a day of typing, the same skills that helped when I had a newborn and was a (relatively) new faculty member: I stay organized, so that I know what is most important and most urgent (not the same thing) at all times. I also have a very good sense of what I can do in what condition. Then I stay on top of all the mundane stuff, and whatever I can do that is important or urgent. This takes planning and organization, especially when my work hours are limited, but it is possible to do. And the advantage is that when the opportunity to really think arrives I am able to use it effectively. If the timing is bad, I rearrange my schedule when possible.

But even the best organizational skills in the world (and mine are pretty good) mean nothing when a true flare up occurs. Not the rapid changes described above, but the sinking suddenness of pain, fatigue, and headache that is inescapable and complete. One time I went within the course of an hour from (literally) doing handsprings on a gorgeous spring day in my child’s school yard to laid out on the couch napping when I was supposed to be watching her. This week (2 weeks into my first attempt to teach again) I had a similar descent. After biking Elena to school and standing around happily for an hour I suddenly found myself unable to hold my head up long enough to iron napkins (a “chore” the adults help with) and had to lay down. By the end of the day my light sensitivity had spiked, I had a headache, hot flashes, back pain, ear pain, extreme fatigue, and a total inability to read or write. A good friend (Scott) observed my descent and offered me a ride home, where I collapsed on the couch and barely left it for 2 days (we’ll see what tomorrow brings). The cause? Possibly wearing an item of clothing with some dust on it, but mostly unknown.

Clearly I have the ability to write now, and in fact I am lucky that even at this nadir my experience of lyme is unpredictable — yesterday and today around 4 or 5 pm the cognitive symptoms lifted and I could concentrate for a little while, enough to take care of a few fires, and of course I was prepared and knew the important ones. Having a job and family I love helps — rather than sinking into the remaining symptoms I’d much rather focus on the things I care about when I can.

I am lucky that the first two weeks of the semester were relatively a good period (though tiring) so I was keeping up, Friday was a planned work at home day and now it’s the weekend. I’ll have to hope that these flare-ups continue to be relatively rare and confine themselves mostly to “convenient” times (i.e. days I am not teaching). Even so, with the CHI deadline coming up on Friday, losing days of work is hardly convenient and will require even more careful use of my time in the coming days.

I remember that when I first began to comprehend what I was facing, around the time I started this blog, I read some other blogs (linked off of this one in fact), and found an essay on this same topic. The author talked about embracing her flare-ups by pampering herself with time, simple enjoyable activities (like a good movie if she was up for it) and compassion. While most of the essay (above) has to do with how to maintain my job in the face of lyme’s unpredictability, her advice is worth following. When work is neither possible nor enjoyable, acceptance, compassion, and a good pampering are a crucial ingredient to something equally important — maintaining my sanity.

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Dreaming of change…

July 24, 2008 at 6:10 pm (thoughts)
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It’s been an interesting week. It started with a dream … my doctor called to tell me I needed a major surgery. My overriding emotion was joy — the doctor was going to open up my chest and clean it out, and then I would be cured. I couldn’t find Anind, wasn’t prepared, spent the day running around getting stuff together and almost missed my chance … but I got to the hospital just in time to… wake up. I tried immediately to go back to sleep, I wanted to finish the dream!

I thought at first this dream was probably just me wishing to be better. But then a friend pointed out that we are all the characters in our dream … so in a sense I was dreaming about curing myself as much as about being cured. And of course curing has many meanings.

One is perhaps the fact that I am on antibiotics, and they seem to be helping (it’s amazing to notice words suddenly appear in my vocabulary that I’d forgotten existed; and four four days I once again had the chance to feel like myself despite the incessant and ongoing need for tons of sleep, swollen lymph nodes, and the return far too quickly of the headaches).

Another might be the objective evidence I recently received that my cognitive functions are returning to normal — in fact, on a neuro-psych test, the only thing that was consistently depressed was my verbal functioning, and even that was functional.

A third might be the sense of control I get from deciding it’s time to move toward a more sustainable place work-wise. I finally have started speaking with colleagues, advisers, my department, about the right way to structure my job for healing during the next year or two. It’s an emotional moment, returning to a place I thought I’d left behind me in grad school, when I also had a major impairment around which I structured work and life. I hope that I am equally successful in moving past that impairment while continuing my commitment to doing the work I love and spending time with my family.

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Up and down, up and down

March 24, 2008 at 3:20 pm (symptoms, thoughts, treatment)
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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.

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A full time job on a half time schedule?

December 18, 2007 at 11:50 pm (my story)
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How did all of this impact my ability to work this semester? I’ve already described how I took a week of for rest and research in October. But the impact on my semester was much more pervasive than a single week off from work. Starting in mid September, I realized that I simply was not able to keep up with my responsibilities at work. I am a tenure-track faculty member, meaning I have a job that takes most people 80 hours a week, but I probably spend 60 on when I’m not sick thanks to great time management skills. Unfortunately this leaves little room for improvement under adverse circumstances as I am already doing the maximum amount of work in the minimum time possible. Luckily the job does have built in breaks (thanksgiving, end of semester) and opportunities to cut back (not teaching). Unfortunately, they generally can’t be scheduled as needed, but simply come as the year rolls by.

Not meeting my responsibilities was very trying for me, I really hate to not meet my own standards of performance. One reason was that I was losing 10-15 hours per week to my need for extra sleep. Another problem was that I needed to spend time researching possible causes for my symptoms/my condition (once diagnosed). Additionally, I spent hours and hours in doctors’ offices, labs, and with nurses — getting tests and blood work, meeting different doctors, getting an EEG, MRI, hearing test, and more, getting my PIC line installed, meeting my home health nurse weekly, and other things I probably can’t remember. Not only that, but I was at times in such pain and so tired that I simply could not focus in meetings, and other people present could visibly see that they simply needed to take over and run things without much input from me.

I turned to several people for advice, including both of my advisers from graduate school, mentors and friends within my department and my department chair. I was so affected by my (at that time unknown) disorder and my inability to live up to my standards of performance that more than one of those people asked if I was depressed (and if that was possibly the cause of my illness — more on the negative side of that in another post, perhaps. Just remember not to let yourself be convinced it’s all in your head!). They were also incredibly supportive, encouraged me to back out of those things that I needed to and to cut back or get help, even if it put them themselves on the spot. I took the following actions (some later in the semester, some earlier).

  • Canceled a talk I had planned to give at my alma mater
  • Delegated some of the job of teaching one of my classes to a close friend and mentor
  • Arranged for extra grading help in my bigger course — thanks to the kindness of two faculty and their TAs I was saved hours of effort. A special note here: I was lucky enough to be in such a supportive department that even without a diagnosis I could safely approach senior department members and explain that I was sick and needed their students’ help. This kind of support made a huge difference in my ability to face what was happening to me and get through the semester.
  • Leaned more heavily on the regular TAs and co-instructor in my bigger course and tried not to feel too guilty about all the extra hours they were putting in for me
  • Canceled all non-essential meetings that I ran (e.g. the group meeting I normally hold weekly with all my students)
  • Stopped attending meetings that I am supposed to be at such as faculty meetings
  • Became extremely efficient with my time management
  • Cut out all hobbies (music, especially, was a sad loss)
  • Cut down on time with my kids (e.g. I stayed late at work about once a week and missed family dinner, a huge concession in our family)
  • Said no to pretty much everything that came across my plate, even if it might help my career
  • Explained my situation to my students and asked them to be understanding when I started canceling meetings left and right for doctors appointments, took a week off, etc
  • Said yes when folks volunteered to take over things for me that I hadn’t asked for
  • Requested relief from all committee work
  • Backed out of teaching in the Spring and otherwise cut down on my Spring commitments in preparation for the possibility that I wouldn’t be better yet
  • Asked my husband to travel less in the Spring for the same reason

There are probably more things that I did that I can’t remember, but the list above is a pretty good starting description. Again, all of this was possible because of the support of my colleagues. I am so grateful to be in a place where people are so understanding and supportive. Even so, I worry about what comes next and really hope that I won’t have to confront that in 6 months.

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