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, but 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 … But 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

Managing Lyme’s Unpredictability

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.

my story

A full time job on a half time schedule?

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.