The last two days have been trying. Yesterday, a flare up started while I was at work and quickly got so bad that I could not keep my eyes open. Luckily I was already sitting on the comfortable couch of a good friend at the time. I was able to enter that state of waking sleep that my body demands at times like that without qualms. As things slowly improved, I asked for some soup and we propped me up and ate lunch together. When I had to leave for an off campus doctor’s appointment (something I couldn’t cancel) he found a nice piece of wood and drilled a hole in it and presto! I had a walking stick. Another friend gave me a ride to the doctor’s building, and the walking stick helped me get around where the car couldn’t.
The meaning of strength
May 12, 2009 at 10:16 am (symptoms, thoughts)
Tags: flare-up, headache, thoughts
Flares
April 10, 2009 at 8:57 pm (symptoms)
Tags: flare-up, nausea
My “bad periods” are becoming a regular companion in my experience of Lyme disease. I don’t mean the overarching up and down of my fatigue, headaches, and other symptoms, but the specific moments when I suddenly realize that something is wrong and my body’s demands overwhelm anything else.
At this point they’ve become so common that I’ve named them flares… the experience of each is unique and as a group they are becoming increasingly well defined… so I thought it might be worth documenting what I’m experiencing. Read the rest of this entry »
When it rains it pours
February 22, 2009 at 8:40 pm (my story, thoughts)
Tags: antibiotics, flare-up, flu, thoughts
It’s been a while since I posted anything on this blog … when things are good I’m just less motivated –there’s so many other things I want to do, and when things are bad, I suddenly don’t have the time. That’s certainly been the pattern in the last month…
Almost immediately after my last update, I started a major downslide (the beginning of it is described in that post). The whole experience was highly hormonal, with wild emotion changes, extreme fatigue, heat, cold, and so on (and, interestingly, coincided with my period). I ended up leaving early to see my doctor just to get away from it all, and spent a lovely weekend with my 1 month old niece in Philly before going to NY. I arrived at the doctor’s office right around the end of it and was given a new antibiotic (Ceftin).
Update and mold remediation
January 29, 2009 at 7:29 pm (my story, treatment)
Tags: antibiotics, fatigue, flare-up, mold
This is a radical topic change for a moment, but I want to give a quick update to folks about how the past few months have been. The more distance I have from last September/October the more aware I am of just how sick I was in that period. I didn’t write much about how bad I was feeling, but a few details can be found in the posts from that period (e.g., “still not over…” and “Highs and Lows“) and perhaps their topics are most illustrative — I made my first visit to a support group; wrote about how the people around me could best help, and reveled in a few pain-free moments. Rather than dwell on the details, I’ll just say that that period of my life makes me even more grateful for what I have now. It took only about 2 days from the switch from Minocyclin to Zithromax for my improvement to start, and while I think I have plateaued, I am definitely doing well.
Last week was one of my best since February 2008, with about 5 or 6 good days and 3 days in a row feeling like my healthy self (boy can that get addictive!) except for the early bedtime. Looking back over my very sparse notes from last Spring I’d say I’m doing about as well as I was right after the IV antibiotics ended. On the other hand, I also still have bad weeks, and this one definitely qualifies. Hot flashes (sometimes every few minutes); nausea; naps (twice a day sometimes); that heaviness in the limbs … time to hole up and rest.
Interestingly, my improvement also coincided approximately with the installation of a device to dry out my house a little more than our basement humidifiers could. Read the rest of this entry »
still not over…
September 26, 2008 at 6:16 pm (my story, symptoms)
Tags: fatigue, flare-up
This definitely counts as one of the longest “flare-ups” I’ve had (or maybe it’s just more than one back to back). For the last week, I’ve had continued difficulty concentrating, ringing in my ears that makes it hard to go back to sleep in the middle of the night, headaches galore, and dizziness (again!). To top it all off, I had a severe bout of fatigue again today that lasted for 6 hours.
It started in a meeting where I could hardly keep my eyes open. I dragged myself to my office and collapsed on a futon I have handy that pulls out into a bed. My hands grew cold, and chills and shaking ensued. 30 minutes later I tried to go to the bathroom. I made it, but with more chills and shaking. It seemed clear this was a major episode that wouldn’t resolve quickly, and I’d also had repeating episodes of dizziness at the end of the day that made it hard to get home safely, so I decided I’d better ask for help getting home from work. I managed to get my phone and IM a friend, but even the effort of lifting my fingers to type was almost too much. Two friends got me to a car (I had to lean on one to even get there) and drove me home. I asked my in-laws to take the kids (my husband is out of town, and I couldn’t have done much for them myself).
My fatigue lasted 6 long hours in which I basically couldn’t lift a finger without getting out of breath, couldn’t project my voice without getting out of breath, didn’t have the energy to hold my head up, couldn’t sleep, couldn’t think, just couldn’t. Even breathing felt difficult at times. My whole body was tingling for much of it.
When the end came, it was as sudden and unexpected as the beginning. One of my friends called to see if I needed anything. I needed company, and fluids, and asking for soup got me both :). By the time she’d finished ministering to me, I could sit up, type, talk and hold my head up. Each one a small miracle.
Several friends have advised me recently to take this one day at a time. Worrying only makes it worse. It’s not easy to do so, but in that vein, I’ll end this by saying: I guess we’ll see what tomorrow brings. For now I’m going to enjoy my breath, my hands, my voice, my freedom.
What a week
September 22, 2008 at 6:19 pm (thoughts)
Tags: activism, flare-up
Well, it seems my “flare up” is finally over. That makes me very happy, as the pounding headaches, fatigue, and difficulty thinking/concetrating were one of the worst flare ups I’ve experienced. I’m sure that it was made worse in large part because instead of following my own advice I was trying desperately to do exactly what my body did not want — concentrate, write, and produce good work for the CHI deadline. Luckily even the worst days usually included an hour or two when I could do so without pain, but I was dumb enough to try for more on some days (or at least push the edge by doing relevant busy work instead of leaving work aside).
That said, I’m proud to say that my students and collaborators and I submitted 4 papers (three longs and a short) to CHI this year. Not bad considering I effectively had one hand tied behind my back :).
Those of you familiar with CHI might be wondering, under the circumstances, why it was that I made a post to my blog on Friday before the CHI deadline had past. My best explanation is that as I approached the CHI deadline, it became increasingly clear to me just how important it is to me to find a cure. And the current horrid state of affairs is that not only is there no cure, but folks are arguing over whether what I have even exists. This affects the treatment available to patients, the funding available to researchers, and the public health measures being taken to prevent the spread of the disease or educate people about it.
So there I was trying to work on my CHI papers, and instead I found myself calling the offices of senators and congressmen. I guess it’s not surprise how important this is to me — how about you? if you’re taking the time to read this, maybe you can take the time to make a phone call too.
Managing Lyme’s Unpredictability
September 13, 2008 at 3:29 pm (symptoms, thoughts)
Tags: fatigue, flare-up, headache, time-management, work
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.
