I’m now entering my sixth week of what has turned out to be the mother of all flares, one of the worst I can remember since I was first diagnosed with ankylosing spondylitis nearly nine years ago, and probably the worst I’ve had while on naproxen (other meds were less effective, and resulted in more pain).
I first reported it here. It was relatively mild, as such things go, for the first two weeks; then it showed me a whole new gear. For the first time, my neck and sacroiliac joint feel as though they’re fusing, not just stiff; and yesterday I started feeling numbness in my jaw and lower lip. It has occurred to me that my disease may be entering a new and much more unpleasant phase.
I’m managing, I’m sleeping, I’m still functioning — but for now, I’m hiding. As somebody said at last year’s AS forum, the reason why those of us with this disease “don’t look sick” is because you never see us when the disease is at its worst.
I’m still able to work on my web sites, and blog. There is a certain advantage to working from home, for yourself: no worries about whether to call in sick, or about people thinking you’re being surly or unfriendly when you’re simply in a great deal of pain, or about feeling like your employers or co-workers are holding your disability against you.
The disadvantage, of course, is that you make hardly any money.
I’m largely coping by stripping my life down to the essentials. Volunteering — something I used to do too much of, with relish — has been all but abandoned. I discovered last spring that when I scaled back my volunteer commitments during a flare, my productivity shot up — despite the flare. That told me something: stop being distracted by non-remunerative activities and start acting like a proper freelancer.
The decision was not hurt by the fact that the groups for which I’ve been volunteering have had more than their share of personal drama; stepping back from that, either in whole or in part, has helped as well.
My social life has taken a pounding, since I hardly leave the house. Though I have friends in Shawville, it is a bit isolated here. Many friends out of town either can’t (i.e., no car) or don’t visit, which puts the onus on us to travel into the city. That’s a 2½-3-hour round trip, at a time when I need to sit or lie down frequently. Our excursions into Ottawa, for reptile and train shows, shopping, or just general sociability, have been very good for me on a social level, but very hard on me on a physical level. The two or three days after such outings have been, um, profound.
Five (going on six) weeks is a long time for a flare; my expectations are for two to three weeks. This too shall pass. I hope.