A quick update: After six weeks of progressively worse disability, I switched medication on October 26th to a different antibiotic. Within two days I was feeling as good as I had last august! Mostly, the change has stuck.
From the worst six weeks in a year, if not ever, to a relative high, I’ve been buffeted around by this illness so much that I can’t seem to keep up. One week, I’m researching what it takes to qualify as disabled (ok I had an ulterior motive — I was hoping I could bring my dog back to be with me as an assistance dog — she’s been staying with my parents because I don’t have time to exercise her and she could come to work with me and get exercise on the way in if she qualified as an assistance dog to someone with a disability). Another week I’m back to normal but afraid to write about it because after all how do I know it will last? I have a list of post topics developing, each out of date before I ever get to it. And another list that I just haven’t had the energy to write (don’t worry, they’ll get up here eventually).
But today’s topic is how to ride the highs and lows. When the symptoms of Sep/Oct lifted, I was ecstatic. Every day felt like a gift, each moment of energy an opportunity. I don’t wake up with a headache anymore, I have the energy to exercise again (like a switch was turned, I don’t even seem to need to build up my stamina), I can concentrate and write, don’t need to nap, …. The change seemed real not just to me but to those around me — people would look at my face and say, “Oh Jen, you’re feeling better!” Even so, one friend cautioned me that if I let my spirits rise to high, I’d have further to fall, while my husband simply could not allow himself to share my joy after only a day, or two, or a week. Are they right? Partly…
It’s only been 1.5 weeks, and I’ve already had to acknowledge that I’m still sick. First a head cold brought back some of my symptoms — luckily neither the cold nor the symptoms were severe, but they were a reminder that this is not suddenly over. Second, sleep is still a necessity, and lots of it. One night my kids were up and needing attention for an hour, and the next morning I had to stay in bed an extra 45 minutes before my morning flare faded. Third, I discovered yesterday that heat causes a flare up, and I’m still recovering. At work, a room with heating problems was overheated. 20 minutes into the meeting my light sensitivity increased, 30 minutes in I was resting my head on any available surface, 10 minutes later I finally realized what has happening and left … only to collapse, rest, and rest some more for the rest of the day. This morning things seemed better but now it’s lunch time and my pain, lymph nodes, and headaches are all plaguing me. Once again a nap is needed by mid day.
Either these problems are a sign of the long and bumpy road to healing, or they are a sign of the long and bumpy road toward accepting myself as I am. But in either case, they don’t negate the change that happened, or my joy in it, or the value of my ability to believe, once again, that I could get better. If they are, in fact, the signal to another downturn, I will most certainly be sad and angry, but part of me will also know that I have more strength than I ever believed before, that I can ride it out again, that there is hope that it will end. Whether I define healing as reaching spiritual equilibrium or in terms of physical achievement, the road to healing requires that I accept them.
Either the recent highs are a sign of healing, or they are a brief opportunity to rest and restore myself along the way to accepting what I have. They don’t negate the negatives, but the joy, happiness, and energy they bring me are in themselves a sort of medicine. I will revel in them while I can, I will ride them to their conclusion, and I will remember them when I need their warmth. Whether I define healing as reaching spiritual equilibrium or in terms of physical achievement, the road to healing benefits when I accept them.