In the middle of my second bout with lyme following a new tick bite, treatment has reduced the severity of symptoms in recent weeks. I’m no longer confined to bed by the terrible pain that was very nearly intolerable. I’m no longer on round-the-clock pain meds. But I still have debilitating symptoms. I do best if I rest.
The more active I am, the more the pain, numbness, and fatigue escalate. I try to cope with the help of hot baths, heating pads, and meditation. But on many days when I get up off the sofa and move around too long, I have to turn to pain meds.
What’s too long? That seems to be different for everyone, and different at various points in recovery. But one thing I’m sure of: Some exercise every day is important for healing.
The first time lyme knocked me out, I was in bed for several months. I remember finally returning to work, and struggling to drag myself up the ramp in the underground parking garage to get to the elevator.
My lyme was vastly improved, but my muscles had melted away. Very gradually, that walk became easier as I regained tone over many weeks of making that walk.
This time around, I am determined not to lose every ounce of my strength as I did before. So a week ago, I began walking to the end of the block and back.
Some days, that short stint was a trial. And most days, within an hour I started feeling sick and in pain.
Nonetheless, this week I upped it to 20 minutes a day, a slow ramble down a local bike path with beautiful scenery that lifts my spirits. If 20 minutes triggers heavy symptoms, I cut back the next day. But I’m committed to that daily walk, even if it is the only time I can manage on my feet.
As those recovering from lyme know, once you’ve tipped the scale and triggered pain and fatigue, it’s two steps backward to your one hard-won step forward.
Case in point: I walked too much last Thursday and spent the 48 hours paying for it, in bed and miserable with pain.
So how much is too much?
My acupuncturist had some wise words of advice for me on that subject, advice I’ve found incredibly hard to follow despite its simplicity. Some days I do better than others, but I am learning.
He warned that as I started to feel better, I would think I was cured. So I’d resume what was once a normal level of activity. And then I would crash.
The key, he’d found when he was recovering from lyme himself, is to start with half of what seems possible and adjust up or down from there after seeing how you do.
He said, “Think you can walk 20 minutes? Walk 10 and see how you feel later. Think you fell well enough to do all the laundry? Do one load, fold it, and see how you feel the next day.”
He’s back to a more-than-full work schedule and the mountain biking he loves, so I’m following his lead. It’s common sense, really: Listen to you body. I find that hard to do when I’ve been inactive so long I can’t imagine riding a bike, hiking, or rock climbing ever again.
But try breaking your activity down into baby steps, then monitor your body’s reaction. Accept that today you may only manage five minutes, but with careful attention to your body you can work your way up over time. Focus on the long-term, not the temporary set-backs.
Can’t leave the house yet? Don’t beat yourself up. I remember the days when I could only stand long enough to empty the top rack of the dishwasher, but stretching to pick up a glass and walking to the cabinet with it was my exercise as I concentrated hard on working those muscles. For the worst days, I found a video on You Tube with a yoga routine you can do lying in bed. And check out this review on the Touched by Lyme blog about the book Sunlight Chair Yoga, for people who are too ill for their usual forms of exercise.
So don’t be afraid to exercise. And don’t be discouraged by baby steps. We’ve got to start where we are, and build our way back over time. That’s just the nature of lyme recovery. Start by doing half, listen to your body, and take it from there.