my story, thoughts

Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured? 

I am grateful every day for my energy and stamina. However… I still have an invisible and very real illness. I believe that my symptoms and stamina are so high in part because I am very careful about two crucial things: Sleep and diet. All else being equal (which of course is not the case for many people much of the time), sleep and diet help my resilience. If I am resilient and my immune system is well supported, then I can bounce back more easily when something happens, whether it is bad luck (a cold), lack of discipline (yes, we all have that!), or a choice (such as travel, especially a work trip).

For sleep, my general goal is a regular bedtime, adjusted to around 9pm when I’m feeling worse, and before 11pm when I’m feeling better. I never set an alarm but usually wake up around 6:30am. For diet, I eat a lot of vegetables, fermented foods (kombucha and yogurt mostly), grass feed / free range meat, almost no wheat, and generally very little starch. Fruit as well, though much less than vegetables.

This doesn’t mean I never have bad days. Those are there, and they are my reminder to keep up the work of watching sleep and diet. They also keep me grateful for the good :). It does not mean travel is the same for me as a colleague or family member. It just means that when my symptoms flare up, they are less likely to spiral down into a full-blown relapse. And after 2 years of no major relapse it means I am more willing to trust that if I have a bad day, it won’t become a bad semester.

So I did a couple of things to make the trip easier — timed it to avoid very light nights or early mornings; brought my cane with me; skipped to the front of the line if I was starting to feel fatigued; even accepted transport at one point in the airport. The travel was painful and tiring, and at one point I wondered, as I often do over the years, whether I was just being wimpy (or pick your adjective). But some switch flipped and on the last of the four flights involved in this trip, I felt normal. Travel tired, yes. But painfully tired, in that intense way that the other flights were, no. It reminded me what normal travel used to be, and was such a contrast to the rest of the trip that I was almost skipping my way down the airport. This lasted until partway home, when I crashed. It’s always been an unexpected blessing to me that I get these little windows into normal in between the difficult, I think they are there to remind me what to aim for. At any rate, I came home and took a day off to recuperate. Right now is day two and I am lying in bed having just slept over 13 hours with swollen lymph nodes, a headache, a sore back, and fatigue.On the upside, I did not have trouble sleeping and I am hoping that after a few more slow days this will begin to fade. Could be jet lag (4 day trip, very intense, 3 hour time change both ways); feels like jet lag++. And I trust my gut that it is more thanks to my brief reminder of what less is.

Anyway I just wanted to share one small window into what ‘better’ means for me.

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