running

Me training for the Brooklyn 1/2 Marathon

I get a lot of email from people asking me, “How do you do it? How do you continue to exercise with Lyme?” The honest truth is, I haven’t a clue. It’s a mystery to me how I can still not only compete, but continue to excel (to some extent) while dealing with Lyme. It’s all very confusing. Even my LLMD is stumped. He thinks Bartonella is my main issue, but I can tell he’s reaching for an answer.

But whatever… my Bart issues are not the point of this post. The point is how do I make it all work? Well, I’ll tell you…

This will be the first in a series of posts I’ll make covering my approach to exercising with Lyme. Of course, all of the usual disclaimers come with these posts — I’m not a doctor, everyone’s illness is different and what works for me might kill you (literally). Take what I say with an enormous grain of salt. Use what works for you and trash the rest.

My approach centers on the following concepts:

1: Focus on today, but train for tomorrow
Every workout should be a quality effort, but what you do today shouldn’t prevent you from doing it again tomorrow. Learn your boundaries. I’ll explain how I approach this.

2: Listen to your body
Right now, your brain doesn’t like your body. Your body’s keeping your brain from doing the things it wants. It’s going to tell you to flog your body for being insubordinate and that you can do more than you really can. Don’t listen. Your brain’s a liar. Your body will tell you the truth. I’ll explain how I’ve learned to shut out my brain and only listen to my body.

3: Support the effort
You body’s fighting a real battle inside. You need to support it. There are a couple of supplements that I think are key to exercise performance while dealing with Lyme.

4: Eat smart
If you’ve been dealing with Lyme for even a little while you’ve probably already cleaned up your diet to some extent. This is incredibly important, but there are a few additional things to pay attention to when working exercise into the mix. I’ll tell you what I do.

I’ll break down each of the above into separate posts for easier reading. They’ll be posted in the coming weeks so stay tuned. Now, however, I thought I’d sort of back up a bit and do quick recap of what’s happened to me over the last year and a half and explain how I’ve worked exercise back into my life.

A quick recap for those of you who just walked in

Before I was struck with Lyme back in September 2007 I was in the best shape of my life. I was a serious contender for placing in my age group in the races I was entering, I could run a mile faster than I could in high school and was running or biking more miles in a month than most people do in a year. However, after the disease struck, I could barely sit up for very long let alone swim, bike or run anywhere. I felt like I weighed 4,000 lbs. and hadn’t slept since I was born. The fatigue was crushing.

This frightening and debilitating acute phase lasted about eight days until a well meaning doctor put me on 10 days of penicillin for what he suspected was strep throat. At the time, a horrific sore throat was my greatest complaint. It felt like I had chugged a bottle of Drano to wash down the nails I had just swallowed. It was by far the worst sore throat of my life.

I improved greatly on the penicillin and we all assumed I was on the rebound, but for weeks and months I lingered in this limbo land of half health. On a good day I felt 75% of what I called baseline functioning. Meaning, take away all the exercise I was doing I was still only about 3/4ths of the way there. I was no longer in bed, but I wasn’t really gettin’ it done.

I felt like crap, I couldn’t sleep and was really starting to feel my life, as I had known it, slipping away. Previously to all this, when I felt bad or stressed, I’d go out for a run, meditate on my problems and come home feeling clear and focused. At this point, however, going for a run felt like a titanic chore and it left me feeling worse. I napped a lot.

After six infuriating months of doing the “are you my doctor?” polka I finally figured out that Lyme was my issue and got into treatment.

Where am I today?

Part of the treatment process, at least for me, is staying active. In fact, multiple doctors told me that I should stay as active as possible. I’m not exactly sure they knew what they were suggesting because, luckily for me, a lot is still possible — far more than all but a few Lymies I’ve met. Still, I’ve tried to take the spirit of what they were getting at and combine it with my training knowledge to develop a framework to work within.

So far this has worked well for me. I’ve managed to avoid suffering a relapse of my initial acute phase symptoms, keep from getting injured and find a balance of effort that keeps me from feeling too wiped out to do what I need to do every day.

I’m by no means cured or even significantly recovered from my post acute phase symptoms. My main complaints are moderate, but brutally consistent, neurological issues. Mostly brain fog, trouble concentrating, confusion and some tingling in my extremities. I also suffer from regular fatigue though it’s not exhausting. More like I was up all night… which some times I am. My sleep is often hit or miss. There are other symptoms too, but if these were to go away I’d feel “cured.”

So how do I do it?

It’s not easy and it’s often frightening. I really fear that out there for me is the workout that kicks me all the way to the back to square one. I also sometimes fear that I’ll never really beat this thing until I stop exerting myself and just take it easy. However, in my mind, not working out is as bad, of not worse, than than feeling crappy all the time. It’s because of this that I keep at it.

Thanks for reading. Stay tuned for more.