A sarcoidosis perspective on cycling

My cycling has come a long way since I began lamenting the difficulties of riding while dealing with sarcoidosis and the multiple medications to keep it at bay.

The worst year was 2019, where, as I’ve written I was so beset with side-effects that I couldn’t complete my everyday ride from my house, having to call my wife to come pick me up.

I’ve talked about it a lot on the FSR Sarc Fighter Podcast.

These days, five years later, I am easily able to complete that ride.  I often do and sometimes add on a few miles. But it’s not like the good old days. Not like the days before sarcoidosis.

I like to save the data from my Garmin GPS device and on an app used by outdoor enthusiasts called Strava.  Follow me on Strava.

And, I’m just not as fast as I was back then.  I’m training and riding a lot, but those miles are harder to complete and it’s a bit disheartening.

But then, I look at some of the cool places I’m still able to ride, and it helps me keep things in perspective.

Oh, the places you’ll go…

Last week, I rode through the Blue Ridge Tunnel near Crozet, Va. The trail is a 4-mile out-and-back route. That’s a short bike ride but the experience is worth it.  The tunnel was once the longest railroad tunnel in the United States.

Once you enter, you can barely see the proverbial light at the end of the tunnel.  It’s a cool rail trail project and easily completed by walkers as well as cyclists.  Many people were pushing youngsters in strollers.

It was a cool experience and made for a nice story at WSLS-10 where I work as an anchor and reporter.

Checking out Cleveland on a bike

About a month ago I visited the Cleveland Clinic for a series of doctor appointments and an MRI. 

With one afternoon free, I rented a bike and cruised around Cleveland, which I found beautiful and inviting – if just a bit intimidating.

You can watch my vlog about cycling in Cleveland here.

A cool bike shop called Joy Machines, rented me a hybrid and I set off to see if I could find my way along the shore of Lake Erie.

I couldn’t.

Penetrating downtown with all of it’s traffic was too much. I wasn’t ready for all that. In theory I should have been able to find a series of streets to take me behind the Rock and Roll Hall of Fame, and along the lakefront.

Alas, I found another trail that meandered south and was just as interesting. It’s the northern side of the Ohio and Erie Canalway. I had ridden two other sections of this trail — only much further south. I found the northern end to be heavily industrial — but just as interesting.

In this case — it was a ride I never would have done had I not been in town for Sarcoidosis treatment.

Hmmmm.

The road less traveled

An emerging sector in the cycling world is gravel riding.  Bikes specifically designed for riding on dirt roads have made the experience much more comfortable.  (read: your ass isn’t being beaten up by the rough surface of the road.)

I’ve enjoyed several rides on my gravel bike, getting out and seeing the countryside without the hassle and fear of being run off the road by cars. 

If there was a type of riding where performance metrics drop to the side, it’s gravel riding. There is no insinuation that you should be trying to race or otherwise pace yourself against the group. Yes, the journey is the destination, and though that expression is overused, it’s true here, and it works if your goal is pure enjoyment from riding a bike.

But you can still do hard things on a bicycle

I’m training for an undertaking about two weeks from now in which I will ride and camp my way across New York State on the Empire State Trail from Buffalo to Albany.  It’s about 400 miles in eight days.

I’ve never done anything like this before, and yes – I’m worried.

I’ll be riding the gravel bike because about sixty percent of the path is unpaved.  We will be with a big tour group – and camping every night at designated stops along the way.  While it’s still awesome machinery, the gravel bike takes a lot more effort than my light road bike.

I’ve never piled those kinds of miles up one day after the other.  I haven’t slept in a tent in more than two decades.  I’m worried about saddle sores from all the seat time.  And there’s that pesky sarcoidosis lurking in the background, which keeps me from being my full self. 

So I wonder if my legs will recover from one day to the next.  Because I can tell you that even with a good night’s sleep here at home in my air-conditioned house, I wake up the morning after a ride feeling like I can’t walk up the stairs.

Making matters worse, I often wake up in the night with legs cramps or spasms, which I attribute to the permanent damage to my spinal cord from sarc.  It has made it so certain leg muscles just don’t trigger the way they are supposed to.  That means other muscles need to take up the slack.  Which means those muscles get more worn out.

It’s just a bunch of domino-tumbling issues.

I guess I should admit that I’m just getting older too. 

Sarcoidosis take aways

At the end of the day, I need to give myself a dose of perspective.  There are a lot of people who at my age who don’t have sarcoidosis and who are unable to ride a bike or choose not to for a myriad of reasons.

I’m still having a great time in the saddle, even if it’s much slower than before, while needing to accept that recovery times are greater.

But whether it’s an old railroad tunnel or the rusty side of Cleveland, I’m seeing cool parts of the world and ready to take on new challenges like the Empire Trail Ride. 

I’ve had to learn to that collecting experiences is more important than winning my age group.