I am the Sick Cyclist

I'll be sick the rest of my life

I've been an athlete my whole life. It started with soccer when I was 10. It continued through high school with Cross Country and then onto the bike with racing in my 20's all the way to my 40's. Being an athlete and a cyclist has my identity for decades. All of that started to unravel in 2015.

I had stopped producing content because I didn't know what to make. Previously, it was all bike racing and training content. That can't be my focus now, mostly because that's not the main plot of my story anymore.

I won't go over the full timeline, it doesn't matter anymore anyway. I am where I am now. I will say it started with a sore throat that would come and go for a few months before it became permanent. That's not an exaggeration at all. I've had a sore throat for over 5 years now. Every. Fucking. Day. Imagine having strep throat for 5 years, that's basically me.

It was only pain, until it wasn't

For the first 18 months or so, it was only pain. Functionally, everything was still normal. I could talk, I could breathe, I could swallow. That all changed when we removed a tonsil in an attempt to find the cause for all the trouble. The idea was to remove and biopsy the tonsil to try and find the cause to all of this. That's when everything started to change.

After the surgery, my throat would never heal all the way. I began having a lot of functional issues with talking and swallowing and eventually breathing. After the surgery is when shit got real. The biopsy didn't find anything.

The diagnosis, years later

After the surgery shit-show, I found another Ear, Nose, and Throat doctor. Again, I'm leaving out the details out here for brevity sake, but after another year or two of different specialists - this brings us to 2017 - and tests, I got a primary diagnosis of CVID, or Common Variable Immunodeficiency.

Common Variable Immunodeficiency (CVID) is an antibody deficiency that leaves the immune system unable to defend against bacteria and viruses, resulting in recurrent and often severe infections primarily affecting the ears, sinuses, and respiratory tract.

Partner's in crime

The nasty part is that these things don't like to come to a party alone. Along with CVID, I have a secondary diagnosis of Wergners, which is actually the primary driver for most of my symptoms - we think.

Granulomatosis with polyangiitis can affect the ears, nose, throat, lungs, and kidneys. Blood flow to organs and tissues may be reduced, causing damage.
Symptoms may include sinus pain, cough, fever, joint aches, and hearing loss.
Treatments include drugs that suppress the immune system and monitoring for recurring symptoms.

That last part is the kicker, "Treatments include drugs that suppress the immune system and monitoring for recurring symptoms". So, I have an immunodeficiency and another conditions that need to have my immune system suppressed to control symptoms.

I've handled this all wrong

As things got worse, I swore I wouldn't let the diseases stop me. I promised I wouldn't make my life about being sick. The plan was to keep going - as best I could - and not let the diseases become a crutch. I was reading blogs and posts of people who only talked about being sick, who latched onto nicknames for the CVID community, "Zebras". I didn't want any part of that, I wasn't a Zebra, I was a fucking athlete. No one would know I was sick, I'd just put my head down and keep going.

That worked, for a while. It doesn't anymore. It started to feel like I was living a lie everyday. Lying to myself and everyone around me. Everyday is a struggle. I've had strings of days where I couldn't imagine having to wake up another day in so mcuh pain. Where I wished with everything that I could just die in my sleep. How was I supposed to survive another day like this one and the one before? Through all of these days and thoughts, I kept posting my rides to Instagram and Strva. I kept trying to train. If I'm going to be in pain and miserable regardless of what I do, I might as well try and keep doing things I love - that was the thought, it still basically is.

Starting now I have a new plan. These diseases have me, they'll almost certainly kill me. I can't change that, I can't control it. I can, and will, continue to fight it. I can control how I react and handle this challenge. I'm tired. I'm tired of pretending I'm fine. I'm tired of lying to everyone about how I'm doing. This sickness is part of my identity now regardless of liking it or not. I have a passenger I can never get rid of, so you all are going to meet them.

I had stopped producing content because I didn't know what to make. Previously, it was all bike racing and training content. That can't be my focus now, mostly because that's not the main plot of my story anymore.

So, what's next

So that's the reason for "The Sick Cyclist". This gives me the freedom to be me in a way I haven't allowed myself before. I'm still an athlete, I'm still a cyclist, but I'm also sick and always will be. That combination brings challenges, and challenges bring stories. Now I'll have the freedom to share those stories because I'm not trying to pretend it's not part of me.

I know this shift of content will not interest some and I'll lose a bit of an audience I had before, that's alright and expected. I do hope I'll get a bit of a different audience. I know there are a lot of people out there with similar issues, and some with much worse. More of us are chronically ill than most people know. Chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of USA. I'm obviously part of that group and more people need to know about us.

So, this is me, The Sick Cyclist. You'll start seeing from me again on YouTube. My Instagram content will shift a bit, so will Twitter. It'll be real, honest, and me - oh, and my bikes.

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