I Stopped Riding My Bike. Part Three.
Hi all! This week, I've been chronicling the events that occurred this past year that led up to me no longer riding my bike. If you're just tuning in, check out the beginning of the story:
PART ONE: SOMETHING'S NOT QUITE RIGHT
PART TWO: ISN'T THIS PECULIAR?
PART THREE: THE CRAZY BIKE DISEASE
What I thought was a freak occurrence, a painful pins and needles feeling in my feet when I rode my bike, has now become more commonplace. It has started to happen on my 7 mile commute and the feeling is happening in my hands as well. It has evolved into more of a pain than a numbness. Eventually it starts happening off the bike as well. Some days, I get so tired.
I hide it well. I go to work. I keep my social commitments. I even coordinate long bike rides for Transportation Alternatives. They recognize my work and write an article about me in their magazine. I have the notion that if I keep pushing through and don't acknowledge this thing, it will go away. All the while, I feel lousy and no one knows.
Except my boyfriend who endures my exhaustion and mood swings with love. "We'll figure it out, together," he says. I don't deserve such kindness.
I am finally determined to fix this thing once and for all.
The thing is, I really don't know where to start. Try telling a doctor your primary concern is, "I just can't ride my bike like I used to."
I go through multiple appointments and tests with a general practitioner, a physical therapist, a neurologist, and finally a rheumatologist. Since I wait 4-5 weeks to get in with each specialist, the summer ends with no diagnosis. Only worsening symptoms. I hate my life.
I really try to keep at the bike riding but its getting more and more difficult. Early in September, I go on a group ride and I fall far behind. I am barely able to complete the rest of the ride and I am sick for the next couple of days. I feel like I have the flu but all I did was go out for a little bike ride.
The NYC Century comes and goes without me participating. Last year, I successfully did the 55 mile course with energy to spare. All over town I see people on bikes. I find myself bursting into tears when I see them and thinking what has happened to me?
I am heartbroken and emotional most all of the time. I pretty much stop riding my bike. And because I am not riding my bike, I don't have bicycle adventures to write about. I log off of tumblr for about a month because I don't have anything to say and I don't want to hear about other people's adventures.
Finally a diagnosis comes in at the end of September.
The crazy bike disease is an autoimmune disease where the body attacks itself, primarily the joints, organs, and skin. There is no cure and my doctor sets up a plan to manage the symptoms. It usually takes two months for the medicine to kick in. And I will have to manage it FOR THE REST OF MY LIFE.
I ask the doctor about riding my bike. She tells me that what I am feeling is partially due to the disease and partially because I have not been riding (A body at rest tends to stay at rest). But she encourages me to get physical exercise whenever possible. I know that in theory that sounds good. But the reality is far from it.
I feel defeated. People keep trying to cheer me up with talk of other people they knew that experienced lupus and did better. My own grandmother has the disease and is still living a relatively healthy life at 91. My boyfriend offers to get us a tandem bicycle. But nothing helps. I am miserable and just want to take a nap all of the time. I miss the life I had and it all seems so far away.
I am holding on to my last sliver of hope that somehow, sometime soon, I will be able to turn a corner.
(Photo by Ahron R. Foster)
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