When I started this website over six years ago, the first decision I made was that it was not about me, but rather, about bicycling. If I did write about myself, it was in the service of a larger point.
Today, I’m breaking that rule.
If there’s a larger message to come out of this, I don’t know what it is.
I have struggled with whether to write this. But I have been open in discussing my diabetes up to this point; to not finish the story seems somehow dishonest.
And it affects my ability to maintain this site and bring you the bike news you’ve come to expect.
So if you’re interested, read on. If not, no hard feelings; feel free to skip it and come back another time.
Either way, we’ll be back to discussing bikes in the next post. And you can find today’s Morning Links here.
……..
Let’s talk pain.
As a long-time cyclist, I thought I knew what it meant to suffer.
From the pain of struggling to make it up a tough climb or somehow make it back home when you ran out of gas miles before. To nursing bruised and broken bones and flesh, or debriding a massive case of road rash.
But nothing I’ve been through in 30-plus years of adult riding — or anything that came before — prepared me for what I’ve experienced this past summer, and the months since.
But at least now it has a name.
Diabetic Amyotrophy, to be exact.
Which means I beat the odds once again. First by developing diabetes without any of the usual risk factors other than a family history. Then developing a form of diabetic neuropathy that affects just 1% of adult diabetics.
I should play the lottery more often.
Unlike most medical conditions, it’s easy to point to when it began. According to my calendar, I took my last recreational bike ride in mid-June; my last ride for transportation at the end of July, as the pain started taking over my life and forcing me off my bike.
Surprisingly — both to me and my doctors — it came as I was gaining control over my diabetes.
When I was first diagnosed in April, I had an A1C — the key marker of diabetes, measuring blood sugar levels over a three-month period — of 14.5. A figure that was, quite literally, off the charts, as I discovered recently when I noticed the graph on my doctor’s wall only goes up to 12.5.
In fact, one of my doctors — I have a virtual peloton of physicians these days — said the biggest surprise was I hadn’t ended up in diabetic coma. Or worse.
No wonder I’d felt like crap.
Yet, despite being repeatedly told it would be impossible, I was able to bring my blood sugar back down to normal levels less than three months after my diagnoosis. My most recent A1C was just 5.8 — a level that would be on the high end of the normal range for a non-diabetic.
And through diet and medication alone, without having to go on insulin.
In fact, low blood sugar is a more of a problem these days, as I have to carefully monitor myself to keep from crashing.
As my diabetes improved, though, the pain increased. Until it became the single defining factor affecting my life.
My doctor advised me to just wait it out, guessing that it was my body’s reaction to lowering my blood sugar too far too fast. And that it would simply go away in time.
Instead, it continued to get worse. So I finally got a referral to a physician specializing in diabetes, and was lucky to find one who takes the Sherlock Holmes approach to diagnostics.
As in, when you have eliminated the impossible, whatever remains, however improbable, must be the truth.
So we began a months-long journey through a wide range of exotic blood and neurological tests in an attempt to discover what it wasn’t. Including some very scary things.
And once everything else had been considered and dismissed, we were left with this:
Diabetic amyotrophy, also known as proximal diabetic neuropathy, diabetic lumbosacral radiculoplexus neuropathy, and diabetic polyradiculoneuropathy, occurs in patients with diabetes (more likely in those with type II than type I). It usually involves weakness followed by wasting of muscles, and excruciating pain in the muscles of the thigh, hip, and buttocks.
Bingo. Although excruciating is putting it mildly.
What it doesn’t mention, though, is that the pain comes in three distinct flavors.
The first is a constant burning or freezing sensation in my feet, like they’re alternately on fire or encased in a block of ice.
Next comes uncontrollable muscle spasms in my calves and thighs lasting hours at a time, and resulting in a sensation like the lactic acid build-up that follows a hard ride. But many times worse.
Finally, I’m subject to intense, sudden shocks that come with no warning, strong enough to drop a grown man — namely me — to his knees. And striking anywhere from the waist down.
And I do mean anywhere.
Yes, even there.
You know those movies where they torture someone by shocking him with a car battery? My body doesn’t need any help to torture me. I can do that all by myself, without the need for external electricity.
The pain is constant, without relief, ranging from moderate to, by far, the worst pain I’ve ever felt, feared or imagined. Sometimes it’s just one of the three forms, at other times, all three at once.
And it’s worse at night. Much worse.
Which meant I spent most of my summer on the couch; awake all night from the pain, trying, usually unsuccessfully, not to wake my wife in the next room with my muffled cries of pain. Then curled up in a ball all day desperately trying to get the sleep I didn’t get the night before.
Relief, when it finally came, was in the form of a powerful anti-seizure medication used off-label for neuropathic pain. But it would only help for a day or two, at best, as my doctor slowly ratcheted up the dosage.
It wasn’t until a few weeks ago that it finally reached a level that offered any significant help. It doesn’t make the pain go away, but on a good day, helps bring it down to a more tolerable level.
Not that there are many of those.
Or more precisely, there are bad days, and less bad days.
On better days, I can function almost normally for a few hours, though even just going shopping with my wife is enough to wear me out. Going out on my own, unsupervised, requires cutting back on the amount of medication I take, and accepting the pain that comes with it.
And overdoing it means a relentless bout of pain that can last for days; it took over a week to get it back under control after spending just a few hours at the LACBC’s Firefly Ball recently.
There’s also a fine line between taking enough medication to control the pain and being unable to function. Too little and the pain knocks me on my ass; too much and I’m a virtual zombie until it finally wears off.
And even then, there’s no guarantee it will be enough to overcome the pain.
As a result, I’ve been unable to work, since I can’t commit to being anywhere, or being conscious enough to meet a deadline. Or guarantee that my head will be clear enough to be productive or that the pain won’t drive me back to bed.
Not that I have work to do. In fact, I haven’t worked a single day since the onset of my diabetes towards the end of last year.
Or an hour, for that matter.
It’s also kept me from making the changes I’ve wanted to this website; usually, it’s all I can do just to keep it going every day.
Or almost every day, as you may have noticed. Some days I’m just not up to the simple act of pounding out a new post.
And it’s kept me off my bike for nearly four months. While I’m determined to get back to riding, I don’t know when that will happen. Or if I can ever get back to riding the way I used to.
My life is now centered, not on the things I used to do, but the pills I have to take.
I’m finally starting to accept that.
Up to now, I’ve been fighting to overcome my pain and get back to normal. Now I’ve finally accepted that isn’t going to happen.
This is my new normal.
I have to accept that this is a chronic, and possibly permanent, condition. It may go away on its own someday, just as unexpectedly as it came on. Or it may be something I have to deal with all day, every day, for the rest of my life.
Fortunately, I’ve learned the hard way that I’m stronger than I thought I was. And I can endure more than I thought was humanly possible.
My challenge now is to find a way to live my life, regardless of what’s going on with my body. What that means, I have no idea.
But I’m looking forward to finding out.
And other people have overcome far worse.
