I'm back to feeling pessimistic about my health and the prospect of ever regaining my former level of fitness. Perhaps I've been spending too much time on thyroid forums. I found one devoted to Graves Disease and the community has been helpful — I post my labs and others legitimize my complaints. "Your T3 is too high; that often causes shortness of breath." I read through their experiences, identify with their symptoms and take heart in their successes. I feel gratified, like I've found my people. And then I realize this is a forum for sick people. I miss the days of spending my time on the MTBR forums, asking questions about wheel size.
One woman has pushed the idea of looking for "environmental triggers" that increase autoimmune response — allergens, smoke, chemicals, certain foods. It haven't found studies on this, and it's difficult to convince myself this is a real problem. She's adverse to cleaning products and can only use the most gentle natural substances without triggering thyroid symptoms. I definitely thought "that can't be a thing" ... until yesterday, when I was using a bleach-based spray to scrub the pinkish mineral deposits from shower tiles. I made the mistake of spraying down a large area, then kneeling right down into it. After a minute my eyes began to burn and I erupted into a violent coughing fit. By the time I rushed into the next room for fresh air, my airways were tightening. I pounded up the stairs, wracked with painfully suppressed coughs, eyes clamped shut, snot streaming from my nose, gasping for air. I came close to calling 911 — the phone was in my hand — but gradually the coughs subsided and I could breathe again. It was awful. I've never had a reaction like that to anything.
After everything calmed down, I figured I was overreacting. Still, my eyes and throat burned, and I felt somewhat sick to my stomach for the rest of the day. Interestingly, I also seemed to experience a spike in "hyper" symptoms. My heart rate shot up to 105 and stayed there. I had hand tremors and jitteriness hours later. It seemed likely this was just leftover stress from my morning scare, so I still opted to head out on my bike to meet Beat as planned. That was a mistake. I felt short of breath during the long descent, and somewhat dizzy by the time I arrived in town. By then I was committed and had no choice but to ride the long climb home. Beat offered to ride ahead, get the car, and pick me up at a trailhead halfway up the hill. It took me nearly that long to muddle through half of the miles that Beat covered. As I sat on a rock waiting for him, I ruminated about what a feeble person I'm becoming. A few whiffs of bleach and my day is ruined.
Ugh. I've actually felt hyperthyroid for most of the month, and my June 12 labs confirmed that my T3 was (is?) too high. Starting the Bryce 100 was probably a mistake, but I can't take it back. The main reason I've been haunting online forums for tips and reassurance is because my endocrinologist wants me to stick with the status quo for now. The forum people tell me the rollercoaster is common. Treatment is specific to the individual, and it takes time to find the right balance. But after four months of treatment, my optimism is beginning to wear off. I know four months isn't a long period of time. It's still long enough to imagine what life will be like if things are always this way. It's going to have to be different. I won't be able to run an ultramarathon on a whim anymore. Possibly I won't be able to run an ultramarathon at all. So the reluctant struggle toward acceptance begins anew.
As long as I can keep hiking, I'll be okay. Beat and I went to James Peak on Sunday. My breathing was bad, and worsened as we climbed to 13,000 feet. Because of that, I felt rundown and frustrated. Mostly I felt frustrated. Frustration is an ego-based emotion, so I worked on adjusting my outlook as I plodded upward through the stunning landscape.
It was as beautiful as a summer day can be — pleasantly warm, nearly windless, with bluebird skies above a cloud layer that hung over the plains.
Beat on James Peak. As usual, he bounced back from Bryce 100 like it was a conventional weekend stroll. I admit I hear about others' training efforts and feel envy for their confidence and seemingly dependable bodies. For more than ten years now, I've looking to adventure planning and goals as a way to keep momentum going — physically, socially, and creatively. It has been and will continue to be difficult to adjust my outlook, and not just let nihilism take over.
Beat challenged me to consider where I'll be ten years from now. He likes to think big — finally vanquishing my demons on the Tour Divide, writing a best-selling book, moving to a cottage in Switzerland. I find myself thinking, "Alive. Alive would be nice." Somewhere in there is a happy medium where I hope to spend the next decade. I could start by siphoning my creative energy away from adventure, building it from other sources, and directing it toward a wider range of projects.
Until then, I can still draw a lot of peace and satisfaction from even these more-difficult-than-they-should-be outings. Although I have ambitions for next year's Iditarod, I'm trying to remove the internalized pressure. And there will definitely be no racing before then. In the meantime, I'll continue to work on stabilizing this rollercoaster and directing whatever energy's left to more productive and satisfying projects. If I'm healthy enough to hike in the mountains, I'm healthy enough.
One woman has pushed the idea of looking for "environmental triggers" that increase autoimmune response — allergens, smoke, chemicals, certain foods. It haven't found studies on this, and it's difficult to convince myself this is a real problem. She's adverse to cleaning products and can only use the most gentle natural substances without triggering thyroid symptoms. I definitely thought "that can't be a thing" ... until yesterday, when I was using a bleach-based spray to scrub the pinkish mineral deposits from shower tiles. I made the mistake of spraying down a large area, then kneeling right down into it. After a minute my eyes began to burn and I erupted into a violent coughing fit. By the time I rushed into the next room for fresh air, my airways were tightening. I pounded up the stairs, wracked with painfully suppressed coughs, eyes clamped shut, snot streaming from my nose, gasping for air. I came close to calling 911 — the phone was in my hand — but gradually the coughs subsided and I could breathe again. It was awful. I've never had a reaction like that to anything.
After everything calmed down, I figured I was overreacting. Still, my eyes and throat burned, and I felt somewhat sick to my stomach for the rest of the day. Interestingly, I also seemed to experience a spike in "hyper" symptoms. My heart rate shot up to 105 and stayed there. I had hand tremors and jitteriness hours later. It seemed likely this was just leftover stress from my morning scare, so I still opted to head out on my bike to meet Beat as planned. That was a mistake. I felt short of breath during the long descent, and somewhat dizzy by the time I arrived in town. By then I was committed and had no choice but to ride the long climb home. Beat offered to ride ahead, get the car, and pick me up at a trailhead halfway up the hill. It took me nearly that long to muddle through half of the miles that Beat covered. As I sat on a rock waiting for him, I ruminated about what a feeble person I'm becoming. A few whiffs of bleach and my day is ruined.
Ugh. I've actually felt hyperthyroid for most of the month, and my June 12 labs confirmed that my T3 was (is?) too high. Starting the Bryce 100 was probably a mistake, but I can't take it back. The main reason I've been haunting online forums for tips and reassurance is because my endocrinologist wants me to stick with the status quo for now. The forum people tell me the rollercoaster is common. Treatment is specific to the individual, and it takes time to find the right balance. But after four months of treatment, my optimism is beginning to wear off. I know four months isn't a long period of time. It's still long enough to imagine what life will be like if things are always this way. It's going to have to be different. I won't be able to run an ultramarathon on a whim anymore. Possibly I won't be able to run an ultramarathon at all. So the reluctant struggle toward acceptance begins anew.
As long as I can keep hiking, I'll be okay. Beat and I went to James Peak on Sunday. My breathing was bad, and worsened as we climbed to 13,000 feet. Because of that, I felt rundown and frustrated. Mostly I felt frustrated. Frustration is an ego-based emotion, so I worked on adjusting my outlook as I plodded upward through the stunning landscape.
It was as beautiful as a summer day can be — pleasantly warm, nearly windless, with bluebird skies above a cloud layer that hung over the plains.
Beat on James Peak. As usual, he bounced back from Bryce 100 like it was a conventional weekend stroll. I admit I hear about others' training efforts and feel envy for their confidence and seemingly dependable bodies. For more than ten years now, I've looking to adventure planning and goals as a way to keep momentum going — physically, socially, and creatively. It has been and will continue to be difficult to adjust my outlook, and not just let nihilism take over.
Beat challenged me to consider where I'll be ten years from now. He likes to think big — finally vanquishing my demons on the Tour Divide, writing a best-selling book, moving to a cottage in Switzerland. I find myself thinking, "Alive. Alive would be nice." Somewhere in there is a happy medium where I hope to spend the next decade. I could start by siphoning my creative energy away from adventure, building it from other sources, and directing it toward a wider range of projects.
Until then, I can still draw a lot of peace and satisfaction from even these more-difficult-than-they-should-be outings. Although I have ambitions for next year's Iditarod, I'm trying to remove the internalized pressure. And there will definitely be no racing before then. In the meantime, I'll continue to work on stabilizing this rollercoaster and directing whatever energy's left to more productive and satisfying projects. If I'm healthy enough to hike in the mountains, I'm healthy enough.
Jill, sorry to hear of your setbacks. Maybe you might feel better about your progress if you weren't comparing your fitness with all of these Ultra people. 99% of the people on earth couldn't keep up with them on their best day. You will no doubt get better with time. To what level is the question.
ReplyDeleteBest wishes,
Martyuma
As someone who has lived with two autoimmune diseases for the better part of two decades, I can say one thing for sure - stay away from those forums! The only people who post there are the ones who are totally focused on their disease and usually are not doing well. They seem to adopt their disease as their identity. You aren't going down that road.
ReplyDeleteI'm really sorry that your health has been rough recently. I do think that you'll get back on that road to better health but... even if you don't... you can find ways to feed your soul with activity and wilderness and adventure, without being a competitive athlete. I feel sure that you can. I managed, and being an athlete was the number one thing in my life for a very long time.
I laughed at your observation about forums. Absolutely true. I think it's just nice to have a place where people don't (virtually) roll their eyes when you vent about this subject. Eye-rolling is something I imagine happens with some frequency in my real life and on this blog. At least forum folks have a deeper level of understanding and empathy, even if they're (and perhaps I'm) a bit too fixated on this ethereal and ultimately uncontrollable thing.
DeleteMy disappointment with my physical state is not really about competing or even racing. I've long enjoyed the intensity and satisfaction of testing my limits, and fear I can't return to an emotional place where I can similarly enjoy the little things. You're right that I can find a way — obviously I'm still in a pretty good place, and know that people have adjusted to much worse, and I am grateful for what I have. But the prospect of never again approaching that hard edge does leave me with an empty feeling that I'll either have to accept or find something else to fill it with. I'm glad you've found fulfillment.
This comment is not exactly in perfect parallel with your disease, but perhaps it will help in some small way. I agree with K B Bear about the "forums." I led a healthy outdoor life, running mountain races, including Pikes Peak Marathon, etc., until a faulty gene finally tripped about 10 years ago and left me with a chronic blood clot disorder, half of the time resulting in embolisms to lungs. I thought it was OVER, not just my outdoor passions, but my life, literally. I hung out on the Blood Clot Alliance Forum, and it only reinforced the negative side of my disorder with horror stories, anger, depression, hopelessness, despair, and yes, even death. On blood thinners for life, now, and my docs all told me to sell my mountain bike and give up climbing as one fall or crash could cause an internal "bleed out," a cerebral hemorrhage being the likeliest thing. Long story short, I didn't (couldn't) give up the things that get me out of bed every day, went out and bought a new Fat Tire (3 inch) "Bad Habit" Cannondale full suspension and continue to climb and hike and live life on my terms. Last week an older (my age) hiker fell while climbing around Sneffels and Gilpin and died from internal bleeding. Those kinds of "headlines" are why I quit reading the forums...not to stick my head in the sand...but because it pulls me to the dark side of what might happen to me someday instead of the joy of what I am still doing until, if and when, that day comes. What if "that day" never comes?
ReplyDeleteWhat if your condition does prove to be "manageable?"
I don't race any more... and I walk my bike down the gnarly shit. But I'm still out there, and I think you will be too. One day at a time,
mark
Well said, Mark! I've stopped even admitting to riding a mountain bike to my doctors because they invariably lecture me about how dangerous it is for me. I'm like you - I'm out there, and I find huge joy in it even if I sometimes limit the risks I take (like walking gnarly downhills!).
DeleteI had that same problem when I bleached my hair one time. Bleach is highly toxic and the fumes are an issue for everyone - probably not related to thyroid issues!
ReplyDeleteStop reading those sites....that's my advice :P
P.S. Also, stop scrubbing showers, get a cleaning service!
ReplyDeleteThis post has been sitting in my reader for a while, but I'd put off reading it. Maybe because I'd enjoyed you being hopeful about recovery. I could have written this though: "For more than ten years now, I've looking to adventure planning and goals as a way to keep momentum going — physically, socially, and creatively. It has been and will continue to be difficult to adjust my outlook, and not just let nihilism take over." (although I'd have probably been more likely to say fifteen years). Am I even me if I can't test my limits? Oh well, could be worse. I keep telling myself.
ReplyDelete