....That Your Underlying Health Is Still in the Trash
This is probably going to get long, and I’m kind of a broken
record at this point. This will be the third post this year in which I detail
the ways in which I’ve been unable to move fully past my autoimmune condition, or made a mistake, or failed to be as
absolutely diligent as is necessary to keep my neurological symptoms at bay. I’ve
messed up, again, and the ramifications of doing so have me deeply contemplative.
So I’m gonna monologue for a bit.
I won a race a couple months ago. It was amazing, truly one
of the greatest days of my life. I overcame so much to get to that
point. I wrote about it here – About keeping neurological complications
at arm’s length and about the unusual ways in which my body failed to respond like
I’m accustomed to when racing.
When things are bad, as they’ve been lately, my fine motor
control and muscle function are noticeably impaired to a degree of, I dunno….lets say
30 percent. I twitch and shake, I bump into things, I drop things, I struggle sometimes
with balance. I had none of those problems during the race. But it was still
there, just a little…tiny…bit. Lets call it 2 or 3 percent now instead. My legs
wouldn’t respond quite the right way when running hard. They cramped and seized
early in the race and I had to fight my body the last 45 minutes of the race. I
won in large part, I think, not by outright running faster but by taking risks
on the technical sections and being willing to go all the way over the edge to
win a small local race.
I had been eating a lot of dried mango in the week leading
into the race. It was a food I had been eating a bit with some regularity in
small amounts, but only now was consuming the way I had been consuming
blueberries and bananas. And for whatever reason, it doesn’t work for me. It induces
neurological symptoms, to at least some degree. It became apparent as I
experimented the week after the race that the symptoms I described before my
first race – “intermittent headaches, cervical numbness, peripheral fatigue and
tingling” – came and went in concert with appreciable mango consumption.
Ok, so we found another food I probably shouldn’t be eating.
Easy enough – In fact I raced again the following week to better physical
results. This race was hillier and longer, a 25k trail race (or 26.5k, but who’s counting?)
in what they call “Mountain Maryland.” I lost – my 23rd (!!!) career
runner-up finish – but raced sooooo much better than I had the week prior. The
two of us ran together for 20k before I totally exploded hiking up a ~30% climb
with about 4 miles to go. While the week prior my body rebelled in the early
miles, this time I had no such problems. I raced normally, and it was great. At
this point, in early November, I felt so, so good about things.
A couple days later I got a flu shot. This was the third time
since the onset of my autoimmune condition that I’d done so. The first two were
basically fine – bad side effects, but difficult to assess any transient effect
on my neurological symptoms as they were far more present generally one and two
years ago. I had a day of obnoxious side effects again, and took it easy the
day after. On day 2, I ran twice just like I had planned. Problem was I shook
and trembled the entire way. I felt completely detached from my legs, which
simply didn’t move the way I wanted them to. It’s so weird to describe – its like
the dial-up internet of motor function, like I can think about moving my leg
and then sit and wait for it to finally happen. It’s a very shaky and unstable
feeling.
Anyway, I ran twice. Had to stop a bunch to rest. Finally
shuffled my way though an awkward 15 miles. And you know what? I did it again
the next day. I felt worse and worse as the run progressed, but I got it done. And again the day after that, but this time 22 miles of suck. My resting
heart rate was super elevated, I was having hot flashes, my limbs went numb whenever
I sat down, my neck and head hurt like hell. But I shuffled through 22 miles anyway.
Because I was too stubborn not to. And then I finally snapped a little bit.
Those three days had been my worst in months. I was only weeks removed from
feeling 100% normal and had 2 more races scheduled in the next few weeks. I was,
to put it mildly, frustrated. And I gave into those emotions – I pigged out on
cheese, salami, Naked fruit smoothies, plantain chips. Nothing acutely
terrible, but several things at once that would all negatively impact my health
and symptoms.
The next week, on
Thanksgiving, still not feeling quite normal, I trudged through a few miles
with my wife before completely giving up mid-run. Things just weren’t right and
I had had enough. I told her I was done, I went home and, this time, I gave in completely.
It was Thanksgiving after all, family was in town, and I hadn’t been quite
right in a couple weeks or more. So what fucking difference would it make if I
just let go and acted like a normal person? I drank hard cider, ate mashed potatoes
and gravy, ate ice cream…I did Thanksgiving. And I cooked a good turkey,
dammit.
And I felt it. I forced my way through the next day with ibuprofen
and coffee (itself a major trigger of symptoms that I’ve avoided for some time),
but spent the next couple days, including my 33rd birthday, largely in
bed. For months I had planned to run 33 miles on my birthday. Its something I
had done a couple times when younger and wanted to do again, in part as an exclamation
point on my triumph over my autoimmune condition. Instead I spent the day as I described
above - I twitched and shook, I bumped into things, I dropped things, I struggled
sometimes with balance. I laid on the couch and all my limbs went numb. I had a
really bad day.
It was, frankly, really depressing. And this is part of where I get particularly contemplative – for two and a half years I’ve felt like I’m not allowed be upset, or to feel disheartened or frustrated when things are bad. Honestly I feel I’ve been, at least in part, conditioned to feel that way. I’ve been dismissed so frequently that every time I allow myself to experience any human emotion, I feel like I’m providing ammunition to all the doctors who look at half a dozen adverse autoimmune markers and still think this is all in my head.
Last year I had a doctor accuse of me of not actually
wanting to be healthy. I tried to explain how massive a difference diet made – a
year later literally a difference between winning races and spending all day stuck
in bed, numb and twitchy. My approach was not only working, it was and is
validated by dozens of studies and academic papers, and a functional understanding
of evolutionary biology. But I couldn’t explain why I was approaching things
the way I was, because she was raising her voice and cutting me off. She was
accusing me of leaning into it, of choosing this, and enjoying this in some perverse
way. She was accusing me, if I declined to take an antidepressant for my
dizziness, numbness, migraines, impaired motor control, and stabbing neck,
face, and cerebral pain, of choosing this for myself and refusing to actually
solve the problem. This doctor was not alone in her assumptions.
I was positive for literally every marker of neuropsychiatric
lupus. Symptoms of that condition include acute confusional state, anxiety disorder,
cognitive dysfunction, mood disorder, and psychosis. I suffered (and when
things are bad, still sometimes suffer) from every one of those symptoms. Suffering
from mental, neurological, or cognitive symptoms does not mean I’m making this
shit up. I’m not faking anything because I like the attention, and I do not want
to be sick. It is, contrary to the opinion of seemingly every doctor and every
fucking wannabe medical expert, possible for the nervous system to be subject to
actual physical damage. Or to be the focus of a persistent autoimmune condition.
It does not have to be a goddamn serotonin problem. It does not have to be a
mental health problem. It can be a real, legitimate, physical disease.
But its been suggested, over and over, by doctors and
“experts” and even normal people in my life that its all in my head. And I
think I fight that specifically as hard as I can, for as long as I can. It
frankly fucking sucks to be so diligent about everything you do, all day every
day. It sucks to not be able to eat “normal” food without going numb and tripping
up the stairs. I should never have done
what I did. I should never have eaten those things. I shouldn’t have given in and invited a greater relapse of neurological problems.
But I did. I gave in. Twice in less than two weeks I failed
to be optimistic, and tough, and strong. I’ve so relentlessly pursued a return
to health and fitness. I’ve run and lived and existed through so much pain and
discomfort and impaired function and every so often I’ve failed to keep my head
screwed on straight. And it makes me fail like a failure. Like I’ve compromised
myself as a person, and proved right all the doctors and people who think I’m making
this up, or who think I’m some kind of vaccine conspiracy theorist, or have
completely refused to honestly engage with me for whatever other reason.
So where am I now? I’m trying to let go of all that and move
on. I don’t really expect anyone wants to read all this but being open about my
experiences helps me do those things. I’m trying to forgot about the doctors
who have dismissed my condition or tried to simply diagnose me with depression,
and accept that every so often I’m going to feel unhappy and frustrated with where
my health is at, and that’s fine. I’m trying to accept it as part of the
process, rather than view it as weakness or failure. More immediately, I’m about
to start my third week- (or so) long fast. I actually feel pretty decent now
and am exercising a bit, but given that my underlying health hasn’t progressed as
far as I’d been assuming a month or two ago, I think it prudent to fast for a
while and see if I can’t take another significant step forward.
Within two weeks, I’m going to feel “perfect” and be running every day. I’ll get back to it, training every day and eating the few things that don’t trigger any symptoms (no mango!) with no real plans to expand my diet any time soon. I don’t think there will be any racing until maybe April or so, but I’m planning on being in much better shape than I was this fall. I don’t have any specific goals in mind right now, but I do think my best races are still in front of me. I am persistently optimistic that this will be the case. And I’m hoping to get there, and be fully healthy, some time in the next calendar year. I guess we'll see...
Thanks for reading. All the best
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