I almost titled this "Got the sads about Hope"
Sometimes, after a particularly hopeful moment or discovery. I get real sad. Mostly because none of these hopeful discoveries has brought my body back to full ability. I desperately still want full ability. Not olympic level athletics. But my full ability, ability I used to take for granted, ability to endure, to push, to sustain. My "if you can do that, I can do that" mind likes to think I have options still. But my body says otherwise.
A lot has been discovered in the last year. Let's catch up.
I learned my Vo2Max was incredibly blunted last summer, clocking in at a lovely 27 when it used to be in the 50's. This is basically a reading of how my body can endure, as a once endurance athlete I was very familiar with Vo2Max. That cardio/pulmonary testing revealed my body seemed to be working right, my lungs, heart and blood seemed to be doing what it was supposed to. But something, mysterious, is blunting my ability to endure, produce energy and power. That was a moment of hope, where I thought, with this data the medical folks can now help me! They can help me figure it out! But then radio silence, blank stares and shoulder shrugs. No one knows and I'm not doing so poorly that they care to find out.
After that I didn't know what to do. I fully stopped running. I kept at strength work, and taking amino acids, eating more protein, never skipping meals or snacks because that constant intake of food energy seemed to be the only thing keeping me upright and functioning.
Then mid-spring I discovered something, a new amino acid supplement had an ingredient that seemed to make me feel very good when I took it. Something called L-Carnitine. That started the google train. Holy shit. This isn't just a supplement, Carnitine is what brings energy into the mitocondria from our fuel sources. Our medium and long chain fatty acids, without it our body does not have energy to sustain life. Babies are tested for its deficiency because it can be deadly. There is a genetic marker. It can be brought on by illness....
I stumbled into another clue, I am a constant detective. We all knew something wasn't working in my mitocondria involving energy but NOT ONE person told me about Fatty Acid Oxidation Disorders. Why aren't we testing folks for this?
This whole time Ive been dealing with Long Covid I keep saying, SOMEONE KNOWS WHATS WRONG WITH ME. I just have to find that person to talk to. I have never thought it was something so mysterious I couldn't get to the bottom of it. I know fixing it is a whole other issue, but understanding it, I needed to keep trying for that.
My primary care doctor (who is not my favorite) finally, after about a month of me pushing, ordered me the blood test to see if my carnitine levels were low. Not shocking, they are. Below threshold. But "a finding of uncertain clinical significance' says the mayo clinic paper work. However here is that hope again, because this finding was of great significance to my body. My mind and limbs are working again, at a rate I hadn't seen in 3+ years. This one $13 drugstore supplement means I spent the last month living. Enjoying being with my kids in ways I don't think I ever have. I'm being honest about that. My quality of life has greatly, significantly improved.
I cant imagine how low my levels were a few years ago at my worst. I wish I had the blood markers for myself before covid and then, but I do have this one marker now. I can build on this.
It's not fixing everything. It could, or it could not. My body could heal now that its able to work better, or I could need this supplement to keep me kind of normal for the rest of my life. Exercise feels much better and all my body pain and tingly-ness is gone. But it still has its limits, I'm finding. Like a car filling up with gas or oil, once I use up my 'carnitine' supplemented levels I can feel just a shit as I did a few months ago. I don't get to see my gauge, I don't get a warning light when I am at a 1/4 tank. So I just have to do research and supplement often to keep my energy as even as I can.
Today I got pretty sad because my running goals seem to be too much for my current levels. Even very easy stuff. It feels better physically but it seems to 'use up' my energy for a day or two and I would rather be more consistent than highs and lows. So for now, after a month of the 'hope highs' I'm going back to being cautious there.
My next goal is finding a specialist who actually knows about all of this. I have spent a lot of money paying medical professionals to sit in their office and explain to them what is wrong with me, to educate them. I want someone to educate me.
But hope is a lovely beast worth chasing.
No comments:
Post a Comment