I'm taking a cue from colleague (and friend) Rob Adams and his Project 365 blog, in which I hope to try to document my (likely boring) days as time goes on if nothing else but for health reasons. I could use apps, but they feel too cookie cutter.
I'm more of a simplistic type. Or really, if I had the patience, I'd code an app myself. But I have neither the patience nor the skills, to be frank.
I figure if I document my day like this, I could:
Refer to it and edit it anywhere I have a web browser and an internet connection
Refer my medical team to it if they so desired
Track how I feel better than a spreadsheet (although that's not a terrible idea either)
I want to be upfront and advise that sometimes I may just type and type without it making sense, and so be it if that's the case. In that regard, I'm just using this as a way to empty my brain, and it's because I can't sleep.
But mostly it'll be used to track how I have felt during the day, if I accomplished anything in particular, etc.
In today's instance, I feel lousy and have for just about the entire day. I use HRV to track/justify how I have been feeling. It's been a pretty good indicator to crosscheck that if I feel fatigued/tired/worn out, my body actually does feel that way. When I'm feeling well, my HRV sits around 50-70 ms. Compare that to when I don't feel well, it's under 20 ms.
As Harvard Health notes in this excellent explainer, “HRV may offer a noninvasive way to signal imbalances in the autonomic nervous system.”
Other than feeling poor for most of the day, my right hand, arm and elbow is back to hurting again. I have been doing a lot of computer work since the MLB Draft started about a week ago and have written half a dozen or more articles in that span. Basically, more than I have written in one week, ever. If the nerve conduction study I had done a few weeks ago came back normal, then I don't know what it could be. When I was going to occupational therapy, the therapist said that everything I was describing how I felt lined up with a nerve issue, but my neurologist said that was impossible based on the test result.
I don't know who's correct, all I know is that my hand hurts enough that I can't sleep.
I can't sit comfortably anywhere for an extended period. I also can't lie in bed comfortably for an extended period. I’ve been having more dizziness spells and haven’t felt like I was going to have another syncopal episode (felt like I was going to pass out) in a few weeks, so that’s good. I have been struggling to balance hydration levels and can’t figure out what the proper amount of fluids is. I can have a liter of fluids (coffee, water, etc.) and elimination looks fine, while I can drink 3L of fluids and have the same level of activity during the day and elimination looks far less than ideal.
I do not know what is triggering everything I’m dealing with but suspect neurogenic POTS. I have asked every doctor I have to test for this to ensure this is the situation, and have been waiting two years for them to decline the testing. I have a physical and neurological appointment next week, and will als inquire about testing for EDS. I suspect I have Hypermobile Ehlers-Danlos Syndrome (EDS), or something along those lines. I’ve been tested for so many things over the past few years, and everything has come back normal. The only test I had that came back abnormal was the small-fiber neuropathy test I did early 2023. The distal (ankle) location came back abnormal, so that explained the pain I have in my feet.
That doesn’t explain the issues I have elsewhere, though. I have itching all over because of peripheral neuropathy. It feels like I have bugs crawling all over, all the time. My little cat Brooke (the brown one) loves to sit on my lap when I watch TV, but she can’t sit for more than 5-10 minutes because I’ll start moving around as my legs start to itch or something.
I need to get some sleep since I have an early fasting blood test tomorrow morning (this morning?) but wanted to advise about what you see below. After every day, I’ll put how I felt overall through the day. How worn out was I? How much pain was I in? How was my day overall? I will probably log that part into a spreadsheet, so I have a way to track things day-to-day, but getting “pen to paper” really does help empty my head, even if this is close to 1000 words. They all won’t be this long, I promise.
Fatigue: 6/10 (0=not tired, could run a marathon, 10=very tired, could sleep for a week)
Pain: 5/10 (0= no pain, 10=pain is intolerable)
Overall: 4/10 (1= feels bad, 10=feels good)