I’m fortunate that COVID hasn’t caused me the type of stress affecting a lot of people out there. In fact it’s been a positive in many ways. As well as I’ve been doing, I still felt like I was barely keeping up with a the world around me. I’ve made good use of the time/energy this year has afforded me. However, my aches and pains are creeping back up from lack of activity. If you’ve notice that picture of me where I’m looking j-j-j-jacked, that was the result of incredible perseverence and work in 2018. Shortly after that pic I stopped working out, and after recovering for a few weeks noticed being much happier psychologically, I was enjoying things again. Working out 3x/week took everything I had… but what of the strength I built in my muscles? For many years I struggled to stand in an idle position, after 10 minutes my back would hurt too much. I’d wait in like at the grocery store sitting down or leaning. If I stopped working out, would I be like that again?
Luckily, no! I found that I maintained enough strength simply by living a more active life in general. Unlike the old days I actually had treatments that worked enough that going out and doing stuff was worth the effort.
Well. I’ve become a bit of a couch- no, BED potato again this year. Aches and pains have crept back up, and it’s especially noticeable with housework that requirse pushing, pulling, lifting, bending, etc. Luckily I can rest up to mitigate the soreness, but I’m pondering how I’ll hold up when life demands more.
I never complain without ending by explaining what I’m gonna do about it. First of all, what I’m NOT gonna do is up the dose of any painkillers. In fact, I went a couple weeks without taking any kratom to see how I held up. I was sore, but I survived – and it was far more manageable than what I dealt with daily for years, so no big deal. I’m also not going to exercise… It’s not something I could realistically expect myself to keep up with at this point.
It’s time for me once again to dedicate this big sexy brain of mine to research and planning. I got to where I am by focusing on whichever symptom was my biggest obstacle at the time, then waking up every day to research causes, treatments, and start planning. That was how I spent most of 2015-2018. The last time I went full force into solving a health issue, it only took about a month to reduce a severe symptom to a non-issue. I was dealing with severe nausea. I hypothesized the cause: stimulants causing muscle stiffness/spasms and motor tics wrenching my gut throughout the day. I identified s medication most likely to treat the root cause, but couldn’t see the appropriate doc until a few weeks later – so I had my primary write me some Zofran in the meantime so my parents could stop waking up to bathroom walls coated in barf splatter. When I eventually stated my case and was prescribed what I suspected would be the solution – Tenex – my nausea problem stopped as soon as I started taking the drug.
So what’s my target now? Sleep trouble, specifically waking up during the night. A few years ago as I was exploring everything enjoyable in life, and one of those things was food. Food can be quite delicious did you know that? I didn’t! I chunked up for a couple years (happily), but the symptoms of obstructive sleep apnea started appearing. I was still busy tacking my ME/CFS symptoms back in early 2017, so I trusted the experts in the medical field to take care of sleep apnea. After all it’s a very common thing, not like the usual mysterious shit I was used to. It should be no problem for them, right? Nope, I spent a good part of the year getting even LESS sleep with an misconfigured machine sucking on my face. I told them to discontinue the CPAP and I lost weight. I started in the 230s, and when I got down to 205lbs I stopped waking up. I thought weight loss was a cure, but it merely can improve symptoms. Sleep disturbances returned a couple months later. I’m now around 190lbs and have been for a while. I’ve done everything I could to avoid that damn face-sucking machine, but could not solve the problem – it’s CPAP time again.
This time around I’m doing ALL the work. I’m picking out and buying the machine myself. I’m choosing and tweaking the settings. I’m downloading and interpreting the data. I’m doing it all, because that’s what it takes. I’ve spent the past couple months reading all about this process and luckily there are a lot of people out there who have taken this approach. There’s so much info out there about the process of fine-tuning the machine’s hidden admin controls and interpreting the sleep data it records. I was flying blind when it came to ME/CFS, navigating a minefield with my eyes closed. This time I can benefit from the mistakes others have made before me and hopefully reach my end goal even sooner than usual.
Still, it’s shit that this time around I can’t just swallow a pill or something. Trying to sleep with something strapped to your face goes against our most basic instincts as humans, we generally don’t care for it when something’s covering our mouth/nose. These insticts get much more automatic in dimished states of consciousness, like when we’re half-asleep. Even with the right settings, it’s going to take some time to get used to the thing… but I’m faced with forming/breaking difficult habits, I think back to what it took to change my diet and drop that weight – the first couple weeks are shitty, but then you get used to it and it becomes second nature. Hell, same deal when I quit smoking! I first switched to vaping which was tough for those first couple weeks without any cigarettes. But then vaping became the norm, I tapered off nicotine, and life was good. I never imagined I’d ever live without getting up to smoke every hour. Now if I need to do something with my hands I’ll just stroke my beard.
I’m going to put this off for one more week then dive in. I need to send some paperwork for my primary doc to sign an fax to the CPAP vendor to show that it’s medically necessary, but it’s one of those things that are a mere formality – they sign those papers all the time, you just gotta ask. I’ll need to start right away once it’s delivered because you get 30 days to figure out which type of mask is ideal for you. I’m almost certainly going to need a full face mask that covers both the nose and mouth, since a deviated septum/allergies make it tough to get enough oxygen breathing through my nose. The nose-only options seem more comfortable from what I’ve read but it’s pointless if I start using my mouth as soon as I’m asleep. Remarkably, some people TAPE their mouths shut to go this route but that sounds worse than a full facemask as it is. Others use a chin strap to encourage their mouth to stay shut. I’m not sure yet if I’ll give the nose-only option a shot first… it almost definitely won’t work, but if I get 30 days to try and return the different options then maybe it’s worth a try.
Once in a while if I’m in the right mood, solving these tough problems are a puzzle I’m willing to solve and overcoming these barriers just further builds my confidence. Most of the time though, I just feel like… enough already, you know? But hey, so long as there are solutions to my problems out there somewhere, I really can’t complain. For too long I was lead to believe that my only choice was to accept a shitty life. Nope. As Hulk Hogan says:
“That doesn’t work for me, brother!”