Back To Work

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!”

The Importance of Environment

Think about the way your dentist’s office smells. When that smell is in the air, how does it affect you? Do you start to feel anxious or uncomfortable like you Would rather be anywhere else? Does it trigger memories of previous appointments, maybe that one time when the dentist poked the wrong spot and stabbed you in the gums?

Our environments have a much stronger influence on our feelings and behaviors than we often realize. Even when we’re consciously aware of some of a particular environment’s effects, there are others at play that we don’t realize. Personally, if I’m trying to accomplish something, the worst place I can be is the spot I wake up in every day: my bedroom.

I’m very comfortable in my bedroom. I have a large bed with plenty of room for both my 6’1″ 200lb body and my laptop. Distractions are few and far between living on a quiet street surrounded by trees which muffle most sounds emanating from the nearby highway. Inside the house is equally quiet, as I live with my quiet, predictable parents. To get even more comfortable with my surroundings, I recently covered my plain white walls with images that excite and inspire me:

posters
I’ll write about my walls in this blog at some point, but for now you can read more in this Reddit post.

However, laying in bed in front of my laptop is the way I spent most of my time during my worst years. After spending so many years feeling like crap wasting time on my laptop while laying in bed, I’m now conditioned to do exactly that: feel like crap and waste time on my laptop whenever I’m laying in bed. I browse Reddit, check Facebook, and search YouTube. The only productive thing I regularly do while laying in bed is my daily moneymaking routine which usually consists of an hour’s worth of whichever marketing jobs are available for the day, earning me a few bucks.

It’s hard enough dragging my ass out of bed on days when I feel relatively fine, but if I’m behind on sleep or otherwise dealing with additional fatigue it can be a real challenge. I started becoming aware of the fact that I subconsciously look for any excuse to stay in bed a little longer, fooling myself into thinking I’m being productive. For example, I have a set of tools I developed to complete those aforementioned marketing jobs more quickly and efficiently – I’ve made buttons to copy-and-paste email addresses and social media links, take pictures of the screen, etc. If I think of a way to improve that program by adding a new feature or improving an existing one, I can stay in bed for another hour while I write some code.

My solution to the problem of my room is simple: get the hell out of it. Not only do I bring my laptop somewhere else, but I have a separate user account that I log into while using my laptop out in the world. This account looks like a fresh install so there are few desktop icons and no programs that start automatically to minimize distractions. I originally created this account to use when I do the Rick’s Music World open mic livestream each week. I wanted peace of mind knowing that I could leave my laptop unattended without my personal files being accessible. Over time, I realized that this account is also a great way to separate myself from my routine.

The library down the street has free WiFi and quiet rooms that can used for up to two hours per day. I’ve yet to explore any other options, but there are plenty: libraries in surrounding towns, restaurants like McDonald’s, Dunkin’ Donuts, local cafés, etc.

The only way I was able to write this blog entry was by getting myself out of my unproductive environment.

Adderall – The King of Prescription Stimulants

My life completely changed when I first started taking Adderall. For the first time in a while I had an abundance of energy and motivation. I thought I was cured.

Unfortunately, strong stimulants come with some side effects. The most obvious one is that it’s difficult to sleep. You don’t need as much sleep when you’re on drugs like Adderall – you can get 4-6 hours and wake up feeling ready to go, but after a few days of this it starts to creep up on you. Your muscles get more tense and a variety of ticks can develop which vary from person to person. Some rub their fingers together, some make facial twitches, and worst of all some grind their teeth together.

Tolerance develops very quickly with stimulants. I recall looking up a drugs experience site for people with Chronic Fatigue Syndrome, and all the reviews for Adderall were either “I just started taking it last week! It’s great! I’m cured!” or “I started taking it a year ago… it’s not working as well anymore. I’m tired and my brain is getting foggy again.”

Doctors prescribe Adderall for daily use, but in my experience, using it daily just makes all the negative effects listed above much worse. I learned this the hard way. I took it daily for many years and it helped me live somewhat of a “normal” life for a while. At the end though, I was sleep-deprived, my muscles constantly felt like they were on fire, and my fatigue/brain fog levels were getting pretty high again. I realized there was nothing to do but stop it, so I did. After a year of withdrawal (sleeping up to 15 hours a day, only getting out of bed to use the bathroom, only being capable of watching TV) I began cycling it.

Cycling helps reduce side effects and prevents tolerance. Some people take “Adderall vacations” on the weekends. I take it 2-5 times a week depending on how much I need to get done.

Adderall is fairly easy to get prescribed from a psychiatrist. It’s cheap for insurance companies, it’s their go-to stimulant drug. In fact if you try to get a perscription for a wakefulness-promoting agent like Modafinil, they’ll refuse to cover it and say “Why not just take Adderall instead?”

I’ve seen some members of the CFS community say they don’t like stimulants due to the side-effects and crash. While it’s true that there are some uncomfortable side-effects like muscle stiffness, ticks, and insomnia, it’s done more for me than I ever could have imagined.