CFS – Shaking Off the Chains

What’s Good in 2021?

This started out as a brief post on the blog’s Facebook page, but I ended up writing way too much (Me? Write too much? Shocking!). So this has the writing style that I use in online chats more than the way I like cleaning up proper blog posts, but hey – how often do I post at all lately?

The past year has been definitely weird and for many, terrible. I’ve been fortunate. Here are some things that are better for me in Feb 2021 than in 2020:

Productivity: My online business has been developing much faster, both in knowledge and practice. I only get more efficient as time goes on (often I have no choice!). I’m more organized than ever before, I’ve got shelves, drawers, labels. I’m selling a much wider variety of items, trying to be careful not to rely on any one item – or one marketplace. My programming skills have also developed to allow for better automation.

Socially: Like everyone else, there are things I miss about social gatherings of course. But COVID has forced the world around me to find methods of communication that are more compatible with my shittier days. I don’t have to risk compromising the week’s energy quota to spend time with friends. More importantly though, some friends have told me that I provided some happy moments during unhappy times. It’s been a very digital year, so I thought people would appreciate getting something physical in their mailboxes. I would know, trading mail with bands did the same for me in my teens.

Hobbies: I didn’t realize how burnt out I was with certain things until COVID forced me to take a break. The main thing is music, I didn’t touch any instruments for a solid 7 months and didn’t miss it. I started doing open mics around August 2015 and continued pretty much weekly until the end. I did slow down towards the end, but I went a solid 3 years going balls to the wall every week. I really did everything I could with it. Combine that with a few projects that turned into headaches due to people being unreliable and I needed time away. I’ve recovered a bit, but even now.. basically I’ve figured out what my thing is, and that’s getting reactions out of people. It doesn’t matter if I do that with music, comedy, or witty banter – I need to switch things up sometimes. I am enjoying the hell out of listening to music again though, that won’t change.

Health: Physically I’m worse off than I was a year ago, no question about it. That’s to be expected when you stop being active and go back to being a bed potato, though. That’ll sort itself out though, and it was necessary to learn some important things and for perspective. I wasn’t realizing how much certain things were taking out of me until I didn’t have to do them anymore. For example, running the video at the open mic earned me 3-4h of pay. It’s not that simple for me though. I might be on the job for 4h but the amount of energy drained out of me could be much more. I never knew how I’d be feeling come Thursday evening, either. Some weeks I showed up feeling social and enthusiastic, but many weeks it was like carrying a boulder up a staircase. It’s why finding work with flexible hours is so important.

I am about to make some important improvements to my health in the physical sense, and these are things that’ll be much easier to get done with the world still on hold. Depending on what’s involved, figuring out the right ways to raise the bar may make me feel worse off before turning for the better or may require me to spend as much time as possible resting up. Unlike during my experimentations in 2015-2018 where I had to try and juggle the role of mad scientist, experimental subject, and fully-functioning human being, this time I can just focus on the task at hand.

I guess in the end this turned out to be a lot of words just to tell you what you already knew – I only move in one direction, and move at full blast.

Besides… even if I made no further progress, I’d still be looking forward to tomorrow.

Because I get better looking every day.

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!”

Push It To The L- No… Push It PAST The Limit

When you hit the medical books to see what the world’s geniuses have to say about ME/CFS, you won’t find any treatments. You only get a few mere suggestions to work with, such as “don’t push yourself.” This is due to the trademark CFS symptom of PEM or Post-Exertional Malaise.

I was going to copy/paste the medical definition here but it’s a convoluted way of saying “physical activity makes you feel like shit.” In fact, when I first started putting myself out there I’d often feel like I had the flu for a couple weeks. Adding Zinc to my daily regimen helped a lot. Some with CFS benefit from immune-boosters like Zinc, while others respond better to immunosuppressants. It’s what makes this all so challenging.

However, I’ve always felt that it should be reworded. You need to push yourself once in a while because things can change, sometimes there are factors at play that we can’t necessarily see. At some point I realized I was still playing by the rules of life as of 10 years back, things were different now… so I learned to push myself once in a while to see what happened.

I heard a quote referring to Capitalism years ago that… actually I don’t remember the quote, but it basically warned about the promises of endless growth.

As I’m now 4/5 years into my revival I look back and think of all the times I pushed myself and realized I could do a little more than I realized. Sometimes it just resulted in my ass being kicked, but that was nothing new!

The blessing – and curse – of similar chronic illnesses is that they don’t kill you. In fact some like CFS won’t even harm you. You just feel shitty for decades.

It’s scary at first when your heart’s racing, you’re sweating, puking, and look like you immediately need an ambulance ride (actually better call an Uber) to the hospital, but once you can lay down you’re good.

Not this time.

roo — I couldn’t find the sign I wanted, this will have to do.

Most of you only see me at my best, either in person as I’m out in the world or through the always-accurate lens of Facebook. Well, I know this might be a shock to you, but a lot of sleeping and resting in bed takes place in-between to make those things possible. I need to plan each week to ensure that my obligations occur when I’m at my best.

As I was resting up to plan out 3/10-3/15, I realized I had a lot to do but figured it out: I should have just enough energy to enjoy band practice 30-minutes away at 5pm, then get home alive. It was going to be a tough week, maybe it’d end in a little nausea but that’s fine (hell, I even wrote a guide).

Saturday

Band practice gets canceled at the last moment, postponed until the day after. Due to a miscommunication I thought it’d be the same time, 5pm. Come late night I’m showing signs of exhaustion – feeling hot, sweaty, nauseous – as is usual for the end of a busy week. I decide to push myself through one more day.

Sunday

I had already taken my day meds by the time I noticed a message waiting for me asking if “I was up to practice.” I interpreted that as “feeling up to it” not as in “awake.” Turns out it was the latter.

It’s hard for people that haven’t experienced the effects of strong stimulants to understand that once that first dose starts hitting your brain, there’s no “going to bed” or “shutting your eyes.” You can try your best but you’re just going to lay there bored as hell.

The day started rough but once things started moving I was getting along fine, even put the new gear I received earlier in the week to a humble Dunkin Donuts/Gas Station trip since I didn’t get to show off at band practice. I was eccentric, but when aren’t I? It’s why I love being in front of a crowd, it’s cathartic.

But something was wrong.

A friend that grew up in Maine told me despite seeing these signs everywhere, she never saw a single moose.

As the day went on I noticed myself being frustrated trying to read my computer screen. I have no issues seeing up close, the only thing I have trouble with are menus in fast food restaurants for example (got checked out and I’m fine, just aging). Blurry vision isn’t a part of my usual end-of-week symptoms so I thought this was strange.

About 10pm was when I started having serious trouble functioning.

I was becoming incresingly uncomfortable so I thought I’d fire up the ol’ Dreamcast but quickly realized I wasn’t going to be capable of getting that done. By this point I was also hot/sweaty but which isn’t unsual, but looking back I was unusually sweaty.

11pm I wake up to my dad in my doorway freaking out. I tried to give him the same speech I give friends when they become alarmed: “I’m fine, this happens just nobody sees it.” I can understand why that sight would be alarming regardless, so I tried my best to shit my shit together and keep quiet.

What really made me realize how fucked up I was though, the last Adderall I took was just a couple hours prior. Like I said above, that stuff carries with it a good 24-36h of wakefulness. If I’m passing out/falling asleep just a couple hours after my last dose, my body’s seriously had enough.

But it gets worse (or better if any enemies are reading this)

I am suddenly awoken by hitting the floor behind my bed very hard. The head of my bed should be against the wall but can slide on the hardwood floor. I must’ve leaned against the wall in my sleep, pushing it forwards. I knock over a 2l jug of water all over the floor.

Again… I felt bad for alarming people and tried my best to quietly get some sleep.

Monday

I go down and grab a yogurt as soon as I wake up simply out of habit. It was 11am and typically when I wake up that early I plan to be busy. But my mom was asking questions and I noticed I was having trouble answering, I was repeating myself a lot. Furthermore, my appearance was even more alarming.

Sometimes at the end of the week I’ll wake up with snot all over my pillow/bed, which I thought was the case until I looked in the bathroom mirror. There was black stuff all over my face/beard. What the hell was that stuff? I didn’t think it was possible that I had puked because I had nothing to eat that night but later it wasn’t food, it was the only thing in my stomach that evening – Kratom.

I was still twitchy and uncomfortable until the wakeful effects of the prior day’s Adderall fully wore off, but it was over.

What Now?

I try to learn from my mistakes and not repeat them, so:

If I’m nauseous and need a painkiller, I’ll take prescription Tylenol-4 tablets I have on hand. Kratom’s less harsh on my stomach, but most tablets will dissolve within 30 minutes of swallowing. A single dose of Kratom is a shitload of powdered plant matter.
- I’ve had the bad habit of eating right before bed for about half my life. That’s not changing yet, but I don’t eat when I’m exhausted.
I now know that blurred vision is a fucking huge warning sign. If it happens I need to get home, put my shit away, and crawl in bed. Even if I’m not ready for sleep, I won’t be capable of moving much longer.
Do some further reading on related topic (things like puking in my sleep are foreign to me).

I get that it’s a parent’s job to worry but I hate adding anything unnecessary to it. I at least know myself enough to be certain to learn from this. Others will still be concerned.

But when you’re going this hard against the grain there’s bound to be a couple speedbumps along the way.

I may wish to hire a proofreader/editor if it can be done affordably. Get in touch if you have any ideas.

I’ll type all day and night but editing is tough. My mind’s moving too fast to pump the brakes and have no energy left when I’m done.

I need someone to:

Trim the fat. For anything important, I type my first draft then edit it down into something more readable. I overexplain and include more info than actually required.
Check missing or substituted words. My typing accuracy is very high, so I’ll feel myself and notice when I make a typo. I end up doing shit like switching “me” and “my” or completely unrelated words.
Provide general feedback.

I’ve been meaning for ages to re-organize the blog and write a few “foundation” posts. My story’s so complicated that things often require prior knowledge, I always feel like I need to overexplain. Instead, I can just say “if you haven’t yet, read more here: [link]”

Get in touch: adamlsotc@gmail.com

-Adam

NJPW NYC & Insomnia 9/28-9/30

See those dates? I’ve been awake this entire time.

I talk a lot about the fun experiences I’ve been having as it’s a still big deal for me, but sometimes these trips come at a price which is important to understand. This (amazing) trip’s price was what will be 40 hours without sleep.

Those that haven’t taken stimulants can’t relate to this. Why not just close my eyes? It doesn’t work like that. It’s not until ~36h from the last dose that the “wakefulness” will wear off and start to fall asleep. You hear about meth heads staying awake for a week at a time or whatever, so whats a couple days? I’m dosing to take as little as possible in order to function, they’re taking as much as possible without dying. It’s enough to keep me awake, not enough to make me content staring at the wall for a week. As soon as a few hours have passed I’m strapped into another 30h that suuuuuck.

The good news? This used to happen every couple of weeks, but now it’s been years since I went through this. I made a mistake packing and didn’t have what I needed, a mistake I won’t repeat.

Time goes on, I discover new treatments and behaviors, recognize patterns, tackle symptoms. For example, a few years ago this type of insomnia came with fairly severe muscle pain… but now I’ve got my pain quite under control. Discomfort? Hell yeah, I can’t wait until this is over. But for now, it serves as a reminder of progress. This sucks, but I used to go through much worse so I’ll be good. Plus… there are things to look forward to now.

MVIMG_20190928_191129 — It was all worth it for this view.

My point: the risk of paying the price is absolutely worth it. I made some great memories. But it’s important to know that I don’t post pictures of myself shaking with a brains-shaped jello mold nearby in case I need something to puke in. That’s part of the story too.

If the Rock & Roll Express can dive out of the ring at 63-years-old for 3 nights in a row, I’ll be fine.

Top 5 Experiences of 2019

I’ve really come to appreciate the value of making memories and having experiences over the past few years. My policy is if I have the opportunity to do something, I always do it. Maybe it’ll be physically challenging at times but in the long run, the brain emphasizes good memories and de-emphasizes bad ones. If I attend a kickass concert I won’t remember my back hurting when I reflect later on, I’ll just remember the fun I had. With that in mind, I’ve gone absolutely nuts this year – and we’re only 8 months in so far.

#1: G1 Supercard – Madison Square Garden – New York City, NY – April 6, 2019

I decided that I was going to Wrestlemania and was in the process of putting the trip together when I noticed that there was going to be a big show going down the night before. Non-fans might wonder what the point is when I’d be going to whats basically the Super Bowl of wrestling the next night. It’s a different style. WWE is “sports-entertainment,” glitz and glamour, characters and gimmicks. This show was put on by a joint effort of Ring of Honor and New Japan Pro Wrestling, known for more of an athletic, hard-hitting, high-flying form of wrestling… and wow, did it live up to that description.

Ring of Honor has been around since the early 2000s and is basically the first big step on the way to the top. Many of the guys in WWE right now were in ROH 10-15 years ago. NJPW has been around since 1972 and is the biggest promotion in Japan. Slowly with ROH’s help they’ve been going global putting on shows all over the world and releasing content catering to an English-speaking audience.

I’ve never watched much ROH but have always been aware of them. I started watching NJPW’s biggest shows over the past couple years and have always liked what I saw. Again, their hard-hitting athletic style keeps you on the edge of your seat never knowing when the match might end. What I love the most about NJPW though are the entrances. The dimly-lit arenas contrast with the laser lights and hit my brain just right. I never thought I’d get to experience that in person without going to Japan! Take a look for yourself.

This was a historic show because MSG has been WWE’s home turf since at least the 50’s. There have been disagreements lately about royalty fees for taping shows there, so WWE backed out of their contract and ROH/NJPW swooped in, putting on the first non-WWE wrestling event.

Favorite moment: Bandido picks up both of his opponents on the top rope before hitting an amazing backflip slam.

#2: J-Sin Trioxin Tribute – Debonair Music Hall – Teaneck, NJ – June 30, 2019

Back in 2003, I was trying to get involved with horror punk bands and labels in any way possible. I’d send letters with a few bucks in the envelope to labels asking them to send back catalogs. I’d offer to make websites, design flyers, anything. I didn’t actually know how to do any of that stuff, but I figured it out on the fly. One day I saw that a big horror punk show was going down in Baltimore, MA that summer called Ghoul’s Night Out Fest 3.

In 2003 I had been through the wringer between all these sudden, severe health problems, losing touch with friends because I could no longer go to school, a brief stay in a psych hospital… so I figured this would be a good time to ask my parents for a favor. They agreed, found some stuff they wanted to do in that area, and off we went. There I was able to finally meet in person these bands that I had been in contact with over the internet. J-Sin Trioxin had just started playing bass for Blitzkid, one of my favorite bands in the horror scene at this time.

Sadly, J-Sin died last year at the age of 39. This show was to celebrate what would have been his 40th birthday. Members of his family were there including his mother who was brought to tears when she saw how many lives he touched.

As I was getting into horror punk, I read that the Misfits had a singer I’d never heard of named Myke Hideous. He wasn’t with them long, just filled in on a few tours. I explored his discography and liked everything I heard, he has a very unique sound. Once I read his autobiography, I really started liking the guy. He too had health problems throughout his life, dealing with cancer and the effects of its treatments. At this point in my life I felt very isolated. I was very sick yet being treated like an asshole as ME/CFS was even less understood then than it is now. Myke was the first person I identified with who was doing the types of things I wanted to do.

I had been in contact with Myke in recent years through Facebook. He quit the music scene many years ago, preferring to leave the bullshit behind. Pretty much every shocking reunion has happened by now, but I thought Myke was truly done. When I saw him post about a reunion show, I bought a ticket immediately.

I’ve never cared about autographs but I thought it’d be cool for Myke to sign my straight jacket. He was the first musician I saw use one as part of a performance, even before I started getting into Alice Cooper.

Favorite moment: Being able to stand front row center, something I never thought I’d be able to do at a concert, for a musician I never thought I’d be able to see.

#3: Wrestlemania 35 – MetLife Stadium – East Rutherford, NJ – April 7, 2019

My two main goals for 2018 were to get into better shape through gradual exercise and to make/save more money. I had a trip late in mind for late that year that I knew may or may not work out. Turns out it didn’t, so I needed to find something big to do with the money I’d saved up. I saw that Wrestlemania was going to be within driving distance and I was off to the races.

Since WCW died in 2001, WWE hasn’t had any real competition. The shows started really suffering as a result, especially over the past few years. Each show felt more like a commercial for their brands and the network. I started watching less and less. However, I wasn’t going to pass up an opportunity to go to Wrestlemania!

The main theme of the show was that the fans were pulling for certain wrestlers that had put in a lot of work over the years but never got their just due. Everybody wanted to see Kofi Kingston defeat Daniel Bryan for the World Championship, and for Becky Lynch to win the Women’s Championship. The crowd got their wish and the place erupted into a sea of cheers.

Here’s Joan Jett playing Ronda Rousey to the ring in the main event.

Favorite moment: The overall atmosphere, the sights and sounds, fireworks… Wrestlemania!

#4: Niagara Falls / Buffalo Trip – August 3-5, 2019

My dad and I wanted to go somewhere over the summer but couldn’t decide what to do. There were too many variables. Maybe we’d meet up with some of the Missouri family somewhere, maybe my brother would be joining us, maybe we’d go to Philly, Gettysburg, we didn’t know.

I got my passport last year for a trip that didn’t pan out – they wanted me to send in extra stuff to confirm my identity and the process took too long for the trip in mind… perhaps the fact that at that point I’d never filed taxes was the reason why. In any event, I got my passport and I wanted to use it.

I knew my dad was going to be taking that week off, so I sat myself down and proposed a trip exploring the area. Originally I included Toronto in the trip, but the more I read about Buffalo/Niagara Falls area, the more I realized there would be plenty to do there alone. Luckily a friend of mine sent me a list of things to do since she has spent a lot of time in that area, which helped me put a map together.

As a bonus, after getting back home we took a day trip with my mom to Hull, MA. Hull’s been on my radar for years for a secluded, concrete military fort there.

Favorite moment: Maid of the Mist boat ride under the falls.

#5: Bit Brigade – PAX East / Great Scott – Boston, MA / Allston, MA – March 30, 2019 / August 7, 2019

This was the third year in a row that I attended PAX East, a video game convention in Boston. Since you have to be on your feet the whole day it can be tough. The first year I was only there a few hours. This time, I was there all day.

As the day was coming to a close I heard that a concert would be taking place, so I got in line. I’ve always been a fan of old school video game music. I’ve played some songs on guitar, but my favorite thing to do is play drums over medleys of old video game tunes. There are a lot of video game cover bands out there but most overdo it with modern metal components like double bass drumming and pinch harmonics which isn’t my style. My favorite video game band has always been The Minibosses that play more of a straight rock style. As soon as Bit Brigade started playing I noticed that they sound almost identical to The Minibosses, but with a bonus: they also have somebody speed running the game on a big screen while they play the soundtrack!

Unfortunately, I had to leave halfway through their set at PAX so I could catch the last train back home. I’ve kept them on my radar since then and luckily they came back to do a show on August 7th. I wasn’t sure if I was going to go or not because I had just finished that tiring road trip, plus I spent the early hours of the day in Hull. I eventually decided that yes, I was going to go. I enjoyed the hell out of it.

Favorite moment: Contra, one of my favorites that I grew up with. Can you recite the Konami Code?

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.

What Sick People Are Sick of Hearing (You’re Probably Guilty of It)

I want to talk about something most people don’t think about and it’s something most people are guilty of without realizing it. If you know anyone who is sick – either chronically or temporarily – it’s something you’ll want to read.

I still stick around in some online chats related to the game I used to play/moderate and have developed and maintained friendships from people around the world. I began talking to one girl shortly before she was diagnosed with cancer. She’s a young girl in her early 20s, and it sucks to have to go through something like that especially when you’re young. She knows my health situation and that I find all health and illness topics interesting, so I told her to keep me up to date with the experience. We spoke off and on, she told me about all the shitty things she had to deal with – physical discomfort and the mental challenges that go along with some of the procedures… the cancer’s effect, the drug side-effects, uncomfortable preparation for exams and operations, etc. After talking for several weeks she thanked me. She told me that she spoke to many people about her situation, friends and family, but talking to me was so refreshing. It’s not because of something I did, but rather something I didn’t do: I didn’t tell her “You’re so strong, you’ll get through this!” “Keep fighting, we’re all behind you!” or anything like that. I listened and replied in a very matter-of-fact manner about the realities of dealing with such a thing: it sucks. I didn’t insist the future was bright, because when you’re going through such an ordeal you’re concerned with the here and now. She told me that my reaction was so refreshing because everyone just kept telling her to get through it and fight hard. On top of her existing pain and discomfort, comments like this also made her feel like she was letting people down by not being stronger throughout the ordeal. I explained to her that I reacted this way because I had gone through the same thing myself many times over for as long as I’ve been sick. When you’re sick or otherwise uncomfortable or in pain, people feel like they need to do something about it. In my experience, that means that they do one of two things: The worst of the two is they’ll offer stupid advice, suggesting you try something that either would have no effect or something that you’ve obviously tried when the problem first started. To give an example of each, one person suggested I try chicken soup to cure my ME/CFS symptoms, and another suggested that I try getting more rest. The other less ridiculous reaction people have is to offer verbal support: things like “You can do it! We all believe in you! You’re so strong, you can beat this!” Unless you’re the only person they’ve ever spoken to, they’ve heard this dozens of times already ad nauseum.

Often when somebody talks about the issues they’re having they just want somebody to listen and understand the things they’re going through. Personally, when I bring up the fact that one or many of my symptoms are really bothering me, all I want is for somebody to know that it sucks. That’s all I need. The pain or discomfort will pass, I already know what I can do (if anything) to help, but for now I just want someone to understand what I’m going through.

Sometimes I feel obligated to let people know that I’m not feeling well because I can tell that the discomfort is affecting my behavior. It hasn’t happened as much in recent years, but especially during my teens when my illness was just starting to take off I would frequently have people misread my body language. People would ask me why I was mad or sad when in fact I was just feeling sick. After so many years of this, I learned to explain myself before there was a chance for people to make any assumptions.

If you’re reading this and have been guilty of the things I mentioned in this post, don’t worry about it, most people are. You don’t need to apologize to anybody or even feel bad about it. It’s just one of those things most people haven’t realized or ever thought about. Just keep it in mind for the future and you’ve done your part.

The Absurdity of Healtchare

I learned a bit about how ridiculous the healthcare system is recently.

I had been taking Adderall just 2 or 3 times a week due to the side effects, so I was looking for something else to take during the other days. After some research I decided to Nuvigil (Armodafinil) a “wakefulness-promoting agent.” Once the patent of Provigil (Modafinil) expired, the company created Nuvigil to continue their profits. However, I had been on Provigil years earlier and read that Nuvigil is similar yet different in ways that made me want to give it a shot.

I asked my primary doctor which kind of doctor would prescribe it, and he told me neurology deals with that. I went on my insurance companies website, called some neurologists and asked if they prescribed Nuvigil. One did, and I set up an appointment. We met, I explained to him my situation, and he told me that I’m a great candidate for Nuvigil. Excellent! I didn’t realize it would be that easy. “There’s just one problem,” he says. “Insurance won’t cover it if I prescribe it, so call your psychiatrist or rheumatologist and I’ll guide them through prescribing it.” I’d never heard that one before, but I was hoping it would be an easy task.

I called my rheumatologist first since the neurologist claimed he knew the guy. My rheumatologist calls back and says “Sorry, but it would be better if you ask your psychiatrist.” Then, my psychiatrist explains to me that it’s very difficult to fight with the insurance companies to get them to prescribe a drug like this. Why? Well, they will say “Why not just take Adderall every day?” because it’s cheaper. They might cover if it I claimed Adderall didn’t work for me and stopped taking it, but I didn’t need a replacement – just something else I could take during the rest of the week. Insurance’s option for me is to either take Adderall every day or not at all, and neither of those options work.

This let me know that even if you find a doctor willing to prescribe you a drug, it doesn’t mean the insurance companies are going to go for it. It’s just yet another hurdle in the path of getting better. This situation was just one of many that opened my eyes to the fact that the healthcare system isn’t designed to make sure whatever the patient needs to feel better is done, no. It’s designed to make a profit, like everything else.

So what did I do? I kept looking, and discovered there is a legal alternative called Adrafinil that can be purchased without a prescription. Adrafinil converts to Modafinil in the body.

This entire situation, despite being a huge hassle and a game of hot potato with my doctors, taught me some valuable lessons about how to navigate our flawed healthcare system.

Explaining CFS to the Ignorant

We’ve all encountered some ignorant idiots in our time. Here are some situations I’ve encountered:

I told my primary doctor that I had been seeing for a year that I was going to apply for disability. His response? “Why?”
School teachers that tell you that they’re offended when you rest your head on the desk during class, how disrespectful.
Parents that think you’re just being difficult and don’t want to get up and go to school.
Randoms on the street that say “Chronic Fatigue Syndrome? Oh, I have that too! I’m so tired after working my 8 hour shift!”
Fatigue, so like what, you just get tired sometimes? Get some sleep and you’ll be fine.

We want them to understand how we’re feeling, but how? After years of dealing with this, I’ve learned a few things. You need to compare the feeling to something they are familiar with. When I first got the CFS diagnosis, I looked at some books and what I found was very depressing quote. I’ve since used it to my advantage to get others to understand me, however.

“CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

By comparing the feeling of living with CFS to that late-stage AIDS, someone undergoing chemotherapy, it helps garner some understanding. People as a whole have a lot of sympathy for those dying of cancer and AIDS – many have had a friend of family member stricken with these ailments.

You can find more descriptive quotes here that really paint the picture of what life with CFS is like: https://thoughtsaboutme.com/quotes/

Chronic Fatigue Syndrome – What is it?

If you’re reading this, you probably already have a decent idea of what Chronic Fatigue Syndrome is, or you’re living with it every day… but I can’t have a CFS blog without a post about CFS, right?

Chronic Fatigue Syndrome is a very mysterious illness characterized by extreme fatigue and just about every unpleasant symptom you can think of – muscle pain, abdominal pain, headaches, sore throat, insomnia, etc. CFS is not an illness with a known cause, but rather a name given to a set of unexplained symptoms. After being tested for everything else that could possible explain the symptoms (AIDS, Lyme Disease, Lupus, etc) the CFS name is given.

In addition to this already giant burden, CFS sufferers have to deal with the stigma attached to the illness. Since these symptoms are unexplained and cannot be measured, some people (and even some doctors) doubt that his is a real condition “it’s all in your head.” These symptoms are not psychosomatic and it’s very offensive to be told these symptoms are imagined. It implies that the sufferer has some amount of control over his or her illness and chooses to keep suffering. Over the years I’ve learned some techniques to educate the ignorant.

Treatment varies from person to person as there is no common treatment. Personally, I disagree with a lot of the treatment suggestions out there which is partly why I’m writing this. One common suggestion you’ll see is to not push yourself. If never pushed myself, I wouldn’t know what I’m capable of and I wouldn’t have been able to experience my amazing trip to Maine. It’s smart to not go beyond your limits, but you could constantly be challenging your limits. Situations change over time, and you might be capable of something you weren’t last year. You’ll never know if you don’t try.

At first glance, CFS is an illness with no happy endings… but it CAN be done. It’s up to you to take control of our life.

How I Finally Got Better

It was January of 2014, and something needed to change. I had been taking Adderall every day many years, and by now, tolerance had diminished all of its positive effects. Taking it only prevented withdrawal. I felt a constant burning in my shoulders, I wasn’t sleeping well, and I had no energy. I needed to do something, but I wasn’t sure what. Adderall was the only drug that ever had a significant impact on me and without it I wouldn’t have been able to graduate college or have a life outside of my bed at all. The only way it was ever going to work again was if I took a long break from it to reset my tolerance, so that’s what I did.

The next year was about what you would expect from amphetamine withdrawal. I would sleep for 12+ hours a day, quickly find something to eat and lay on the couch for a few hours watching TV. I’d then go to bed, and restart this process every day for nearly a year. I had lost contact with most of my friends a couple of years earlier when things started getting bad, and during this time I completely dropped off the map. This was a very rough period and was the closest I came to losing mind since I had in my teens. When my symptoms first started in my early teens, between the sudden constant pain that only worsened and the loss of all my friends due to the fact that I couldn’t go to school anymore, I lost it and had to spend some time in a psych hospital. I had developed a strong mind capable of processing all of these issues since then, but the isolation this year almost pushed me over the edge.

When I felt like I had been off the drug for a sufficient amount of time, I decided to start taking it again. The whole reason why I was in this mess in the first place was because I took it every day, so I decided to cycle it. I would only take it a couple of days a week. It was amazing. I hadn’t felt energy like this since I started taking it in the first place as a teenager. It allowed me to function a couple of days a week, which at the time was amazing. I managed to pass a some college classes (one per semester) during this cycle. I was very fortunate to have these two days, however I quickly realized I wanted more.

I started using my two days of brain power to make use of the internet and research medications I hadn’t heard of before. I also learned a lot about how the brain works so I could tell which drugs might be the most beneficial to me, how to take them safely, and how to avoid tolerance. I had seen all the best doctors in the world for years and they couldn’t figure out how to help me at all. I figured it was worth a shot to try it on my own.

I never had much luck with rheumatologists before. Much like other doctors I saw, they would run their tests, find nothing wrong, try a couple of meds, and give up. In my experience if you go to a rheumatologists complaining of muscle pain, they will try you on Neurontin and Lyrica and give up. I read about a drug called Baclofen and brought it up to my doctor. He had heard of it, but he needed to get his tablet out and do his own research to learn how to prescribe it. I thought “He needs load up Wikipedia to learn about this drug?” Unfortunately, the maximum he was willing to prescribe was only about 1/3 of the dose I needed. High-dose Baclofen has a variety of benefits, and studies exist showing that these doses are safe and without side effects. In France, they use high doses to treat alcoholism with great success. Baclofen helped lessen some of the effects of Adderall, so I now had a winning combination to be even more productive on those two days.

I had been on Neurontin previously without success. I was taking it on my Adderall days to try and lessen my pain, but it has little effect. I thought “Why don’t I try it on my tired days and see what happens?”It is chemically similar to Baclofen, a medication I’d like to take daily but couldn’t get a high enough dose. I spoke to my psychiatrist about it and he wrote me a prescription. It was then that I realized I had been taking it all wrong before. I found if I take Neurontin the day after I take Adderall, I still have enough leftover dopamine floating around in my brain and when I throw the Neurontin on top of it, I’m able to keep my sharp brain for the rest of the day until I go to sleep. If I take Adderall 3 days a week and I take Neurontin the day after, that gives me 6 days a week where I can function instead of the previous 2-3.

I was still having pain, though. The various doctors I saw over the years were hesitant to give me any sort of painkiller despite my severe pain. For a couple of years I dealt with the pain by downing a pint of vodka a night, and that solution doesn’t last forever without causing some serious problems. I discovered kratom, a plant from Thailand. I read that it tickles the morphine receptors in your brain, yet it is safe and does not cause bad withdrawal. It is self-regulating since if you take too much it just upsets your stomach. It’s very popular in the chronic pain community as well as the opiate addict community since they use kratom to get off of more dangerous drugs like heroin. This all sounds too good to be true, why hadn’t I heard of this before? Well, it lived up to the hype. For the first time in my life, I had something I could take when the pain started getting too bad.

Now at my time of writing, my week looks like this – I am superman 3 times week, tired but very functional another 3 days, and totally incapacitated one day a week. It’s not all perfect – I still have ups and downs: I might have a couple weeks of insomnia every few months, a week here and there where my fatigue is very bad, some pain, immune system flareups that dry out my skin, etc… but I am enjoying life. I got my friends back, I can go on long trips without being uncomfortable the entire time, I can start and finish projects, I can do things and enjoy it.