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.
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:
I’ve only been out of the house/my room for a few hours total over the past ~3 weeks, but I’m finding many positives to the unique situation we’re living in.
About a week into it I started noticing that I had much more energy at my disposal. Even if I have plans on a given day that only take up a few hours, that can still eat up the entire day from the pre/post resting. While I obviously know doing stuff uses up energy, it’s different to experience it. So I’ve been far more productive at home.
My biggest focus has been my online shops which have been seeing way more action lately. I mostly sell indoor things like video games and there are a loooot of parents trying to get their kids to stay still/shut up right now. The extra time/energy makes it easier to keep up, but also has allowed me to diversify the products I sell and conduct more research. By the time this is over, I won’t just return to where I was before.
I’ve also been a LOT more neat and organized. If I’ve been out of the house, I usually just toss everything “wherever” when I get home so I can lay down. I have a general idea of where everything is in my head but still end up losing things. Every 6 months or so I’ll just spend the whole day cleaning/organizing and start the mess again. Lately, I’ve added some genuine organization to my room/storage. It’ll help streamline things in the long run and will be easier to keep tabs on when I’m running low and need to restock on something.
Hopefully in another week or so I’ll have caught up with the above things enough to focus on cranking out a bunch of blog posts. I’ve found a couple people willing to edit/proofread so I can just let my fingers do the talking.
I hope we all get through this ordeal safely… but afterwards, if we could all agree to cancel the entire world for a couple months every few years, it would really help me out.
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.
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).
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.
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.
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.
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.
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]”
I like to talk about things that I find interesting and many aspects of my life fit that qualification. As soon as I started talking about the decision to get a vasectomy, the first thing a lot of people thought to ask was: “Why?” Many were curious, a few even seemed judgmental. Well like most topics that some would consider “TMI” I am more than happy to tell about about my balls.
First, let me answer the question “why now?” At this point I’ve got myself in a position where I feel like I’m in control of my life. I have reasons to invest in my future because unlike my younger self, I’m looking forward to it.
While reading up on some medical topic online (I forget which) I read that vasectomies are sometimes covered by insurance. I figured that probably meant they’d cover it if you had some kind of genetic disease likely to pass on to your children or something. I had a physical coming up soon so I asked my doctor. He immediately said “Oh yeah they’ll cover it! I’ll have a urologist call you!” Damn, that was fast and easy. I guess we’re off to the races!
I swear you always have to fight to obtain the serious treatments you really need, but when it comes to dick pills or testicle procedures it’s a piece of cake…
No single one of these reasons was the deciding factor, but they all pointed me towards the same conclusion. Let’s start by getting the obvious out of the way.
Yes, the very reason why I started this blog. If you know me well enough to want to read this post, you’ve probably seen me explain it someplace or another. If you need a refresher that puts it in perspective, these quotes usually do the trick.
From about age 13 to 27 I missed out on a lot of stuff. These are often the ages of excitement, exploration, first-time experiences, and making mistakes. Meanwhile I was being poked, prodded, and penetrated (and not in the fun way my peers were). When I finally started making progress a few years ago I could get out and experience the world around me. I can’t overstate how tough things were during that time, but I don’t like to complain without following it up with a positive – and in this case, it’s the fact that things were so tough before that makes me appreciate everything I have now a lot more.
I’m doing better than ever. You only have to spend a couple minutes with me figure that out. But still, you only see my highlights – my Facebook posts, me out and about – and not all the rest and recovery in-between that’s required. I have to carefully schedule my week around my plans to ensure I have enough energy for everything. Each day I only have so many “prime” hours, and I completely miss out on two days per week from needing to cycle my meds.
Despite these limitations, I never thought I’d make progress like this. I have so many friends, I’m actually making some income, and I’m making memories. I am content.
Now, the future. I will be dealing with this for the rest of my life. I intend to continue my upward trend in figuring out how to make life work with my unique situation. That means taking care of myself is the priority.
Maintaining my health is a full time job. At the moment I’m dealing with the sudden retirement of my psych prescriber. When my last one retired a couple years ago the insurance company sent me a list of approved providers, severely outdated. I had to spend a week on the phone dealing with that before I made any progress.
It wouldn’t be fair to me, wouldn’t be fair for the mother, and wouldn’t be fair for the child. That kind of responsibility requires a lot of time and energy, energy I don’t have.
#2: My thoughts on parenthood have been consistent throughout my entire life
Some people are great around kids. You know the type of people I’m talking about, they’re very warm, expressive, constantly outputting positive energy. I’ve never been one of those people. I’m the guy with the deadpan expression telling jokes so dirty, they’d make Jerry Springer blush. I have a morbid sense of curiosity and feel like I’m running out of Wikipedia reading material when it comes to topics like humankind’s atrocities, the effects of nuclear radiation on the body, and unusual deaths. I decorate the back of my shirt with the image of myself vomiting blood into the shape of brains.
When around kids I feel awkward at best, and at worst they’re horribly annoying little monsters. I can’t tell you how many times someone has told me “I know you’re not big on kids Adam but once you see these kids you’ll change your mind.” Every time I left the situation even more sure of myself.
I used to be a miserable asshole that hated just about everything, I wanted to drag everything down with me. Now, I only spend my time on positive things and am finding positive things about many topics I was previously indifferent about. A few things have remained consistent throughout. This is one of them.
#3: Suppose my feelings change in 15 years… Consider how many kids are out there waiting to be adopted.
I know enough about how our brains work to know that time can change a lot of things. I think the odds are pretty low that this one will change given my situation and attitude, but I’ll entertain the idea. Think about this, though: I remember learning in school that there were 6 billion people in the world. Now there’s over 7.5 billion. That’s a lot of babies!
As time goes on, humankind has created all this amazing technology. You can video chat with someone on the other side of the world in realtime. You can catch a flight to anywhere in the world. It’s never been easier for humans to get togehter, and what do humans tend to do when they’re together?
We make it easier and easier to meet up and have sex and yet we’re still stuck in the stone age when it comes to sex (and drugs) education. For some reason, many people view harm reduction techniques as an endorsement. They get all pissed off when you teach their kids about sex, hand out condoms, or have a Planned Parenthood in town. People are still pushing abstinence-only education and it’s 2020! People are going to have sex whether you like it or not. Everybody seems to know at least one person that’s responsible for more children than they could possible provide for. A little sex education would go a long way.
#4: I’m taking control of my own body, not relying on the woman’s birth control
Over the years I’ve heard many of my female friends talk about the nasty side-effects that birth control methods have on them. Some are on the pill, some have an implant that slowly releases hormones, there are IUDs, and then there’s good ol’ condoms. Speaking of sex education, I’d never even heard of IUDs until a few years ago. Sure, there are people that use a form of birth control that they’re completely happy with, but for many it can be a real struggle.
I’ve been hearing about a supposedly soon-to-be-released male birth control pill for my entire life. Every few years there seems to be another news story promising it’ll hit the market soon. I don’t know how many rounds of testing these pills need to get FDA approval, but they sure are taking their sweet-ass time.
Men need more options for birth control so women don’t need carry the burden.
I’ve spent the past couple days typing/talking to people about this subject as I often need to do in order to settle my thoughts into something readable. I understand why so many people are curious about this type of thing, and feel I’m good at bringing these type of topics to light. This has been a wild week for sure, and typing this out a couple hours before I rest for a couple days has helped my tie everything together.
Within the next couple weeks I’m going to follow this up with a post detailing the procedure itself – the preparation, the procedure, and the followup. I was asked many different questions about the actual procedure that I’d like to answer, and I also want to share some things I learned myself. Some people even seem to be following along my experiences to help sort through their own feelings and make a decision on this topic.
Stay tuned for Part 2, where we’re gonna cut open some scrotum and go to town.
Get your shit together, Rhode Island. At most, Kratom can save someone’s life. At least, it can help someone live a more pain-free life. Personally, if I didn’t have Kratom I would’ve had to cut my last NYC trip short a day.
I’m happy for the cannabis enthusiasts and all their legal victories in recent years. If THC/CBD/etc improves your symptoms that’s great, it’s very safe. However, it’s not a miracle cure. There are no “one size fits all” cures. It happens to make my symptoms worse.
Recent cannabis legalization acts are not the result of drugs being evaluated the way they should, by their medical value, safety, etc. Decisions are still made due to financially motivations and ignorance. You don’t have to look further than the misinformation surrounding the recent vaping bans to see that.
Scott Gottlieb used to post all this bullshit on Twitter about how dangerous Kratom is, even stating that people inject it (nobody fucking injects Kratom, just a scare tactic). He blamed Kratom for the deaths of individuals that were found to have multiple drugs in their system – drugs which posed a much more likely explanation for their death.
Why is does that matter? Because Scott Gottlieb did this all while he was the HEAD OF THE FDA! Where does he work now? For Pfizer, an opioid-producing pharma company. Shocking!
You may not care about any of this shit right now, but mark my words – I’ve been telling my friends this for years: When I rant about things like Kratom, you may not a shit… but one day, the DEA/FDA/CDC is going to interfere with something you DO feel passionately about. Something that really helps you or a loved one. For many, that particular thing was vaping. What’s next? Anything they deem a threat to their profits.
After taking it daily for so many years, I had become completely tolerant to the drug and the amphetamines no longer provided the stimulation necessary to live my life. Nothing else had ever helped me, so I figured this was the only thing I could do. I didn’t know how long it would take to undo the tolerance, but figured I was in for at least 8 months of withdrawal.
2014 was a very dark year. Back when everything hit me at once as a teenager I ended up spending a couple weeks in a psych hospital, but since then I’ve had a grip on things and although I may have some depression or anxiety, I could always keep myself within the realm of rational thought. However, if you’ve ever read anything about the psychological effects of solitary confinement, you know that it quickly turns sane men crazy and crazy men well, crazier. I spent every day sleeping for 12-15 hours, only crawling out of bed for a single meal. I had grown apart from old friends by this point anyway, but not being able to get out of bed meant I was further isolated from the many online friends I had at the time.
In April, I received a large package in the mail for my birthday from a good friend that kept my going. I pushed through, and after many months of this I recognized that I had plateaued. It was time for me to dip my toe back into the waters of stimulants, very carefully. I started taking Adderall 2 days a week, giving me just enough time to get through a single college course.
By this time I had already achieved my Bachelors in Psychology, but wasn’t sure where to go from there. I realized I couldn’t work, so I figured all I could do to maintain some semblance of progress would be to continue going to school. My plan was to go for a Masters in Computer Science, but in order to be eligible to switch I had to take a couple computer courses in the interim. I signed up for Assembly Programming and was on my way.
As I was walking to class one day from the parking lot, I noticed something strange… I felt something. I noticed the colors all around me in a way I never had before. For my entire life those around me have been pointing out scenes in nature: snow, trees, leaves, etc. I’d look and sure, it looked nice, but I never understood why people made a big deal about it.
For the first time, I understood.
I guess it had been years since my brain’s dopamine receptors weren’t completely fried because I hadn’t felt anything like that in a long time. In fact, a big reason why I enjoyed getting shit-faced in my early 20s was because it allowed me to feel. I’d put headphones on and music would sound so good some nights it nearly brought me to tears… but that wasn’t sustainable. Alcohol would provide a few hours of comfort at the price of a day and a half of hangover. This was the beginning of me figuring out a healthier way to treat my symptoms.
Autumn 2014 was the beginning of me finding things to enjoy in life. Years ago, my girlfriend described me by saying I “openly dislike everything,” and she wasn’t wrong. I was miserable and wanted to drag everyone else down to my level. That’s no way to live, though. To this day I am chasing the experiences I enjoy and making up for lost time.
The leaves looked nice enough on this day but weren’t as striking as I imagined so I took some additional photos, first around my old neighborhood and then my current one.
Every time I think I’ve figured out all the ways my body can work against me, it always throws me a curveball.
I have photographs sitting in folders ready to go for more elaborate posts but I’ve been laser-focused on Halloween stuff this month, so they’ll happen in a bit. For now, here’s an impromptu post about number two.
I’ve never understood people that spend an hour in the bathroom. They read books, they play on their phone, they have entire experiences in there. Me? I’m there to conduct business and that’s it. In and out. Despite the fact that certain meds I use are known to cause constipation, I’ve always been locked and loaded and ready to go. In fact, in recent years I couldn’t have held back if I wanted to when nature calls.
Every week, it was the same story: I’d take my first Adderall dose after a couple days off to rest and give my brain a break. It was very obvious to me when it started kicking in. It wasn’t the alertness, it wasn’t the physical energy, it was a sudden need to get to the bathroom. This feeling was so desperate that I had to plan my life around it. In the early years of my “revival” I learned the hard way that waking up and leaving immediately was asking for trouble. I’d be driving to an allergy shot appointment a mere 10 minutes away when things started “kicking” in. I didn’t know if this place had a bathroom but I figured it out quickly – bottom floor. I became well-acquainted with this bathroom before learning to allow for enough time at home before taking matters on the road.
Over the past couple weeks, I don’t know what happened. Sure, my diet has been awful but it’s been awful for most of the year. At some point since getting j-j-j-jacked last year I thought I’d take a weekend off my healthier diet, well that weekend became several months. Actually this is great, it gives me an excuse to show off that pic of me at peak beefcake:
Back to present day (as long as I have this pic, people will assume I still look like this under my shirt), at first I was still having an easy time in the bathroom but the urge was striking me at hours I wasn’t used to. Then, it was taking me minutes… and effort… to get the job done. Tonight was the worst I’ve ever experienced. I spent 45 minutes in there earlier feeling like this thing was never going to resolve itself. Before you constipation pros start giving me tips, I tried everything: relaxing, pushing, leaning, bending, everything. I eventually made as much progress as I was going to but knew there was work left to be done. I downed a bottle of Magnesium Citrate I’ve had in a drawer from before I stopped taking Tylenol #4s. Those prescription painkillers would result in awful constipation and stomach pain every time. Kratom dulls the pain without any negative effects, maybe some mild constipation but nothing I couldn’t overcome. I didn’t know if I was ever going to need that bottle, but I’m glad that I did.
Hours later I felt confident enough to go back and finish the job. I hope things never get to this level again, and I’ll probably have to make some changes. This cannot continue.
I wish I had a clip to share, I re-watched the debut of Undercover Boss last week. I only ever watched that single episode when it debuted but it stuck with me. The boss of the Waste Management company went undercover as a new employee to work several entry-level jobs to see how things really were in his company. Among the people he interacted with was this guy Fred. Fred’s job was sucking the shit out of porta-potties with a huge vacuum attached to the truck. Yeah. Sounds terrible right? Fred had the boss smiling and laughing him while training him to do this. He had some great quotes, one was something like “I call it ‘The Battlefield of Poop. We’re soldiers. Sometimes you get wounded, you get a little splatter on you, but you gotta keep goin!” Well Fred, your words rang true for me tonight.
…that pic of me above looks even better surrounded by this shitty story.
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.
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.
(Note: I originally typed this up to be a Facebook post before deciding to post it here. Keep that in mind if anything’s worded strangely.)
I was 14 years old and had just been through the wringer. All of the ME/CFS symptoms started hitting me hard, one after another, quite severely. Doctors couldn’t figure out what was wrong and without a label for the illness, I was treated like some punk kid that just didn’t want to go to school. The physical discomfort, lack of sleep, and the way I was being treated messed me up and I need a distraction… FAST. At that time I didn’t use drugs, didn’t drink, wasn’t having sex. Hell, I hadn’t even discovered masturbation until years later! With no way to escape, I started doing anything that would take my mind off of things for even a minute which usually manifested itself via self-harm. I found it cathartic to take walks in the middle of the night and one night, I stole one of my brother’s Black & Mild cigars, a couple cigs, and tried them while on my walk. I liked it so I started smoking when I’d go to the mall every week, too. Before I knew it, I was hooked.
For the next ~15 years of my life, every day I awoke to the same dilemma: Where was I going to get the money to pay for today’s pack?
Smokers are very particular about their brand and I got myself hooked on expensive, brand name Marlboro 100s. I could find the $5 needed by picking up cans at Ted Williams’ Park (if someone recently threw a party there, jackpot!), grabbing loose change, or selling some of my CDs. However, MA started taxing cigs heavily and the price kept skyrocketing.
To those around me I became an annoyance at best and a burden, liar, or thief at worst. Usually people only resort to lying/stealing when they’re hooked on more expensive hard drugs like meth or heroin, but since I was too sick to work, I had to lie/steal to fund my nicotine addiction. I stole money from my parents’ stash, grabbed any loose change left unguarded at friends’ hoses, whatever it took. If my current pack was running out and I had no money, I’d try to space out my cig breaks but the anxiety just made me want to smoke even more… and those times when I did run out, I was completely miserable.
I didn’t realize it at the time but it turns out my addiction was extra strong because of my meds used to treat the fatigue/brain fog. Adderall is a mic of dextroamphetamine and levoamphetamine, and amphetamines flood the brain with dopamine making you want (NEED) to feed your addictions even more.
I hated dealing with the daily anxiety and being a dick to those around me but I was certain that I was going to keep smoking until I died. I tried Chantix and while it helped reduce my smoking, I was still heaving 1-3 cigs a day and couldn’t bring myself to stop completely. Nicotine gum didn’t help. Cold turkey was out of the question.
After yet ANOTHER tax hike brought the cost of a pack to $11, I realized I could no longer afford it and had to change something. I had 2 options: start rolling my own cigs or switch to vaping. Luckily, there are some startup costs with the former which I couldn’t afford. My friend Amanda had switched to vaping just a year or two prior and offered to send me an e-cig in the mail. She was a good friend in many regards, but I consider mailing me that e-cig the biggest favor she ever did for me. I didn’t switch immediately, but I’d use the e-cig to reduce the amount of cigs I was smoking. Plus, if I ran out of cigs, I knew I at least had the vape.
I decided I was going to make the switch for good. Like breaking any habit, it felt weird for some weeks but I got used to it. Not long after that, I couldn’t have smoked a cig if I wanted to without feeling sick. This was a step in the right direction but vaping had its own challenges, the biggest one being that there’s no “end” to a vape break unlike cigs have a physical end to them. As a result people end up vaping all day. I worried that this might make my nicotine addiction worse but hey, at least it was safer and cheaper.
I started vaping juice with 16mg of Nicotine since this was closest to what’s in a normal cig. Over time, I would buy juice with lower nicotine content – 16mg, then 12mg, 8mg, etc. I never noticed any difference. I knew from experiences with certain prescription drugs like Effexor that the hardest part was going to be taking that last step to 0mg. To ease into it I started by mixing 3mg juice with 0mg gradually until I hit 0mg. I vaped 0mg juice for a week and realized I had done it… I had weaned off nicotine!
Now all that was left to do was break the habit of bringing a stick to my mouth and puffing on it. I vaped 0mg juice for months. Then, while packing for a trip to my cousin’s wedding in Indianapolis, I decided to leave my e-cig behind. I didn’t miss it and I never looked back.
It also helped that I hated being seen vaping. Once I took a vape break outside of Rick’s and this kid comes up to me all excited “HEY BRO, WHAT KINDA MOD IS THAT MAN? SICK!” I was like “I don’t fucking know I’m just trying to quit smoking!” It’s funny, cigs are unhealthy and smell gross, but were considered cool because they were associated with rock/movie stars. On the other hand, vaping is relatively harmless, smells nice, but is very uncool due to who it’s associated with. Some people need to realize that blowing a big cloud doesn’t mean you have a big cock.
I’ve found when it comes to quitting smoking, everyone’s different. Chantix works for a lot of people and that’s a useful tool. Some people can’t quit gradually, they NEED to go cold turkey. Others, like me, are best off doing the vape+taper method.
I did a ton of research when I started vaping, much like I do when I research different meds. Long story short, there’s little if anything to worry about. The chemical causing popcorn lung used to be in certain dessert-flavored juices but once that became known, companies stopped selling those or using it. All the scary stories in the news of e-cigs exploding in pockets were due to those people using custom/modified batteries and didn’t understand what they were doing. The only cause for concern at all really is the nicotine. If someone new to vaping chooses to vape anything but 0mg juice, I’d consider that a stupid decision. Don’t believe the bullshit. Don’t believe “gut feelings.” Believe the facts, the science. The “vaping deaths” that occurred were all from the use of black market THC cartridges. Banning vaping completely because of that would be the equivalent of banning coffee because a few people took too many caffeine pills and had heart attacks.
I cannot overstate how much I appreciate being free of that fucking burden. On days that I feel shitty and find myself starting to bitch, there are a couple things I think of to put things in perspective and remind myself that things aren’t too bad:
#1: At least my balls don’t hurt.
#2: At least I’m not addicted to nicotine and smoking anymore.
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?
When someone loses a limb, they have to learn to walk with their new prosthetic. Similarly, when I started finding the right medications in 2015/2016, I had to learn how to go through life with my new brain.
If you’ve ever had any friends that show symptoms of mania (such as in bipolar disorder) then you know how unnerving their never-ending stream of thoughts can be. Excess dopamine in the brain can result in things like mania and schizophrenia, and that’s exactly how the stimulants I take work – they end up causing my brain to pump out a lot of dopamine. ME/CFS causes me to lack both physical and mental energy. Fortunately, the treatment provides both… unfortunately, they’re given in uneven amounts. Each dose grants me about 4 hours of physical energy and 24-36 hours of mental energy and wakefulness. As a result, at the end of the day I often lay in bed and type way too much. I’ll no longer have the energy to feel like doing anything beyond laying in bed, but my brain is still going at full speed and I end up typing a lot.
As I’ve explained before the first step I took to start figuring my issues out was giving my brain a year’s rest away from Adderall because it was the only medication that ever provided me with energy, but I had become too tolerant and it no longer worked. When I started using it again, it was working again I finally had some energy to get things done… but I had too much.
I had grown apart from my real life friends for many years but I had some online friends I had been close to during those years. Despite the mania, I at least knew to keep my crazy thoughts out of the public eye, so what did I do? I spammed my friends’ private messages – two friends in particular, Sher and Amanda. It wasn’t uncommon for me to leave them 100-300 messages over the course of the night, which they would wake up to. Amanda told me she had to start muting her phone before going to sleep because my messages would vibrate the phone until it fell off her bedside table. She didn’t mind, though. In fact, both of them were either extremely patient good friends or they found my rants interesting enough to keep read. Sher told me she would read my messages on the train on her way to school. Regardless, I had an outlet for my runaway thoughts and an audience to receive them.
I quickly noticed a problem, however, I’m not always a manic maniac. I started cycling my meds to avoid tolerance occuring again so I’d go from my brain working overtime at the peak of my med cycle to becoming a braindead zombie at the low point. I’d leave messages and ask questions that I wouldn’t feel like responding to or following up with by the time they responded. These two polar opposite versions of me struggled to form the collective unit you know as Adam. Zombie Adam hated dealing with the problems that Crazy Adam created and vice-versa.
Side note: any close friends of mine know that I use a couple slang terms to refer to my two mental states. If I’m all stimulated and manic I say that I’m “blasting,” and if I’m on the other end then I’m “crashing.” Blast and crash, that’s my life. At first I was very careful and only blasted 2-3 times per week but I eventually worked my way up to my current cycle which is typically 5 days of blast, 2 days of crash.
I realized I needed to set some rules if I was going to resemble a functional human being. If I knew that I was going to spend the next day or two crashing then I would have to avoid leaving any open-ended conversations because I wouldn’t feel like dealing with them when I woke up the next day. Early on it was difficult to stick to this because I felt like all my thoughts were very important and needed to be said. After all, it had been many years since I felt anything at all… I needed to express myself! After a couple years though, I felt like I got most of the important stuff out. Nowadays I mostly stick to this rule but occasionally still screw up and leave myself a mess to clean up on my rest days. Beyond that, instead of firing off messages directly to friends I instead type up my messages in Notepad and wait on them for a bit. If they’re still important to me later on then I’ll know they’re worth sending. I’ve also gravitated towards chats where I can type as much as I want without needing to follow up later. I’m using Discord less and less (every time you open it, you’re bombarded with notifications) in favor of IRC, where the conversations end as soon as I stop chatting.
This all allows me to handle the mania well enough. What else?
When I added high dose Baclofen to the cocktail, things got more interesting. After giving my brain a rest for a year, I had a couple college classes I needed to finish up. I’ll never forget walking to class from the parking lot during an autumn month and thinking that the leaves looked strange. They were… beautiful? My mom had been pointing out nature scenes to me for my entire life but I never understood what the big deal was. Yeah, the sky is pretty. So? This was different though… I felt it! As I exited my car and walked to the classroom, the surrounding autumn leaves filled me with a strange emotion I’d never felt before, or at least hadn’t felt in a long time. It was a positive emotion.
As time went on I started enjoying many other things. To put things in perspective, let me explain what I surrounded myself with during my worst years. I disliked anything new or unfamiliar, it took effort and brain power – which I didn’t have – to process and understand these things. As a result I stuck to what was familiar. There were many years where I listened to nothing but Black Sabbath. To vary it up, I joined a message board where people share recordings of live shows. I built up a collection of dozens of shows for every tour they did from 1970 to 1996. That was my way of keeping things familiar yet fresh, I guess. I watched the same shows on TV, I never left my familiar environment unless I had to, etc.
Now all of a sudden I’m listening to genres of music I never enjoyed before, I’m appreciating art like I never have before, I’m coming up with all these off-the-wall, creative ideas… it’s not just the fact that I was enjoying these things for the first time ever, it’s also the fact that I spent most of my life apart from these things. EVERYTHING was new to me! When I started travelling, even driving 45 minutes away was an adventure because I avoided even leaving my bed for so many years.
Sounds great right? Well, I had to learn to reel myself in so I didn’t seem too crazy in public. Of course I always noticed pretty girls before, but now they were absolutely breathtaking. I needed to either keep quiet or figure out how to give compliments in a way that didn’t come off like “HEY, I WANT TO FUCK YOUR BRAINS OUT WHILE WE LISTEN TO RAGTIME PIANO.” I also needed to always remember that although I might really enjoy something, it doesn’t mean my friends that aren’t on meds that flood their brain with happy chemicals will feel the same way. I can’t go around telling people “Hey, this song is amazing and you need to listen to it right now!” or “Hey, I’m going to drag you to a wrestling show with lots of people, bright lights, and loud music.” I always need to keep my previous mental state in mind so I don’t forget that a lot of people simply like to do what’s comfortable.
I started this journey in 2014 when I gave my brain a rest, then started finding the ideal meds for my brain in late 2015. It’s now halfway through 2019 as I write this and I still find myself making mistakes from time to time. I plan the rest the next couple of days because I’m driving to New Jersey for a Horror Punk show on Sunday. I’ve sent at least two messages to friends that I’ll have to deal with tomorrow. I say “at least” because there are always things I forgot that I did until they pop up later (edit: yep, discovered another as I was proofreading). Stimulants trick you into thinking everything is really important and at the time it is… however, I’m always only 24-36 hours away from nothing being important besides uninterrupted rest.
Lastly, fun fact – due to poor sleep last night, I am in a particularly manic state as I write this. It’s difficult to sit my ass down and focus on one thing long enough to come up with a well-written, organized blog entry. It’s much easier to spam an IRC channel in a loose, stream-of-consciousness manner. However, I’m going to try and remain consistent with my blog. I’d like for my thoughts to all be in one place rather than spread across 20 different private messages and chat rooms. We’ll see how long it lasts!
Seeing as it’s Pride Month, I’d like to explain how my health experiences made me sympathize with what the LGBT community goes through.
ME/CFS isn’t an illness like cancer where you’re treated like a brave warrior and hero regardless of how treatable, mild, or severe your form is. You get diagnosed by ruling everything else out that could explain the symptoms (AIDS, Lupus, Lyme Disease, etc). Since there’s no test to “prove” that you’re sick, the illness isn’t taken seriously and people don’t believe that you’re suffering. The situation is a little better now, but back when I got sick in the early 2000s it was awful. Doctors and teachers treated me like some asshole that just didn’t want to come to class, a hypochrondriac, a nut, or that my symptoms were psychosomatic due to some childhood abuse. Their comments got into the heads of my parents who suspected that maybe my symptoms were due to abusing drugs. I was given no help or half-assed help at best. Only occasionally would someone sympathize with me, but it would be someone like a nurse that couldn’t do much in their position.
My stomach pain was at its worst as I struggled to attend freshman year at Apponequet. I’d get snide comments about why I wasn’t eating and was so skinny, calling me anorexic, etc. I was never one to get into fights but a lot of shoving went down that year (I wasn’t going to put up with anyone’s shit on top of everything else). The Principal noticed that I tended to be a loner in the lunchroom so she took me aside and suggested I join the Diversity Coahlition (the newly-renamed Gay/Straight Alliance). I said “I’m sick, I’m not gay!” I’m willing to guess that was her go-to response to any outsider and offered that same half-assed help to any LGBT student trying to make sense of their situation.
As a straight white guy I’ll never know what it’s like to walk a mile in the shoes of a gay man. Also, I grew up in Massachusetts: one of the most tolerant states… so I REALLY don’t know what it’s like to be a gay man growing up in places like the midwest/southern USA, or at worst strict countries in the Middle East. However, I know what it’s like to be treated like shit for something that isn’t your fault and you have zero control over. Due to that, I’ve always felt a sort of kinship with any other groups that have had to deal with the same thing.
There’s one thing which Chronic Fatigue Syndrome causes that nobody ever talks about: messy rooms.
If I’m in my room, I’m in my bed. Getting up and out takes all of my effort so when I need to go somewhere, all I can do is make a beeline to the outside door. By the time I get back home from wherever I was, I’m out of energy and will do the least amount of things required of me before getting back in bed. If I went grocery shopping I’ll put the food away, but pretty much anything else I bring home ends up on the floor in my room with the understanding that it will be put into its proper place at a late date (but this date never comes).
It generally takes most of the day for me to fully “wake up.” There are things that bump me up to the next level of consciousness: the cumulative effects of each dose of my meds, socializing which gets my mind going, and generally going through my daily tasks. Sometimes I’ll be in the mood to start cleaning but by then it’s 2am and everyone else in the house is trying to sleep so I must be quiet. When I’ve finally had enough of the mess and start cleaning during daylight hours, the required motions of repeatedly bending over and lifting quickly do a number on me. It’s a similar feeling to shoveling snow.
Human beings naturally avoid activities that cause pain anyway, but surviving decades of discomfort will condition you even further. It’s not long after I start cleaning that the feelings of soreness, fatigue, shortness of breath, and sweating kick in. I’ve managed to recondition myself to get through many other of life’s tasks, but keeping my room clean remains a constant challenge.
I’ve felt like shit for over a month now. As I walk through the living room and kitchen to driveway to go somewhere, my parents sometimes greet me or ask a question but I can’t answer due to the fatigue. I feel like I’m out of breath and can’t get enough oxygen. I suspect this is due to 3 factors: the fact that I’m more active than ever before, nagging sleep apnea symptoms disrupting my sleep, and tolerance to Adderall building up once again. I’ve since I can’t always get things done at home (as explained in my “Environment” article), I’ve taken my ME/CFS books to the library to consider my options.
Regarding those 3 factors:
The biggest problem for me with regard to being active in hobbies and business is that the more I do, the more I have to do and the more I want to do. For example, despite feeling shitty lately I’ve increased my eBay earnings due to some new strategies and effort I’ve put into it. Buyers don’t wait for me to catch up on sleep, when they click that “Buy It Now” button I need to get that stuff packaged and shipped out. In addition to my personal eBay sales, I’m also helping a local music store sell some of their stuff online which is even more complicated. I need to always keep my eyes on things to respond to questions very quickly and communicate with the store owner to make a deal. I then need to get my ass to the music store, package up that big guitar, work with one of the guys that works there to print out a UPS label for me, and then I go drop it off. For my personal eBay sales I can wait a day or two if I really need to, but when guitars in the 4-6 figures are being purchased from a legitimate 35-year business I need to get the job regardless of how sick I am or if I’m off my meds.
As far as sleep apnea goes, I was disappointed to see symptoms return after losing weight. At my heaviest I was nearly 240lbs. I started tracking my foods last year to drop weight after struggling with a CPAP machine. When I got my weight down to about 205lbs, I suddenly (literally overnight) stopped waking up and slept through the entire night. I thought that was it – I’d heard that weight loss was a “cure” for sleep apnea. Unfortunately, symptoms returned. I spent sometime reading about sleep apnea and its causes and learned that while weight loss will improve symptoms, it doesn’t necessarily cure them. I’ve been about 190lbs for a while now and just started the process of tracking my foods again. I’ve read that even 10lbs can make a difference when it comes to sleep apnea symptoms (and blood pressure, too) so I’m hoping that will do the trick. I don’t understand why I slept fine for weeks at 205lbs before symptoms returned, though. I need to read more about sleep apnea if things don’t improve because I really don’t want to do another sleep study and bother with a CPAP again. Some people are cured by strapping something to their back which forces them to sleep on their side (I already sleep on my side), some cured their symptoms with weight loss, some find relief with a CPAP, and others are cured via surgery.
Regarding the last one, Adderall tolerance, this one’s tough. When the brain has become tolerant to stimulants like amphetamines and you spend some time without the drug, the next time you resume using, tolerance will occur much more rapidly. It’s difficult to tell how often I can use Adderall and get away with it. I’ve been generally following a 5-day schedule for a few months now (Adderall on the weekdays, rest up on the weekends) and this might be pushing it unfortunately. Like I said earlier, the more I do the more I want/need to do so it’s very difficult to take a break and say “I’ve got all these things I want to do and people to talk to, but instead I’m going to lay in bed all day without being able to think.” It needs to be done an I’m ok with taking a couple days off per week when I have no plans, but there are times where I have to decide if I want to risk a 6-day week to participate in something. Last year I spent over a month researching and then trying a peptide called BPC-157 (I should write an article on this) which may be able to repair damaged dopamine receptors but I did not notice a significant improvement. This could be due to the fact that those that see improvement are generally former addicts to meth and other amphetamines and no longer use the drug. The only other way to lower tolerance is to spend a significant amount of time away from the drug (months) so if things get too bad I’ll have to spend some time away from Adderall again. After the crash which occurs over the first few days I wind up in a state where I don’t have much energy and can’t think, but I could go through the motions of packaging up my eBay sales and shipping them out. I’d also have to figure out arrangements for the weekly open mic livestream I’m responsible for running.
There’s my current situation. The meds I’m on got me to where I am now which is great and more than anything I ever thought was possible… but I’ll need to discover some new things if I’m going to get to where I want to be.
If you asked 100 people who Black Sabbath’s singer was, most of them would say Ozzy Osbourne. That’s true, he was their singer… but he was only their first singer! In 1979, Black Sabbath fired Ozzy and continued on with other singers including Ronnie James Dio (Rainbow, Dio), Ian Gillan (Deep Purple), Ray Gillen (Badlands), Glenn Hughes (Trapeze, Deep Purple) and Tony Martin. The latter name is the one people generally know the least about, but was actually Sabbath’s singer for the longest amount of time, beating out Ozzy by a couple of years. I’ve always been very fond of Sabbath’s later years and actually prefer those albums!
In 1995, Black Sabbath was in talks with Ozzy about a reunion but there was a big problem – they were still obligated to release another album. They quickly threw together an album to get out of their contract with the IRS Records label. The album was titled Forbidden. This is by far Black Sabbath’s least critically acclaimed album and is generally panned by critics. It is certainly odd! Would you believe it actually features Ice T rapping on a song? Yep, this is the first and only case of a guest singer on a Black Sabbath album.
The best song on this album, by far, is the final track: Kiss of Death. This was a very strong way to finish off Sabbath’s studio catalogue and it indeed looked like it was going to be their final chapter until their reunions with Dio (as Heaven and Hell) and Ozzy.
Overall, I enjoy Forbidden… but we’re here to talk about the song that gave this blog its name.
This song starts out with a very repetitive riff in 4/3 time signature. Honestly, the vocal melody is a poor example of what Tony Martin can contribute as a singer. His vocals follow the melody of the guitar the same way Ozzy did in Sabbath’s classic songs N.I.B. and Iron Man, but the melody is far less catchy in this case. However, at 1:28 Tony Iommi plays a riff that’s much more appealing to the ear. As a matter of fact, I enjoyed this riff so much when I first heard it that I ripped it off in some of my earliest basement recordings.
I didn’t name this blog after the song’s guitar riffs though. When I decided to create this blog I didn’t spend much time brainstorming or wavering back and forth between several choices – this name came to me immediately and I stuck with it. In addition to the title, many of the lyrics apply to this topic.
Is life everything you want to be? Does it give you everything that you need?
Does it live up to your expectations?
Are you ready for the celebrations?
This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.
Are you chained to a life that you don’t want? Is it hard for you to find a way out?
Can you live without the love that you need?
Are you sure that what you have is so real?
This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.
All of your life, they try to take your cover,
Turn you into another, and make you change your name. When you fall, it’s up to you to recover, You can’t depend on another, to help you with the pain, yeah.
I’m shaking off the chains, I’m shaking off the chains.
This is not for the weak of mind,
Are you sure that you’re my kind,
Do you want to be part of me,
Are you sure that you can really see.
In the night, you say that are falling
People always calling, calling out your name.
What do you know, a face appears at the window,
Tapping on the window, the window of your soul.
I’m shaking off the chains, I’m tired of all the pain.
I’m shaking off the chains, Let me live again!
When given a choice during my sickest years, I would always choose whichever option was most familiar to me. New experiences take effort whether it’s becoming familiar with the characters in a new TV show, navigating a different route to a destination, or trying a new recipe. I didn’t have the brain power for any new information to stick, so I stuck with what I knew – and this also applied to music.
There was a stretch of several years where I only listened to one band: Black Sabbath. You might think that’s a pretty small group of song to pick from but it gets even better: I only listed to the 1980-1996 era of Black Sabbath. I’ve always had a preference for their rarely-celebrated later years for some reason. When Ozzy Osbourne was fired in 1979, Ronnie James Dio took over for a bit, then there were a few unstable years before Tony Martin finally gave the band some stability as he remained singer for their final decade of existence.
I did shake thing up from time to time… sort of. I rarely listened to the studio albums. I instead listened to live performances after discovering places online where they could be downloaded. These came from several sources of varying quality: soundboard recordings that were broadcast over the radio or TV, high-quality audience recording, and barely listenable garbage. There were dozens of recordings available for each tour with usually at least one high-quality recording. This allowed me to change things up from time to time without leaving my comfort zone.
Music was part of my nightly routine during these years. I would take my sleep meds on an empty stomach, have something to eat, then once I felt drowsy enough I’d pop a CD-R into my nearby stereo and listen on a low volume until I fell asleep. Music wasn’t really something to enjoy during this time of my life, it was just something to fill the silence.
My enjoyment of music and the desire to explore new songs had a brief boost in my early 20s. There was a period of about three years or so at this time of my life where I would drink alcohol as often as it was available to me. By then the Adderall wasn’t working as well and I had constant muscle pain from years of trying to live like a healthy person. Alcohol was great at numbing the physical pain, allowing me to get through physical activity from standing up through a concert to sex. What I enjoyed most about booze though were its psychological effects.
Stimulants make you cold and unfeeling but when I drank I was able to feel. I could laugh, cry, become angry, passionate, etc. It didn’t matter if they were positive or negative emotions – feeling anything at all made me feel like a human being for once.
Getting drunk was my way of self-medicating before I understood the science of how and why I enjoyed it. Have you ever had a few drinks (or more) and really enjoyed a song? Picture the stereotypical drunk girl at a party, what is she doing? She’s up on the table dancing her ass off telling everyone around her “THIS IS MY SONG!” What about the booze causes this effect?
The neurotransmitter GABA is partially responsible. Altering the amount of GABA floating around in the brain will dramatically alter the way a person feels. Prescription drugs that increase the amount of GABA in the brain are used to treat insomnia (Restoril, Halcion), anxiety (Xanax, Valium) and used as muscle relaxers (Lyrica, Baclofen). Alcohol also (indirectly) increases the amount of GABA in the brain. That, combined with its short-term effects on other neurotransmitters like dopamine, makes music sound great.
I stopped drinking years ago when the aftermath stopped being worth the couple hours of pleasure, and spent the next couple of years finding myself listening to Black Sabbath live shows again.
I stopped using Adderall for most of 2014 which allowed my brain to bounce back slightly. As long as I didn’t take it every day anymore, it was one again providing me some energy and flooding my brain with dopamine. A year or two later I discovered Baclofen which increases the amount of GABA in the brain and noticed something interesting: Music sounded better than it ever has before! This feeling was similar to but very different than the way I enjoyed music with alcohol and fortunately a lot better.
The first time noticed this, the first time I really felt music in a long time, was when I heard the song “Arizona” by the Scorpions:
My favorite part of this song is the guitar lick that happens shortly after 1:05. I can’t describe the feeling this song gave me with words beyond saying it was euphoric and I was nearly brought to tears. I make the alcohol comparison because I imagine that’s the closest feeling most people have had to get them to relate to this, but it this was a truly different and better experience.
I frequently got sidetracked for hours when a good song would become more important than whatever I was trying to achieve at the time. I revisited old favorites, bands I discovered in my teens but hadn’t listened to since. I explored new bands in my usual genres of hard rock and metal. What surprised me most though was that I found myself enjoying genres I never explored before!
I moved from rock, to pop, to funk, to jazz, to classical, to ragtime piano. Each time I discovered something new, I would branch off in several different directions and couldn’t keep up with myself.
Home listening is just one part of the music experience. I plan to write about attending live music in the audience as well as performing live music myself in the future.
Tchaikovsky’s 1812 Overture is so badass it has a cannon in it (at 5:00)
I saw P-Funk live last year and it was incredible.
Everyone knows this one, but I didn’t appreciate it until recently.
For whatever reason I enjoy songs about paranoia, so the “Are we under their control?” line really works for me.
We’re a few weeks into 2018 and the things I’ve done so far are incredible, but it has come at a price and I don’t know if this level of activity is sustainable.
When 2017 started I thought I was ready to crank things up to the next level. I had things I wanted to do, ideas… I wanted to finally take a shot at stand up comedy, play music at different venues, start writing in a regular and organized manner, look for part-time work, and many other things. I still had a pretty good year, but I had to postpone a lot of those goals when some health setbacks occurred. One year later in 2018, I’ve gotten those issues under control and am armed with more knowledge and tools in my arsenal to take that next step forward. I’m almost where I wanted to be last year.
All the things I listed above, I’ve been doing. I’ve been having a lot of new experiences in new places with new people, and with new peo ple comes new opportunities. I have some exciting plans later in the year that have given me that kick in the ass to get to the gym to try and get my body – a body that still spends many hours a day laying in bed in front of a laptop – in better shape. Every day I get up, head to the post office to ship out my latest eBay sales, work on some wild mild music idea (like trying to figure out which genre of music I’m going to play drums over a medley of next), do some cardio and lift weights, meet with friends, and discuss plans.
It’s really taking a toll on my body. For the last few months, I’ve been able to maintain a Mon-Fri schedule, and sleep through the weekends to rest up. At first, I would start getting pretty tired by Friday… then Thursday became difficult too… and now this week, I was already feeling exhausted on Tuesday. The symptoms of exhaustion have been nearly constant, and as soon as things start wearing off around 9pm-11pm I have a couple of choices: take more meds, or drive home before the dizziness gets worse and interferes with doing so safely. There have been a couple occasions so far this year that it gets to the point where extra meds don’t even help and all I can do is lay in bed. This would be fine if I could just sleep it off, but I can’t sleep well until these meds get out of my system.
I didn’t start this blog to bitch about fatigue, you can find that in plenty of other places on the internet. The exhaustion I’ve been feeling is a positive thing, it’s the result of doing so much. I can live with the daily fatigue and there are ways I can distract myself from it. Staying engaged socially helps a lot – I might be tired but I can remain in a good mood if I’m in the right company. My worry though is that I constantly feel like I’m tiptoeing on the edge, that hour I’m just a decision or two away from rendering myself unable to stand up or drive home.
One thing has remained a constant during the last few years… if I have a symptom that’s really bothering me or I’m not happy with the way I’m feeling, I can figure something out if I set my mind to it.
I’m typing up all the thoughts in my head without rereading the post or editing. Enjoy the ride.
People enjoy hearing storing of overcoming life’s obstacles, so I share them when they happen and I have a pretty good one at the moment.
I don’t think I’ve ever enjoyed feeling shitty as much as I did the past 48 hours. I did a lot this week so last night I hit my limit and started having exhaustion symptoms. When this happens I get dizzy, sweaty, nauseous, and have trouble thinking clearly. Standing up is like tipping over an hour glass and I only get 30 seconds on my feet before I start vomiting. I can usually feel this coming – I basically start feeling milder versions of all these symptoms. I can avoid vomiting by heeding the warning and laying down and staying hydrated.
Last night, an exceptional night of music was coming to an end at Rick’s when I started feeling this coming. There was a problem – I was totally out of food at home and needed to go shopping. I decided to try and get it done anyway because I was going to be either equally tired or worse the next day. I had about 10 minutes left of shopping to do when exhaustion moved into its next stage and for a few minutes I thought I was going to puke in one of the aisles. I tried to speed things up and finish. My cloudy mental state led to a couple of unusual purchases, like a boneless frozen turkey (I didn’t see the chicken breasts I was looking for, and it was close enough). I usually use the self-checkout but I looked for one with a cashier so I could lean on something for a few minutes but none were open. I could tell that I was visibly exhausted, and employee noticed because as I approached the open self-checkout station, she saw me and asked “Would you like me to ring you up on aisle #?” It gave me a minute to lean over and get some temporary relief from the discomfort. I sat in the car for a minute to make sure I could drive home, and I did. After laying in bed for a half hour I put the groceries away the only way I could: by sitting on the floor next to whichever drawers I was putting food into at the time, spending 30 seconds here and there on my feet because that’s all I could do. After another short rest, I realized there were some other things I needed to do so I put together an environment of distractions to surround me while getting it done. I threw on a Macho Man Randy Savage documentary and had a chat with my brother, keeping me occupied.
Today I woke up after a decent amount of sleep hoping it was enough to hold off the fatigue but I got that feeling of impending exhaustion again at 6pm. I had plans with friends at 8pm that I was really looking forward to. I kept my plans, but took some precautions. I got a ride there and back in case I became too dizzy to drive home safely. I made it. I ended up drinking a shitload of water and taking a lot of Adderall. The physical energy it provides is the first effect to wear off after 4-5 hours (the other effects, mental energy and wakefulness last for a good 20h) so I had to keep re-dosing to postpone the crash and it totaled a large (but safe) amount. I had a great time playing music and having laughs with friends. While the feeling of lingering exhaustion never left me, staying engaged socially prevented it from being an obstacle. I eventually did hit that point where I needed to stop, but when it finally happened, we were all sitting on a couch playing a game so I didn’t have to stop doing what we were doing and everybody was heading home a half hour later anyway.
Exhaustion aside, even though by now it’s been a couple years reconnecting with old friends and building a larger social circle than ever before I still don’t take moments like this for granted. Every few hours I at my surroundings and think “Whoa, this is my life now? I have many of the things I wanted all those years?” I don’t mean to harp on it, but it was only a few years ago that it still seemed beyond my reach and in fact many of the things I’ve been doing I couldn’t even imagine.
I have some interesting things on the horizon. Coincidentally, several opportunities to play live music have landed on dates this week and next so music-related brainstorming and preparation what’s currently occupying much of my time.
A couple days ago, I attended an open mic in Providence that featured some of the most unique and talented performers I’ve ever seen. I checked out all the open mics in the area last year to make sure I wasn’t missing out on anything and while I met a lot of nice people, none of them were worth returning to. I guess all the exceptional people have been in Providence all this time. It took place in a small art museum with wooden floors and walls which provided a unique environment with lots of reverb. There were a few dozen people there and each performer got 5 minutes, keeping a quick pace. Get a load of this, I saw:
• Musicians playing a wide variety of instruments (a couple of which I’ve never seen before)
• A guy that played the banjo while singing in an odd Mongolian folk throat style
• A few comedians including a man that was deaf until age 40 cured by a cochlear implant. He looked like Barney Rubble and told a lot of self-deprecating, morbid jokes and was hilarious.
• A female duo named Fanny and Dani, an accordion player and vocalist who sang a medley of songs in French. They were my favorite. Actually, they’re going to get their own paragraph:
When I started taking Baclofen 2-3 years ago, the GABA it flooded my brain with caused me to enjoy music to such a degree that I was nearly moved to tears. The only way I can explain this that will relate to many people is by comparing it to alcohol which also fills you with GABA – if you’ve ever really enjoyed a song after drinking it’s due to a similar thing happening in the brain, it’s why people love to sing and dance after a few drinks. Anyway, I started to really feel music emotionally again for the first time in a while. I began to appreciate many genres that I never did before like classical, ragtime piano, and funk. I explored this new feeling as often as possible, I listened to all the bands I’ve ever loved and all the new bands I had discovered. I don’t enjoy music any less than I did during this time, but I haven’t had that euphoric feeling where my eyes start to water in at least a year. While these two were playing, I got that feeling again and it took a little bit of effort to avoid becoming visibly emotional.
I took a brief video with my cheap phone that I posted on my personal Facebook page:
People have been telling me for my entire life that I’m hilarious and should take a crack at stand up comedy. I always thought about it but considered myself to be more witty as in, I’m good at saying funny things spontaneously to comment on situations that occur in front of me. Creating the situation yourself from scratch in a stand up act is a different entirely. Plus, I don’t even enjoy stand up comedy. Much like TV and movies, when I’m medicated I’m too stimulated to enjoy sitting still focused on a passive activity like that and otherwise I’m too tired too follow it. Regardless, last year I decided that I was going to give it a shot but as 2017 started, it was one of the many goals for that year that sleep apnea derailed.
Although that forced me to wait, I started writing down any thoughts I had that with potential to be turned into jokes. I’ve written many things down since then, but it’s very similar to the way that I used to come up with riffs and jingles but rarely came up with full songs – I ended up writing down a lot of half-jokes, funny observations, and jokes with deliveries that were yet to be determined. While listening to these comedians at the Providence open mic, I was in my head brainstorming and connecting the dots to finish many of these jokes. What I’m getting at is, this open mic experience came along at the perfect time and is the perfect venue to give comedy a shot myself. I’m going to return in a month and try it for the first time.
As I’m writing this it’s 6:40AM. It’s not uncommon for me to stay awake this late into the morning when I’m planning on resting on the following day. Tomorrow I won’t have the ability to accomplish the things important to me now and in fact they won’t even be important any more, I’ll be too tired to care. I stay up late to cling to every additional minute that I can keep this momentum before slowing to a crawl and eventually starting again on Monday. The other reason I do this is so I can easily fall asleep without Temazepam. I didn’t have Temazepam in my arsenal until recently, and it’s no coincidence that I haven’t had to deal with any sleepless nights recently. Seroquel works partially in the opposite way that Adderall does – it blocks dopamine, which along with norepinephrine floods your brain when you take Adderall. That sounds like Seroquel would make for the perfect drug to get some sleep on these days and while it is indeed pretty good, it isn’t enough to work reliably. During the many years that I took Seroquel to sleep (along with Trazadone, a gentler sedative) I just accepted that insomnia was a part of my life, something that occurred at least monthly, sometimes weekly.
Here’s the problem (which I mentioned earlier). Adderall has three stimulating effects that help me function: physical energy, mental clarity, and wakefulness. The physical energy wears off after 4-5 hours, but the other effects last about 20 hours. See the problem? The rest of the world is going to keep living on their 24-hour clock without caring if I slept or not. If the day was 30-something hours long this health puzzle might be half as difficult, but in order to live a 24-hour day I have to do this constant push-and-pull with my energy level. I wake up tired and I go to bed wide awake every day. This led to a built of guilt for many years before I really understood how these meds worked and realized that expecting to sleep the way most people do was unrealistic. Once I understood this, I gained the freedom to do one of two things: I could explain it to people that expected me to go to bed at a decent hour and make them understand too, or if that didn’t work I could disregard their criticism because I couldn’t meet their demands even if I wanted to. You can’t go to bed early with amphetamines in your system, only later.
The original point I was leading towards but got away from is that the other reason why I stay up so late on my last day before a couple days of rest is that by waiting so long after my last dose of Adderall, Seroquel puts me to sleep reliably.
Perhaps I’ll write more of these “Things On My Mind” posts in the future. There are always things on my mind, but today’s situation was perfect for spontaneously writing out all of my thoughts. I’m very stimulated and the gears are turning in my head yet I’m too exhausted to do much else, and I had a very eventful week full of new memories and ideas.
Now if you’ll excuse me, I need to sleep for a couple of days.
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:
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.
My name is Adam, and many of you reading this are already familiar with me. If not, check out the “About Me” page I wrote last year.
The goal of this blog for the time being is to have all the things I write about ME/CFS in one place. Over the past couple of years, my writing has been all over the place: Facebook posts, direct messages to friends, Reddit posts, verbal rants, etc. I’ve written in this blog a few times but I’ve never kept up with it consistently. Over time I gradually started to receive a lot of messages, usually on Reddit, from people that found something I wrote and identified with it. Many of these people are where I was a few years ago and want to get to where I’m at now.
Over time this blog will evolve to include new features to become modernized. I need to add all the usual stuff like social media charms and an e-mail list. Right now though, I just need to make this public and get moving with it.
To provide context for some of the things I’ll be writing about, I’ll explain my life.
At the moment, I’m active about 4-5 days per week. By active I mean I’m up and out of bed, dressed, and can function both physically and mentally. I have enough energy to get through the day, socialize, and achieve my goals. I’m limited to 4-5 days because of the way these meds work: Adderall gives me physical energy and mental clarity but like all stimulants, tolerance builds fast and if I took it every day it would stop working in no time. The other issue is that a powerful stimulant requires a powerful sedative at the end of the day, and if I took Temazepam every day it would also stop working and worse, I would have to go through benzodiazepine withdrawal to get off of it. That doesn’t sound too fun.
I made a lot of progress in 2017. First, I improved my sleep apnea symptoms through weight loss. This was a big obstacle, making it impossible to be active for more than a couple days in a row due to the lack of sleep. Although these symptoms have significantly improved, some still persist. Next, I identified the cause and treatment of the severe nausea and vomiting that I developed in the middle of the year. I suspected it to be related to the motor tics and tensing of muscles that can occur due to stimulant use, it was wrenching my gut.
2017 also brought an achievement I believed to be impossible: I received my first paycheck! I’ve been able to do a lot of fun things over the past couple of years, but working in any capacity remained an impossible dream. It’s easy to do things here and there when I can plan ahead and ensure I’ve had enough rest but work requires predictable, consistent good health for the vast majority of days in the week. Since my early 20s, I’ve visited college career centers, disability services, and had several appointments with Mass Rehab which lead nowhere. The work I found wasn’t the result of official aid but from the social circle and connections I had built up.
Again, it was only four years ago that I could barely get out of bed, had been years since I spoke to any of my friends, and I found no enjoyment in life. I hope you enjoy following along my journey and find the experience informative and entertaining.
Soon I will change the main categories you see up top to something like this:
Commentary: I’ll give my take on whatever topic is on my mind to give you a look at the world through my eyes.
Treatments: I’m always reading about or experimenting with different treatments. I like to talk about my experiences and the things I’m learning and I’ll do so here (instead of random outbursts of “so guys, I’ve been reading about fluromodafinil…” at social gatherings).
The Healthcare System: Quite often, finding the best treatment is the easy part – the challenge is navigating the healthcare system and acquiring it. The organizations meant to be on your side often become barriers. Between the FDA, DEA, doctors, insurance companies, and the pharmacy, there’s always a challenge and I’m still learning.
Blog: My daily life, less formal writing and rants about whatever happens to be on my mind.
Feel free to reach out to me via email at email@example.com until I set up more convenient contact methods.
The last time I tried to be active for three days in a row (by active I mean waking up at a decent hour, taking stimulants so I can function, and leaving the house), it didn’t go so well. After the first day, I went to bed hoping to rest up and recharge, but I didn’t get as much sleep as I needed. I was hoping that I could catch up when I went to sleep after the second day, but instead I woke up after only three hours of sleep. After tossing and turning for an hour, I recognized that I was definitely not going to be falling asleep again so I started my day.
I can handle one night of insufficient sleep, but any subsequent nights leave me in very rough shape. Lack of sleep amplifies all of my symptoms: brain fog thickens, every muscle of my body aches, nausea increases, and an overall feeling of severe discomfort comes over me. This is precisely what happened the last time I tried to be active for three days in a row. Making matters worse, the third day was a Thursday. That evening, I went to the open mic at Rick’s Music World like I do every Thursday to run the Facebook livestream and see all of my friends there. Usually, socializing with everybody and playing music can take my mind off of my aches and pains while I’m there, but on this particular occasion there was nothing I could do to distract from the discomfort. I knew that I looked as miserable as I felt, which really had people worried because everybody at Rick’s is used to seeing my at my best when I’m there. This unpleasant time was the worst yet of several bad experiences I had attempting to stay active for more than two days within the past few months at that point. Much like touching a hot stove, we as humans learn to avoid things that hurt us. During the last couple of months, I made sure to get lots of sleep and rest between my active days. I’ve mostly been getting as much as I can get done one day, resting the next, and repeating, with a few double-headers here and there.
Although it’s human nature to avoid things that have caused us pain in the past (and those who are constantly sick learn to do this even more than the average person), one of the most important things I’ve learned over the past couple of years is that I constantly need to be challenging my limits. Sometimes our situation changes but we don’t realize it because we’re still playing by the old rules. I have lots of memories of certain scenarios causing me pain and discomfort: things like travelling, standing up in the same spot for long periods like at concerts, and car trips causing nausea and muscle stiffness. These memories caused me to avoid a lot of things for a while. After getting myself a bit better, I’ve tried to overwrite those bad memories with good ones and I’ve achieved that in many situations.
I reflected on the changes that I’ve made over the past couple of months and figured that I was due to give a three day streak another try… and guess what? It was a success. I’m writing this at the end of day three. Yesterday was a little rough, but I still accomplished what I set out to do. I wanted to go to some thrift stores and look for some things that I could flip for a profit on eBay. I called up my friend Laurel to see if she wanted to come with me, thinking that socializing might help distract me from my aches, and I was right, it worked. I went to bed last night hoping that I would not wake up after three hours as it happened last time, and I fully expected my body to demand many hours of sleep. I was pretty sure I was going to wake up at 5pm. To my amazement, I woke up at 2pm feeling totally rested and ready to face the day!
This experience just reinforced everything I already knew in the first place. Any time I suspect my situation has changed even just a little bit, I need to re-evaluate my limits and see if I can push the barricade around me a little bit more. I got a lot accomplished during these three days, and I hope I can repeat this experience soon.
I considered using this post to explain the pros and cons of keeping momentum for several days in a row like this, but that’s a post for another time.
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.
As I write this, I am sitting on a stool in front of my laptop at Rick’s Music World. I’m here every Thursday night to perform at and livestream the open mic. Anyone who knows me on even a casual level has heard about this place and probably seen some videos of my performances. It was here that some of the greatest moments of my last few years took place, including my incredible Halloween feature, which happened during the months that I got away from writing in this blog. I’ll need to write about that and fill in the blanks sometime.
Right now, I have other things on my mind. Sometimes my symptoms start causing a chain-reaction and really kicking my ass, and this is one of those times. I’ve fallen way behind on sleep, which is increasing my fatigue and brain fog. It also makes my Adderall tics worse, and the stiff muscles are causing that burning pain in my shoulders. For some reason, the past few months, when I get that burning shoulder pain it eventually causes nausea… so yeah, I’m pretty uncomfortable right now, but the symptom that caused this chain reaction was insomnia. If I could fix that, all the other symptoms would improve. Well, tomorrow I hopefully start dealing with that.
I finally had a sleep study done a couple of months ago to confirm the obvious: sleep apnea. Every night I sleep for 2-4 hours and then wake up. If I took Adderall during that day, there’s still enough floating around in my brain stimulating it that as soon as I’m awake, my brain is all “We’re awake again? Great! What are we doing? Let’s work on that project we started yesterday or start another one! Let’s go!” so I can’t get back to sleep. I can afford a 2-4 hour sleep night here and there, and actually I like having one from time to time. When you’re blasting your brain with amphetamines, missing one night of sleep isn’t a big deal and during these 40-hour bursts, I get a lot accomplished. The problem starts occurring on days 3, 4, etc… I become a zombie that can’t think or move or get anything productive accomplished.
Tomorrow I pick up a CPAP machine, which basically makes sure you keep breathing through the night to prevent waking up. The company is named Enos, which is funny to me not only because of wrestler Mike Enos, bus also because it rhymes with penis. I’m easily amused after falling way behind on sleep I suppose.
Anyway, I’ve heard mixed comments about CPAP machines. Some people tell me that their sleep improved from day one and it was the answer to all of their problems. Others tell me that it eventually helped, but it took up to a year. Others say they still can’t sleep at all. My hopes are high, but the one thing I know for sure is that my sleep can’t possibly get any worse.
The two symptoms I took aim at overcoming this year were sleep and pain. I’ve got my pain somewhat under control, now sleep is the biggest enemy. There are so many things I want to get accomplished that aren’t possible when I don’t sleep.
Fixing insomnia is one of the final pieces of the puzzle. I’m getting very close to finally figuring it all out.
I went to PAX East today. It was awesome, and maybe I’ll write about it more later, but some pain just subsided and I want to sleep now.
During my teens I had a few years where I dealt with severe abdominal pain pretty much daily. It was the least favorite time of my life and it’s the symptom I’m most afraid of returning. Almost all of my memories of taking the train into Boston were during these years, I saw a stomach doctor in Mass General for a while and spent a lot of time on that train in awful pain. Since feeling a bit better, I’ve been replacing memories of things I associate with bad moments with new, good memories. Part of why I wanted to go to PAX was to do just that since I took the train in. It was all going according to plan, until…
My stomach was a bit off when I woke up, and a little more off after a churro and pretzel at PAX. The group decided to stop off at a sushi place afterwards and I had been meaning to try sushi at some point anyway, so I took this opportunity to do just that. Big mistake! When I got home, the pain really started, and it felt a lot like it used to during those years. I had a few types of pain back then, one felt like food was grinding against ulcers in my intestines (doctors claimed they couldn’t find ulcers, but oh well), and another felt like my intestines were filling up with gas to the point where they were stretching so much they were treating. That’s the type of pain I got tonight. It started about 5 hours ago and I’m just now finally farting out the rest of the tension. I vomited a bit earlier that helped as well.
Luckily, my sick sense of humor finds the irony here funny. As long as I don’t get this kind of pain again any time soon, I’m good with this. PAX was still amazing, and I don’t even regret trying the sushi. Now if someone asks if I’ve tried it and I say I didn’t like it, if they try to argue with me I can tell them it caused this stomach pain! I plan on taking a trip into Boston soon to see an old friend, too, so that can be my opportunity to finally replace those bad “train into Boston” memories with some good memories.
I missed talking about a lot of things during the last few months when I wasn’t writing in my blog, and this is one of those things. It has all the features of a good blog post: It’s a story of success, and a story of how many healthcare professionals are completely incompetent.
My low libido has been a source of anxiety during my entire life. It has had a negative impact on every relationship I’ve ever had, starting with my first one at age 14, continuing to my most recent one in my early 20s. Despite that, it’s not an issue that I’ve addressed until recently because I had bigger problems. When you can’t even get out of bed, it doesn’t seem practical to worry about getting turned on. Now that I’ve made decent progress with my more important symptoms, I decided it was time to start dealing with my penis.
In early 2016, I asked my primary doctor for some blood work as I do from time to time, but this time I asked him to check my testosterone level. Like I always do when it comes to anything health-related, I educated myself about testosterone and what causes the levels to change over the course of the day. I learned that testosterone levels are highest during the first couple waking hours of the day, and that when getting your levels checked, you need to get your blood taken during these first hours because they use the high levels as a baseline. I called in to set up my blood work appointment and the nurse kept trying to write me in for a 7am appointment. I explained to her that my sleep schedule was unusual – my day usually started around 12pm-2pm, so I needed an appointment around then. It took a few calls back and a little arguing, but eventually they wrote me in for 2pm. I got the results, and my testosterone level was on the lower side of the normal range. It was not low enough for any treatment.
Towards the end of 2016 I had a physical, so again I asked to get my testosterone levels checked. I explained to my doctor about my situation earlier in the year, explained why testosterone is checked during the first couple hours of the day, and explained my sleep schedule. He said “Let me check with our endocrinologist and we’ll give you a call.” Endocrinology is the study of hormones. This is basic, fundamental stuff so I figured a hormone specialist would know what to do (you would think I’d know better by now). Sure enough, I got a call back later in the week asking me to come in at 7am. I called back and spoke with the nurse there that the endocrinologist to either write me in for a 2pm appointment or explain to me why I’m wrong about this. I explained to her how people with unusual illnesses like me need to know these things because doctors are so clueless. She told me she would again leave a message for the endocrinologist and get back to me. Sure enough, I got the call a few days later. “Hello um, Adam? So uh, the endocrinologist said um, you need to come in at 7am because uh, um, so the test can be accurate.” I started to argue back explaining that if I had my blood drawn at 7am that would be the END of my day and therefore levels would be very low and the doctor would be concerned, but I stopped myself. “Fine, let’s try it their way.”
Sure enough, I got a call a few weeks later. “Adam? Yeah, your levels are very low and the doctor is concerned.” Shocking! They put me on a testosterone supplement, a topical ointment. As I looked into it, I found that the cream is the worst form of taking testosterone. When you think of guys taking a testosterone supplement you envision them injecting it into their leg, right? Well, there’s a reason for that. The cream is very unpredictable – sometimes the body will absorb 30% of what you rub on your shoulders and other times 70%. It causes a roller-coaster effect of your hormone levels so some days you’ll be getting random erections and other days you can’t get any action going on down there. Oh well, I figured I would give it a try so I could experience what higher testosterone levels felt like and if it was indeed the answer to my libido problem. I set up another blood work appointment (at 7am again) to follow up on my levels after a couple months of taking the supplement, and the fun continued.
I was told to go to Brockton Hospital for my follow-up bloodwork. It would have been easier for me to go to the doctor’s office as it was much closer, but I went there as instructed to. As soon as I got home, I got a call from the office. “Adam, did you go to Brockton Hospital? We were expecting you here at the office.” The icing on the cake was when I got the results of that test. I was interested in seeing how my levels had changed after a couple months of treatment. Instead, I opened up the envelope to be informed that “Adam, your prostate is fine.” Well that’s cool, but what about my testosterone levels?
Later this week I meet with the chump endocrinologist. I’ve read a bit about what I can expect during this appointment. Maybe he’ll continue with the cream, or if I can convince him to switch me to the shots, he might prescribe a low dose that will cause a similar roller-coaster of hormone levels. I’ll probably end up having to find a competent doctor in Boston to give me what I want.
Did the testosterone work, though?
Hell yeah it did. Before this, I imagine if most people thought back to the last time they were really horny it would only be a matter of hours, but I can only really recall one moment in my life when I was really horny in my late teens. Since being on this testosterone though, I’ve had a healthy sex drive as a young man like myself should. Look out, ladies.
For me, insomnia comes in waves. I will have no issue sleeping for a few months, then I’ll have a few weeks in a row where I can’t seem to get a decent night of sleep. What’s most puzzling this time though is, I’ve made several changes lately that should have made getting to sleep (and staying to sleep) easier:
I’ve lowered my Adderall dose, which has helped my shoulder pain a lot. My amphetamine tick is rubbing my fingers together, which causes a repetitive strain injury in my shoulders.
I’ve had more regular physical activity than I’ve had in many years, going to the gym regularly.
I’ve tried all sorts of additional sleep aids available to supplement the Trazadone/Seroquel with: Unisom, Benadryl, Valerian, etc. Anything with limited risk to my brain chemistry.
Nothing worked… so I’ve resorted to something I’ve deliberately avoided my entire life: benzodiazepines. Benzos aren’t something that should be taken every day, because physical dependence happens fast and it sounds like benzo withdrawal suuuuuucks.
A while ago my psychiatrist offered me Temazepam (Restoril), but I needed to take medication to sleep every night, and I was not willing to deal with the problems that came with taking that nightly. A while after that, I was experimenting with all sorts of different things, looking for something stimulating to take during my Adderall break days. The only thing that cut through my severe fatigue at all was the curiously named CRL-40,941, commonly referred to as Flmodafinil among other things. It is one of many Modafinil analogues and perhaps the strongest. It is art of a class of drugs called “wakefulness-promoting agents.” Well, that description is very accurate. In fact, I was not able to sleep at all the night after taking it. After reading up it appears I am not the only one with this problem after taking modafinil analogues, and benzos are the only thing that works for others in this situation. Still though, I held off on the temazepam and just stuck to my Trazadone/Seroquel combo. I am still going to try using the night after a dose of Flmodafinil, but if my current bout of insomnia increases, I’m going to need to use it occasionally when I am in dire need of sleep after falling far behind as well.
The experience of getting prescribed it brought back some familiar sad realities about the healthcare system – many drugs that should not be taken daily are prescribed to be taken daily, and without warnings of the consequences. Before taking a new drug I always learn all about it for myself first. I read up on dosing information, side effects, personal experiences, drug interactions, the way it affects the brain chemically, everything. There is a lot that can go wrong when you are on a lot of medications, and many people learn that the hard way. There are many stories out there from people who trusted their doctor and took a benzo as prescribed – every day. A couple of months later they tried to stop and started having all these awful withdrawal effects.
Brain fog sucks. It reduces witty and intelligent people that are full of ideas to mindless zombies.
When I’m not on any of the medications I have on my arsenal I am a poorly-programmed robot. I can’t think, I don’t have any emotions, I have no interests, I don’t have anything to say… If you try to have a conversation with me, all my replies will be short like “yes” or “no.” I’m not me.
I’ve tried a variety of medications and supplements to fight off brain fog, and there are many choices out there.
Provigil (Modafinil) is a “wakefullness-promoting agent.” Many people have had some success with Provigil and it’s newer cousin, Nuvigil (Armodafinil). There is also Adrafinil, which converts to Provigil in the brain that you can buy without a prescription.
I’ve been taking 500mg Rhodiola Rosea, 500mg Niacin, and 50mg DHEA daily for about a month but I’m not sure if they’re doing anything significant. I have been feeling better since taking them, however it might be other things in my system. Rhodiola in particular is very interesting though and worth looking into.
Many say D-Ribose helps with brain fog but I tried it for over a month without any noticeable effects.
Often when dealing with medications you have to simply go through the trial-and-error process and see what works for you. Luckily, there are a variety of things out there to try.
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.
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.
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.
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.
I took a two day trip to Maine recently, and I shook off a lot of chains in the process.
I have a ton of memories of situations that caused me a lot of pain that I’ve been conditioned to avoid. You only have to put your hand on a hot stove once to learn to never do it again. There are many “hot stove” moments in my past.
Some years ago I drove a friend of mine to go see her girlfriend that lived an hour away. My friend didn’t have a license, and I had just gotten mine, so I figured a long car trip would be fun. It was about two hours each way, and afterwards my joints were so sore I could barely walk for a few days. This conditioned me to avoid long car trips.
I’ve been at concerts where my back will start hurting so bad halfway through the opening act that I can’t stand up anymore. Again, I learned to avoid spending too much time up on my feet.
I was able to improve my health a lot the past year or two, so I decided to challenge all of my fears. My situation changed, but I was still playing by the old rules. I need to overwrite these bad memories with good ones. I needed to shake off my chains!
I drove a couple hours north of my home state of Massachusetts to Maine. A good friend of mine grew up there, so she gave me plenty of ideas of where to go and we kept in contact by phone during the trip. I visited some beaches, ate some great food, spent hours walking around Portland, and played a couple open mics. Unlike most open mics that only give you 10 minutes to play, the first restaurant gave me 40 minutes! The second bar I played at wasn’t and open mic anymore but I was able to talk my way into playing for 30 minutes. I met a lot of very interesting people that kept me company after playing my music.
These were the happiest two days I could remember in recent memory. I was on top of the world. Sure I was sore as hell afterwards, but I just didn’t care.
One of the more annoying features of Chronic Fatigue Syndrome is post-exertional malaise. Any physical activity is followed by a long period of immune system flareups. This means a variety of symptoms such as muscle aches, dry skin, nausea, headaches, and other things. Any time I do a lot of physical activity for a long period of time (hours or a couple of days), it is followed by a couple weeks of all of my symptoms flaring up and feeling like I had a bad cold. After my two-day Maine trip, for the first time, I didn’t get sick afterwards.
This trip filled me with a lot of confidence for my future. I really needed it. I can’t let past memories of bad experiences prevent me from doing things, I need to constantly challenge my limits. Things change over time, but if you aren’t constantly challenging your limits, you’ll never know what you’re really capable of.
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.
Not getting anything out of doctor visits? There are things you can do.
Anyone with a mysterious chronic illness is familiar with the disappointing routine of seeing doctors. They run their tests, can’t figure out what’s wrong, try different medications that don’t help, then don’t know what to do. There are some things you can do to get the most out of your appointments.
We’ve all had doctors that are always in a rush. They hurry you along, asking you to get to the point, and they’re out of there before you know what happened. You are paying for their time, and this is your health and your life at stake here. Warn the nurse if you have a lot to say before the doctor sees you. This way he’ll know and can deal with his other patients first, giving you all the time that you need. You need to speak up and address everything on your mind.
Doctors know far less than what you would think – it’s up to you
Doctors are used to dealing with only the most common of problems. They don’t know what to do for anyone coming in with an unconventional illness. They will run their tests, find nothing wrong, maybe try a couple of medications, but then they’ll be left scratching their heads. You can’t walk into appointments just hoping that the doctor will come up with a great idea for you – you need to have an agenda for every appointment. I understand that when you feel like crap, the last thing you want to do is research things on your own. However, once you find that first drug that makes you feel a little better, that will be just enough to help you looking for more.
Doctors often don’t understand the medications they prescribe
Doctors have a short list of medications they try people on, the drugs that are pushed on them the hardest. For example, go see a rheumatologist for your joint pain, and they will throw Neurontin and Lyrica at you. Look around your doctor’s office: You might notice that every piece of stationery has a drug name on it. The drugs you see advertised on TV are also the ones being pushed on doctors. They are not prescribing unique drugs for your unique problems, they are prescribing the most common heavily-advertised drugs that vaguely treat symptoms similar to yours. The dose of each medication is very important as well, which doctors do not always understand. 10mg might not do anything, but suddenly relief comes at 30mg. Often they will try you on the introductory dose and then move on. For many medications, the starting dose will be completely ineffective, especially for those suffering from particularly debilitating illnesses.
The internet is a great resource, so take advantage of it! When looking up drug information online, don’t just look at the “WebMD” type of sites. These will tell you the “official” information provided by the drug companies themselves but don’t tell the whole story and won’t tell you what to expect. Look up sites where users discuss their personal experiences. There may be effects, side-effects, concerns, and warnings that you won’t see on WebMD. I used to think drug experience sites like drugs.com and erowid.com were just full of junkies trying to get high… no, often these people are sick and desperately trying to feel better – just like you and me.
You need to take an active role in your health care. Putting the effort in can be the hardest thing to do when you aren’t feeling well, but it’s something you need to do.