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 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.
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.
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.
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.
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.