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]”
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 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.
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.
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.
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.