exhaustion – Shaking Off the Chains

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

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

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

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

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

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

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

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

Not this time.

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

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

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

Saturday

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

Sunday

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

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

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

But something was wrong.

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

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

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

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

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

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

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

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

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

Monday

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

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

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

What Now?

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

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

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

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

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

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

I need someone to:

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

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

Get in touch: adamlsotc@gmail.com

-Adam

NJPW NYC & Insomnia 9/28-9/30

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

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

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

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

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

MVIMG_20190928_191129 — It was all worth it for this view.

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

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

Things On My Mind – 1/26/2018

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.

Next week, I’m going hunting for answers.

Things On My Mind – 1/20/2018

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.