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]”
Get in touch: firstname.lastname@example.org