Dr. Strangelove: Or how i learned to stop worrying and love my chronic fatigue

I have chronic fatigue. It was left behind after I was hospitalised with covid. It’s the cost I pay for being alive. Here’s how i cope.

I doubt you’d still be here if you didn’t know it’s symptoms, but here’s what the nhs has to say about it. This is not a story about its symptoms however. This is a story of how over 2 years after i was hospitalised with covid, i’ve reached something resembling a normal routine.

Disclaimer: this is based on my experiences, and while i hope they’re useful, I’m not a doctor, so if you feel unwell, don’t read this blog, go to someone who is. With that out of the way, let me prescribe anyways.

First things first, chronic fatigue is such a bad name. It’s almost so bad, it feels like a joke Ricky Gervais would make as he’s coasting of Greg Daniels and Michael Schur’s success on making the better version of the Office. “Myalgic encephalomyelitis” isn’t any better, because all it does is confuse you authoritatively. Perhaps if we had something simpler like “Heart Attack”, you’d know more about it, there’d be more research into it, and patients would have a better chance of getting diagnosed with it, and we’d finally have some sort of treatment for it. In this universe however, we don’t. And so this blog.

I’m sure people on chronic fatigue get better one day. Today is usually not that day however. Yes, doctors can help to an extent, mostly by validating what you have is a disease that disables you from going about your life as if you were healthy, however, there’s no cure for ME/CFS (at least as of writing).

It is poorly understood. Remember how Cholera used to cause pandemics back in the day and no one really understood how to deal with it till someone tried salt-water and fixed things? No? just me then i guess. Anyways, ME/CFS is that disease. This is a disease squarely in that bucket of those few diseases that aren’t very well understood and so can’t be very well treated. In the absence of evidence based medicine to inform us, we must become our own Frankenstein’s monster. Our very own N=1 study.

General Principle: Listen to your body

First: Establish a routine that you can live with. Then change things one at a time. Every change is a potential stressor. Then at the end of the day, see how you feel. Are you great (or same as you were before you changed things), worse than before or did you crash. If you crashed, don’t do that again, at least not for a while. If you’re okay, then you know you’re okay. Add this to your routine and add more things and see how long you’re okay for. If you’re great, let me know, cause I’ve forgotten how that feels.

Don’ add too many things at once. Try one or two new things a week. Expect PEM crashes every once in a while. They never stop feeling shitty but you’ll get used to them.

I’ve followed the above protocol (as much as i could) and I’ve now got a routine and a set of must-do’s, some everyday to make sure i can function. As it stands, any disruption to this, is suboptimal, i don’t crash as often as i used to, but i just might.

My must-do’s Or things my body shouted at me once i started listening closely:

1. Imagine a Tsunami coming your way. Now drink it (Stay Hydrated)

Embrace being a beverage goblin. I have at least 3–5 liters of fluids every day. I use this 2.5 Liter water bottle to drink throughout the day in addition to tender coconut water and watermelon juice, freshly juiced and strained every morning. Country delight and Swiggy are your best friends for this.

Note on coconut water: I’ve found coconuts from country delight to be fresher and easier to open than those from swiggy, though they have a much more annoying sales team trying to sell you fresh veggies over the phone after you subscribe. Also use a coconut water opener instead of a knife. As far as possible, try to have the coconut water fresh. For some reason, it seems to start fermenting almost immediately after it’s out of the coconut for me.

Note on watermelon juice: If you can, get a separate blender for just watermelon juice. It usually stays fresh for about 2 days, so feel free to prep the night before and store the juice in the fridge for the next morning.

I also like coffee. And so, I have a cup of coffee every morning, which i dilute multiple times with hot water throughout the day till it’s just coffee flavored water. It’s quite possible that you can’t tolerate caffeine as well, in which case definitely avoid this! To me personally, 1 cup of caffeine does nothing. It’s pretty much coffee flavoured water to begin with, so my HR/anxiety stays unaffected by coffee.

I also like soda. So every weekend, i get diet carbonated soda (catch has a bunch of great offerings of flavored soda you can try if you can’t take diet coke anymore). Now this isn’t a must do, but i’ve found rather than deny this, keeping the want fed is a better way to avoid binging later on. I’ve tried and can’t take sparkling water (flavored or otherwise), but I promise that i keep trying to drink healthier soda, since i really really like carbonated beverages, and have little-to-no side-effects from them. I do avoid sugar-laden carbonated beverages. Those are saved for special occasions when i go out. Then they substitute what would have been alcohol. I don’t drink alcohol anymore, alcohol gives me the worst diarrhoea ever.

2. Organise your life better

1. I use notion.so to take notes, and have a kanban boards to organise my to-do’s. I have similar boards at work too (jira, github, etc. all have these) to keep me on top of work. Always remember, divide and rule works for every task and there’s no task too small. “Open laptop” is a totally valid sub-task for days you just can’t find it in you to begin. Stacking small tasks like this, can often set up momentum to get you started.
2. Use google calendar to organise time.
   I’ve found scheduling “deep work” around other work/commitments works like a charm to make sure i get the most important tasks for the day done in the specified time. Everything else but that is optional. You can turn every important email into a google calendar event.
3. Forest App: Do you get distracted by your phone too? Well if you use the Forest app, you can grow tiny imaginary trees that will die if you use your phone. I don’t know why this app works but it does.
4. More Resources:
   Tiago Forte’s Building a Second Brain or Ali Abdal’s YT videos on Productivity (sometimes based on the same book) are great places to get started on this.

3. Rest More!

You’re going to feel more tired than ever in your life. So yes, eat healthy, stay active within your spoons/energy envelope, but at the same time remember: YOU WILL GET TIRED. In which case nap.

I sleep for 9 hours on average now. I used to average between 4–6 hours pre-covid and i felt amazing all the time. Life changes. Is 9 > 4 ? Yes. But 9 < 24 as well, and that’s what i focus on.

I don’t know what the right amount of pushing your energy envelope helps and what doesn’t, but i do know that whatever it is, rest doesn’t hurt.

4. Figure out what foods suit you

Eat foods you tend to feel better on. Usually you start feeling bad after immediately eating, so you know what won’t suit you.

Here’s what works for me, and again, I tried and PEM’d till i found something that works:

1. I don’t eat carbs till the evening, since any carbs in the day make me sleepy.
2. I mostly eat fruits (along with fruit juice in 1. above) or meat in the day.
3. In most of the 5 cities in India you’ll be able to find Licious pre-marinated fresh meat. It’s really easy to cook.
   Pro tip: If can try getting an airfryer. I’ve never used an appliance more. It’s cheaper than a microwave, easy to clean and you can use it to make frozen fries.
4. That being said, i avoid Red Meat completely. Because any amount of red meat leads to me having a gout attack. I haven’t had Haleem in 3 years. But i will always remember it’s taste, and that will have to be enough.
5. I eat the heaviest meals of the day at night, post work and when all i have to do are watch TV, unwind, and sleep.

5. Find your palliative

My muscles sometime spasm randomly. So i use the following to make my life more comfortable. These aren’t cures, just palliatives to make your life easy.

1. For my Muscle Spasms and Pain: Get the more expensive Pink Water heating bags. Or really any heating bags. Electric ones over the water ones. They’re super convenient. I use them every day in the morning.
2. For back pain while sitting : Get this wedge shaped pillow for all those movie watching sessions from your bed. My back pain is gone after this.
3. I also have a heated orthopaedic pillow for my chair that i use sometimes. But i can’t seem to find a link to it online anywhere. If you do find them, i can vouch that they’re amazing tech for a very niche community.
4. Garbage bags on the bedside/close-by (also available on swiggy/zomato for same day delivery): Sometimes when i don’t sleep enough at night, i wake up and puke in the morning. The garbage bags are just in case i spend the odd night awake (like i did in December to play God of War) then if i puke, i’m prepared. Words i never thought i’d use together in a sentence.
5. I can’t tolerate heat or humidity very much anymore. So my AC is always on. A higher electricity bill? Sure. But it helps me function in the day.
6. I don’t do well with cigarette smoke anymore either, so i tend to avoid it.
7. I don’t tolerate alcohol very well either and so I’m now a teetotaller. Do i miss alcohol? Honestly I’m more a soda person, and i do have (diet) soda occasionally so it’s not that bad.
8. For some reason i also just can’t stand white florescent lights at night anymore. I have one of those wifi LED bulbs in the bedroom that I can control the brightness and color of. It really helps. Plus i can now turn off the lights from my bed and don’t have to get up for it.

6. Join a Support Group

Sometimes you just need people to shoot the shit with who also have the same issues. For me it’s the India Covid Survivors Group on telegram that’s been the most helpful. Many of the ideas that i’ve tried and tested has come from here. For example, staying hydrated with Coconut water and Watermelon juice is my way of fluid loading that helps patients with POTS (another (not) fun disease).

8. Things that i tried that didn’t work

Lots of things don’t work too: small meals taken 6/5/4/3 times a day, compression stockings, body massages (just make things worse), probiotics (cause diarrhoea), massage guns (what a scam), painkillers in general (cause diarrhoea), sleeping early (i just can’t), Eating mostly veggies and carbs (i feel better when i eat meat), Long walks ( i can walk much more than i used to, but to say that’s it’s a slow months-year long gradual process is an understatement).

And there it is. Everything i do to function somewhat normally (or at least avoid PEM crashes). I’ll add more to this in case I find that I’ve missed anything.

Hope this helps. In Sickness, Health;
Kritarth