for those who know me well, I used to be like the famous battery advertisement (was it duracell or eveready?) - I could just go on and on. I was never too tired for anything. I could push myself to the limit, and when I was at my absolute limit, I could recharge a bit and keep going for some more. kinda like the latest phones that advertise a few hours of battery life on 5 minutes of charge, from their crazy high power quick chargers. there was a time in 2002 where I kept going for 68 hours without sleep, and was back on my feet after like a 2 hour nap... and another in 2007 where I did something like 32 hours followed by a 4 hour nap and then kept going for another 20 hours after that. most of my late teens were spent being up all night and napping through the day to keep going. there's this one episode I can't forget from 2001, when I fell asleep during a statistics lecture, and somehow kept writing was the professor (prof. Fernandes) was saying in my sleep. my friends claim I was so fast asleep I was snoring. the professor called my name, a friend shook me awake, and the professor asked me something she had just stated to the class. I was quite blank, until I looked down at my own notebook and saw I had scrawled the answer! I read it out and she was flabbergasted. she thought one of my friends had prompted me, but I showed her my notebook and she was forced to believe me. that's the sort of life I used to lead. even as recently as 2017, I once rode overnight to Goa after a whole day's work in office - I remember the ride to office with my fully loaded panniers as they touched a car while filtering in rush hour traffic, and then a friend clicked a photo of me before I rode off from the parking lot at sunset. after I reached my friend's place at Goa at noon (yes, I did take a nap on the way, especially after the sun rose and the heat really started getting to me), and I literally had a shower and was going to take a proper nap, when my friend was like "did you ride to goa to sleep?" and dragged me out for lunch, followed by drinks at one beach, then a swim at another, dinner, and fianlly a DJ/private party that went on till about 1am and I was in bed at 2am. that's the sort of thing I could do not too long ago.
and now, it's different.
if I over exert over a period of a few hours and sit on the couch, I might be in a position where I'm too tired to even get up to drink water, eat or sleep. if I over exert and go to bed, I might be in a position where I am unable to get out of bed the next morning - or even the next afternoon. there has even been a time when I was too tired to get out of bed in the evening, and literally got out at 8pm!
worst of all, there are no warning signs - I just have to anticipate it. I have been out cycling for 35km a couple of times - it doesn't feel weird while I'm out and about (other than the actual reduction of my physical capabilities after the last year and a half of minimal exercise), I get home, put the bike in the shed, wifey brings me a glass or two of water, I sit msyelf down on the couch - and that's it. I can't move for the next few hours. sometimes even 6 hours. my brain's awake and active, which is terrible when coupled with the entertainment laptop hooked up to the tv (and of course and endless list of things I could "get done") while seated there in my half-zombie state.
it's such a regular phenomenon that I've actually identified missing gaps of unaccounted time (literally hours) where I know where I was, what I was trying to do, but can't really match the total elapsed time with what I achieved. I was obviously better off going to bed... but I didn't. because it felt like I couldn't.
and then there's the mornings. my alarm goes off at 8:13am, labelled "wake up". I have practically never woken up with it. I do wake up physically and either dismiss or snooze it. if I have enough energy i change the snooze time from the default 5 minutes to a more realistic (in my head) time before snoozing. I have tried keeping the phone out of arms reach, and on such days, depending on my energy levels I might get out and reach it and drag it back to my bedside before dismissing/snoozing it, or on bad days I just let it ring out for half an hour or however it takes.
my next alarm goes off at 9:15am on weekdays, appropriately labeled "start work". this alarm has varying levels of success, although of late it's not been looking too good. some days I've managed to snooze it at an appropriate point where the subsequent ring has caught me at a time when I've had the right amount of energy to get out of bed. some days I've forced myself out of bed even though I felt like I wasn't ready for it, and 10 seconds, a minute, or sometimes even 2 minutes later (ie after I've pee'd) I have gotten back into bed.
My mornings are so fuzzy I don't really have any data about which strategy works better or worse, and certainly no data about what works so badly it needs to be abandoned altogether.
if all has gone well I'm out of bed and somewhat ready to tackle the day. if it hasn't, I'm back in bed. this is where the real disaster begins to unfold. over time, my fatigue from the previous day seems to overlap with my lack of energy from being in bed for so long. I get thirsty but don't have the energy to grab a glass of water from the bedside table. or even worse, I do, and the bottle is empty because I was so "barely awake" when I got out of bed the previous morning I forgot to take the empty bottle down with me - and of course nodbody is in the bedroom during the day so if it's skipped in the morning nobody will notice. even later, I'll be so hungry I don't have the energy to get out of bed.
sometimes I'll be fast asleep for hours, other times I'll be half-awake, lucid dreaming, and there are days when I'll literally be wide awake, alert, and able to have a whole (albeit brief) conversation with Shruti across rooms. sometimes I'll have the energy to check my phone, see messages from work, see work meetings/appointments (and yes, over the last year or so, I've actually had more medical appointments than work meetings!). sometimes I'll have the energy to message my manager that I need to take the day or a few hours off work.
on some days, I will appeal to Shruti to help me out of bed, and she'll physically get me to sitting, help me get my feet to the ground, help me to my feet, take me to the bathroom or down the stairs.
on other days, I won't even have the energy to call out for help.
she's tried getting me out of bed when I'm not ready and I'll literally fall back into bed as soon as she's not helping me up, or sometimes I'll beg her to let go of me and I'll get back into bed. there was even last tuesday when she physically took me to my work desk and I sleepwalked through the next few hours until I had the energy to get out of my chair and back into bed.
it's the sort of problem that has me completely flummoxed - I don't know what will work, or what won't, until it does or doesn't.
as a result, I've begun shying away from challenges - or taking up challenges fully anticipating completely disruptive setbacks.
I've stopped hiking.
I've (almost) stopped cycling.
I've almost stopped sailing.
Even the vacations we've gone for have had nap times scheduled.
If I had to explain all of this to 40-year old me, I'd have thought it was some sort of joke (or horror story, more likely).
Oh and there's the accompanying brain fog. But that's another long story.
Somehow, I feel relieved to finally get this typed out.
Based on all the medical advice I've been given, chronic fatigue syndrome doesn't need to be experienced the way I currently am experiencing it. There is a path to living with it which isn't disruptive (or even noticeable to others). It's just that all my attempts so far have not succeeded for extended periods of time.
But there is hope. And I'm counting on it.
Right. Off to bed now.
