I Hope This Helps You Understand My Energy Limitations
Struggling to explain to your friends and family --not to mention understand for yourself -- why your energy is so unpredictable after treatment? Read a fellow chronic patient’s experience below and see if it rings any bells.
"How are you doing these days Nikhil?"
It'd been literally half a year since I'd seen my med student buddies and I had to do the rounds. This question came up a lot.
"So yeah I'm actually good!" I'd always start, smiling and gesturing wildly so as not to worry anyone. "In fact, my cancer's at a point now where it can't come back!" And to this, I'd get an emphatic “Congrats, dude!”, a shout of “Yipee,” a toast and the occasional pat on the back.
"But yeah otherwise, treatment for the graft versus host disease continues. And I mean though the skin is slowly getting better, the major thing left is the cramping, which can suck." The faces become more sallow as I say this. "But hey, they're getting better too!" I lied, and again they'd celebrate, albeit slightly less enthusiastically.
What could I tell them? How could I explain to them the truth of how it affects every single aspect of my life? Even in this crowd of young, caring people, there was no easy way of really telling them what life after cancer really meant.
I guess you could say that lambasting about the constant frustration and the looming anxiety of something you couldn't control for half an hour would break the social convention of small talk. But in truth, there really isn't an easy way to explain how living with a chronic condition really impacts your life and mind.
Unlike what most friends think-- that frustration, that anxiety, the physical effects of a chronic illness-- that's only half of the story. Chronic diseases, mental illnesses, even things like stress affect our very mindset, they play a factor in every tiny decision we make and it was only after reading this amazing article that I feel I'm properly able to explain that now.
Picture yourself having to walk around all day with 12 and only 12 spoons. Each little action you take - you get one confiscated. Every single action.
Waking up and hopping out of bed? That'll be one spoon. Finding the will to get up and brush your teeth: one more. Doing other... business... in the bathroom and then showering: another one. Putting on your clothes, eating breakfast and going out for the day's business: two more, please.
We've only just left the house, and we're down 5 or 6 spoons already!
You may think I'm exaggerating, but that's life for many people; people with cystic fibrosis, people with heart failure or latent blood cancers, people with horrible cramps, we all find some... most... even all of those tasks tiring. Right now, I'm scared of even getting up from a seated/lying position after 5pm in fear of my whole body having EVERY SINGLE muscle contract at once, leaving me dazed and staggering, even gasping wildly for breath.
Each. And. Every. Day.
Then imagine having to account for and plan out everything around not only your medications and appointments over the days/weeks/months to come, but also for how many "spoons" you have left, each day. Imagine having to pass up on doing things that are good for your career, good for you, or the things you love because you simply don't have, or can't afford the energy to do so.
If you wear yourself out too much, you'll pay by having a few less spoons to use the next day. That's IF you haven't worn yourself out before you've even had the choice to go and have fun. Yes - you DO pay if you go over the limit. Harshly.
And no... you don't get a break from it. Ever.
It's scary. I know.
But as the lady who invented this spoon theory said in her original article, this can also be seen as a "blessing". I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”. And if you're lucky enough to have a friend or family member or patient who does have such an illness, if they're with you, remember that they chose to spend that time with YOU.
I hope this gives you a glimpse of life as a chronic patient.
I hope this allows you to forgive grievances anyone with an illness may have committed - whether it be them having to bail at the last moment on a meeting, skipping or else refusing to take medications because they honestly forgot or are sick of taking them, or them just simply pouring their heart out and letting people know how it feels.
Remember - these things take a huge emotional toll too. It's not easy hearing "you look good" , or "you look better" when you feel like the complete opposite. It's not easy having to explain everything, often lying about your health just to make others happy too. It sucks that you can't do what you want to, when you want to, when so many around you can. The frustration of this thing never leaves you, either...
And finally, I hope this lets you understand those people in your lives who do have extra issues always looming over them. And I hope this urges you to go and ask them if they're OK, and equipts you to maybe help them.
Because who knows. Someone you love, or someone you care, or are caring for, may need your help.
Do you struggle with sustaining energy post-treatment? What do you do to manage it on a daily basis? Share in the comments below!
Nikhil is an AML survivor, 2 time bone marrow transplant recipient, medical student, founder of a social enterprise and author of his blog, Musings of a Med Student Patient.