A Day in The Life of ME
It might surprise you how often people with chronic illness are asked what they do with all the free time they have at home. I think many healthy people have no idea how difficult it is to deal with unrelenting symptoms on a daily basis. I hope to shed some light on this by sharing with you what a day in the life of Severe ME is like.
This post was originally written as a first person account of my day on 3 Feb 2016,
during my second year of being housebound with ME/CFS.
Edited and published here on 4 Feb 2018
Have you ever woken up in the morning feeling more exhausted than when you went to sleep the night before? You know, that kind of exhaustion when you are so drained that you can't keep your watering eyes open any longer and nod off at almost every breath. Your limbs are heavy and you're too deflated to even get dressed into your pyjamas, so you just give in and let the sleep take over.
This is life with ME. A healthy person, after a good night's sleep (and they may even need a few extra hours), would feel rested and replenished, able to confront what the next day ahead might bring, but the ME patient doesn't recover. We wake up with a deficit - of energy, of strength, of cognitive function and an increase in sensitivity - to light, touch, sound and movement.
In the morning, you're lying in bed trying to wake up your numb, almost paralysed limbs so you can do your bathroom business (just loo and teeth, you know you have no energy for anything else anyway). When you're finally up, you realise just how stiff and sore you are, as if you've done an energetic dance workout the night before, but you know you haven't... You can't quite fathom why you'd be paying for something you didn't do.
Back to bed. Rest.
You wake up an hour later. Oops! Time for medication and breakfast. You're glad you remembered to prepare it the night before and so grateful for the app that reminded you to take your meds - exactly which ones and when!
Digestion takes more energy out of you, so you're back in bed, so tired. Body aching. You feel like you might have a fever, even your skin hurts, but you know it's not a proper fever, this is just another one of your regular symptoms: the phantom fever. Your temperature might actually be lower than normal, but your body responds as if it's burning up.
It's nice and sunny now, so you decide to sit at the table in the sunlight and do some writing. This is to keep your hands mobile and build that muscle memory you've lost after months of inactivity. Your arms are stiff and heavy. 2 sets of the alphabet later and you're utterly exhausted! Your legs are even aching now and you have shooting pains in your hips. Time for bed again.
Propped up to try avoid sleeping in the day, you chat with family or friends online and try to figure out why you're so out of it today. Oh right, you had a shower yesterday! The only thing you did yesterday other than resting in bed, because you were still recovering from the dishes and cooking you did on the days before, while you should have been recovering from your trip to church on Sunday...
See, the exertion intolerance accumulates.
So you had a shower. Everybody knows what an incredible workout that is! All that standing and scrubbing and the sensory effect of the water hitting your skin - feels like somebody's poking you all over with a fork. Makes sense that you'd be bowled over almost 24 hours later!
While resting, 2 different neighbours decided to play music loud enough for your sensitive ears to hear both in tandem. Sensory overload within seconds!
Headphones on. World OFF.
Your eyes are burning now too, even though your screen is dimmed right down, which is quite usual by now, it is never more than 50% lit. As you lie there on your bed, you realise how sore your shoulders are, probably from washing your hair in the shower.
Lunchtime comes and you're so grateful for leftovers you can just heat up on the stove, if you have the energy, else you'll eat them cold like you did yesterday. A microwave oven would be useful about now. Cold food in winter is not ideal.
Despite the payback and cold food, you're quite happy to finally be wearing clean pyjamas again! You'd been waiting for your next shower to wear them. Oh man, digestion is kicking in again, it's time for another rest.
How To Cope With Severe ME
You may find some of my other posts helpful if you are struggling with Severe ME: