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 Myalgic Encephalomyelitis.
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, smells and movement.
Imagine Your Day Goes Something Like This...
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.
So you waddle to the bathroom, struggle to pull your pants down and up again and you have to steady yourself on nearby appliances or cabinets to get back up off the loo. Then you brush your teeth, you might even have to sit back down as you become more and more breathless.
Back to bed. Rest.
You wake up an hour later. Oops! Time for medication and breakfast. You're glad you remembered to prepare it all the night before because you're too exhausted and confused to deal with any of it now. You're 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 desk 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. You manage 2 sets of the alphabet and you're utterly exhausted! Your arms are shaking. 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, arms supported with cushions, you chat with family or friends online and try to figure out why you're so out of it today.
Accumulating Debt, Energy Debt
You remember 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, dragging you deeper and deeper into the energy deficit. Making your symptoms flare up sooner and sooner with each movement.
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!
An Uncontrollable Environment
While resting, 2 different neighbours decided to play music loud enough for your sensitive ears to hear both in tandem. Sensory overload within seconds!
Noise-cancelling 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 to stand there and stir or the strength to keep your arm up while you stir.
You decide it's unsafe to use the stove today, so you'll eat the leftovers cold, just like you did yesterday. A microwave oven would be useful about now. Cold food in winter is not ideal.
Oh man, digestion is kicking in again, it's time for another rest...
That was just one morning. There's still the rest of the afternoon, and dinner to deal with. There's no way you can think about other chores or grocery shopping or entertaining a visitor...
Surviving The Moment
You're just trying to get through each moment, doing the best you can to accomplish the tasks that are vital to survival. And you try to stay connected to the world outside too, just to keep the loneliness and boredom at bay.
When you're dealing with a constant onslaught of relentless and debilitating symptoms, day in and day out, your focus becomes survival. Moment to moment. The rest is extra. The rest can wait.
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