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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I am always taken aback when people ask me what I do all day – it demonstrates how little they know about ME. Those first two years were completely about survival, as you so aptly describe. I am now four years in and am able to be out of bed for longer periods of time – on the good days – but there are still days where it takes hours to just make that first move in the morning. Funny, what you say about digesting – it does make me tired. I always have to lie down after eating. Be well.
Absolutely – all about survival.
I think that healthy people can’t really understand it. I feel a level of exhaustion and weakness that I never imagined possible. I try to get that across in my writing, but I’m not sure that healthy people could ever really grasp what we go through.
I hope that you will continue to see this improvement – today is one of those days for me. My legs aren’t too happy, so I’m resting in bed. But it’s still a huge improvement from just a year ago!
Thank you for stopping by. I hope you have a lovely week. x
You’ve captured this so well, especially sensory overload & general exhaustion. Must admit I’d never really thought of the energy your body needs when it comes to digestion, so that’s an interesting point. I’m also not liking the cold dinners when I’m too exhausted & my body hurts too much to cook a hot meal either. Great post!
Glad the picture is clear. I often wonder if what I’m trying to say is really coming across correctly. I am so grateful for my sister who sorts my meals for me now.
Digestion is really hard on me some days. Yesterday I literally keeled over after lunch!
I ate on the sofa and afterwards I just toppled over and fell into a deep sleep for a couple of hours, I just couldn’t even stay upright or talk. My sister covered me in blankets and I just let go. My belly was talking something terrible too, could tell it wasn’t happy to be digesting that meal lol…
I do find I have more trouble digesting lunch than dinner. I think my body generally tends to improve in the evenings. Do you also find you “wake up” in the evenings?
Hope your week is positive and restful. Hugs
Great post capturing the reality of what it feels like to live with ME. It’s so hard to explain to people just how tough it is just to get through the day.
It sure is hard to explain, but I often think that many healthy people won’t get it no matter how much we explain. It won’t stop me from trying though! xx
Perfectly articulated! The time lag between activity and deep pain sometimes mystifies me…like what did I do to my (insert body part) and you may think back 48 hours and remember. So odd. Thank you for taking the time to a peek into our lives.?
Thanks, Mishka. It really is so odd, isn’t it?
That delay is so baffling at times. I’ve sometimes just given up on trying to figure out what caused it and just decided it must be a random flare, without cause, because in reality it could have been anything… a feeling, a sound, an activity, something I ate. Today, yesterday, days ago – who knows?! haha…
Hope you are doing okay. Hugs
I’m giggling ? So very true! And thank you, you too!?
Hey I’m 13 and have chronic headpain. I like finding sights like this that give hope and support.
Hi Jemma, thank you for the lovely comment. Glad you enjoyed my site. I’m sorry to hear about your chronic pain. Headaches are terrible. I hope you have a good care plan to help you through it.
Really well written, vivid imagery and lets me put myself in your shoes, however brief. It really sounds exhausting just to live. I hope you get a few good days soon xx
It’s amazing how exhausting chronic illness can be. I’ve often heard, “You don’t get it…until you get it.” Hope today is a low pain day for you! Love your blog!
What we take for granted. Your blog lets people know they are not away and the rest of us a reality check.
Thank you so much, Amelia.
I am happy if healthy people can understand the gravity of this illness from my posts, it might help to reduce the stigma and misinformation out there.
And as you say, letting other patients know they are not alone in their struggles.
I love the name of your blog by the way… It’s a lesson that took me a long time to learn: You can always start again!
Wishing you a wonderful week ahead.