A Day in The Life of ME

A day in the life of ME BLOG

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.

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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.

Imagine...

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.

Rest...

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.

A day in the life of ME CFS

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  • V.J. Knutson says:

    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.

    • Chronically Hopeful says:

      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!

    • Chronically Hopeful says:

      Thanks, Caz!
      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

  • Emma (Not Just Tired) says:

    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.

    • Chronically Hopeful says:

      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.🌸

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