Well it’s ME Awareness Day 2019 and as is tradition I’m writing about what it’s like to spend a day in my life with moderate ME.
I wake up at 8 am to the sound of my alarm, stretch out and shut the thing up so it doesn’t get any louder! I feel unrefreshed, as if I haven’t slept as much as I have. I stretch out assessing which joints and muscles hurt most today in order to decide just how I should move so I don’t exacerbate the pain. I sit myself up in bed and put my glasses on, then slowly swivel myself round so I’m sitting on the edge of the bed.
From there I reach out and grab my dressing gown, slipping it on whilst sat on the edge of the bed. Letting my body adjust to having my feet down and sitting up. I go downstairs and get myself a bowl of cereal and a drink before curling myself up in my armchair in the living room, eating breakfast before taking my morning pills.
I rest for a bit after breakfast before going upstairs to get some clothes ready to get dressed. I sit on my bed getting the clothes out of the drawers, only standing to get things out of the wardrobe when necessary. Then I make my way slowly back downstairs, before going to the bathroom to wash and dress. This is mostly done sitting down atop the closed lid of the toilet.
I then sit down and rest for a little while, the simple act of dressing having exhausted me. I’ll usually catch up on a couple of easy to follow TV shows while my Dad is out at work, this is followed by a bit of a rest before I do something crafty – card making, knitting or crochet usually- for a little while.
I have another rest before getting myself a sandwich or something similar for lunch which is eaten in the living room whilst seated in my armchair.
Afternoon’s are one of those things which these days are difficult to pin down an average of. I suppose more often than not they’re spent chatting with my parents and resting, not achieving a great deal. Mainly because the less average ones are spent venturing out in my wheelchair to shops while it is quieter than normal, and as a result I’m not able to do a lot on the other afternoons. And of course there are the days I have medical appointments which I always try and book in the afternoons because it is my ‘better’ part of the day.
Whatever happens in the afternoon by five o’clock I am at the very least beginning to flag. The exhaustion and pain levels are increasing and in recent times the light headedness that comes with feeling faint puts in more of an appearance than it has throughout the day.
I’ll get changed into my pyjamas, often with help from one of my parents, before curling up in the kitchen armchair and reading the recipe instructions for dinner to my Dad as he cooks – that’s about as useful as I get when it comes to cooking at the moment, and even then I often miss things out by mistake!
Dinner is eaten in the living room, tablets taken and then I settle down in my armchair listening to what’s going on around me, occasionally joining in, and sometimes knitting or crocheting a little bit more if my hands and concentration allow.
I take my last med of the night at 8:30pm, and by 10pm I am more than ready to get ready for bed. I shuffle off to the bathroom before dragging myself up the stairs with one of my parents following and/or supporting me as by this time it is a struggle to lift my foot high enough to get up each step.
I settle down in bed, write in my journal then turn out the light before finding the most comfortable position possible and wait for sleep to claim me.
As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I think I can handle with no negative effects on my health. Anything more and I pay the next day.
Looking back on last year’s post it’s heartening to see things have improved a little since then, although the dizziness is the worst it’s been for a while, and I’m still not in the best of health, there have been small improvements over the past 12 months and that is something to be positive about.
Some things haven’t changed since last time though, so I shall quote from my post back then:
“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”