Well it’s that time of year again; time for my annual day in my life post for ME Awareness Day. I’m actually writing this 3 days prior to May 12th this year which is somewhat late for me, but 2022 has been proving quite a challenging year thus far so that’s the way it is.

I wake around 07:50am, 10 minutes before my alarm sounds, but just as the wake up light starts coming on (I have one of those sunrise/sunset alarm clocks now which I find helps with waking/going off to sleep). I feel unrefreshed, as though I haven’t slept as much as I have. I reach for the bed ladder and pull myself into a sitting position, slowly shuffling back against the pillows and assessing the pain levels. I reach for my slipper socks at the side of my bed and slip them onto my feet before having a long drink of water from the cup on my bedside table. Then slide my feet round and down so I’m sitting on the edge of the bed, I sit that way for a few seconds making sure I’m not about to get too dizzy before reaching for my cardi-gown (it’s a cross between a cardigan and a dressing gown) and slipping it on.

At 8am I turn the alarm off, get up from the bed and slowly make my way downstairs, a little unsteadily, holding on to the rail for support. I use the bathroom, then get myself a bowl of cereal and drink of squash before seating myself in the riser recliner chair to eat breakfast and take my medication.

I have a short rest after breakfast, before getting a pair of compression socks from the suitcase in the utility room (my downstairs, mini wardrobe) and letting my Dad put them on me. I rest for a little longer, usually until about 9am before getting up and going to the utility room to choose clothes from the small suitcase in there. I then go to the bathroom where my Mum helps me wash and dress, before leaving me to clean my teeth. I slowly make my way back into the living room where I do a little bit of physiotherapy; 6 strengthening exercises, before having another rest.

By now it’s usually 10am, I spend most of the morning trying to do little bits of medical or life admin from the recliner chair, getting up and moving a little once an hour, watching a bit of TV or doing a bit of knitting; all depending how my concentration is.

Around 12:30pm my Dad comes in from work and will get me a packet of crisps before getting me lunch. I take some more medication just after lunch. The afternoon is often spent chatting to Mum & Dad if they’re around, or if my legs and energy levels allow (and the weather is nice) I’ll sit outside in the garden chatting to them or my neighbours instead.

Come 3pm and I’m usually starting to flag, the left side of my back is usually starting to ache as well, I have help getting back into my pyjamas and then either sit in the recliner chair or lie down out in the garden until around 4pm. I’m usually quieter during this time, observing what is going on and listening to conversation rather than joining in quite as much.

At 5:30pm I take more medication and sit listening as my Dad cooks the dinner, which I then eat while sat in the recliner chair in the living room. The evening is usually spent curled up on the recliner, resting, watching TV or reading if it’s quiet. I take the final lot of medication for the day an hour before getting ready for bed.

Around 9:30pm I am usually ready to start getting ready for bed; I move a little slower and am unsteadier on my feet than I have been during the day, but I get to the bathroom and get myself ready for bed before my Dad helps me up the stairs. My Dad usually closes my curtains for me as I sit myself on the bed before getting my legs up onto it too. He removes my compression socks before leaving me to settle myself into bed.

I write in my journal, switch my alarm clock to “sunset” mode and sit and read until the light is too dim to do so. At that point I take my glasses off and put them in the case before snuggling down to find the least painful position in order to try and fall asleep

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 currently do each week day at least, unless the day is a bad one. This year’s average day has been a difficult one to write because I’m not in my usual situation; I’m still recovering from having emergency surgery to fit a ureteric stent two weeks ago, when I also had a severe kidney infection.

Therefore looking back at last year’s post is actually quite difficult; I was managing so much more back then, and if I had written this post just over two weeks ago it would look very different to what it does today because I was managing similar amounts of activity to what I was last year and needing a lot less help with washing/dressing etc. However the severe infection, combined with the 9+ hour wait in A&E and emergency surgery have wiped out all that. In fact it is only today that I have added the tiny amount of physiotherapy back into my day; I’m hoping it will be part of my average day again and that I will be able to start building it up again too, but only time will tell.

So although it is rather disheartening to see things have declined so much since last year, there are some very good reasons for that which aren’t solely down to the ME, hEDS or PoTS – I’m hopeful things will pick up as I continue to recover from the events of the last two weeks (although further surgery will be needed at a later date, and I don’t know how that will affect me either).

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.”

As always let me know your thoughts and comments either on Twitter @SmilingClare, Facebook Smiling Clare: A Life Within An Illness or add a comment to this post and I’ll reply when I’m able!

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