I’m posting this a lot later than usual – time seems to have disappeared this year despite my not actually doing a lot – but here’s my annual day in my life post:
My alarm wakes me at 8:25am, if my dog Dolly hasn’t woken me already, I feel unrefreshed even if I have managed to sleep a good few hours despite the pain. I slowly sit myself up in bed, sometimes using the electric bed adjustment, assessing the pain and dizziness as I go.
Once up I let Dolly out before making my way to my kitchen to do our breakfasts – biscuits & fresh water for Dolly, and cereal and a cup of tea (made with a hot water dispenser) for me. I take my time having breakfast, cup of tea & morning medications before going to get dressed in my bedroom, sitting on the bed to do as much of it as possible. I go to the bathroom and do my teeth and wash my face.
I then brush Dolly before my Mum arrives to help me with some bits, this usually includes a short walk on my crutches for physiotherapy and helping me cook a meal for lunch – with a rest in between.
I’ll have a rest after eating lunch & taking my lunchtime medications before I sit on my perching stool and wash up. I then have another rest for a while before doing some kind of activity- usually card making, knitting or a little bit of housework; a little bit of hoovering (just a small space, not the whole flat), dusting or putting shopping away depending on the day.
Then it’s time for another longer rest – usually a few hours, where I’ll put something simple to follow on the TV for company with Dolly curled up next to me on the sofa – before my Dad arrives to take Dolly out for a longer walk, help me remove my compression socks and get a few other things ready for bed – like night time medications.
Once he leaves I lock up for the night & settle on the sofa with a hot drink and something on the TV & take my last lots of medications for the day. I usually give Dolly a load of fuss too as she tends to snuggle up more in the evenings.
Later on I get the last few things ready for bed such as a drink of water, I get the crockery out ready for the next morning, let Dolly out for her last wee & get ready for bed.
I settle myself in bed, write in my journal for the day, take my final medication of the day & snuggle down hoping to sleep.
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 still working out what I can manage on an average day in terms of living on my own – housework, admin etc – and also because despite it being a year on from my surgery I am still recovering from the knock it caused to my other conditions.
Looking back at last year’s post is actually quite strange, in some way it seems like a lifetime ago that I was preparing to move and have major surgery but in others it seems like just yesterday. It has been a difficult year of adjusting to a new normal, lots of hospital appointments, lots of medical admin and living on my own.
It’s heartening to see how much things have improved since last year; at the time I didn’t expect to be managing on my own in my flat as well as I do – even with help – but here I am. I was also expecting major surgery to be a lot harder on my body than it was, I defied the medics expectations and not only did my body handle the surgery better than expected, I was discharged the following day; not after a week like I was told. That’s not to say it hasn’t been tough on my body and particularly on my other conditions – I’d be lying if I said it hasn’t affected them – but it’s not been as severe as I was warned about, it has however lasted longer and I think I’ve got used to a lower baseline as a result (it’s hard to judge as obviously my pre-surgery baseline to compare to is when I was still living with my parents). In particular I have found my joints to be more unstable after the 6 weeks bed rest post-op, only doing short slow walks round the communal garden each day to help prevent blood clots, my muscles de-conditioned and it has taken months to be able to get back to doing the same level of physiotherapy that I was doing before.
Some things haven’t changed since last time I wrote a Day in my Life post 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.”
This is particularly true when things are proving especially tough, like after last year’s surgery and my first social outings that followed on after that.
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!