It’s ironic that, with the first blog due today (Monday) for RA blog week, I’ve been in a flare all weekend and am now trying to type furiously at the almost final hour… 10pm is still Monday, right?
I had a lovely clear weekend planned, I was a even cat-sitting at a friends with a sofa, Internet etc, I was sorted! And then it hit, I’ve barely had the energy to take my meds, unfortunately we all know those days! So I’m literally deciding as I write, do I cover a day like today, or a slightly more ‘normal’ day?
To be honest I could sum up today in a couple of words, sleep, pain, sleep, so let’s skip that and look at a slightly more average day. I’m not sure three word blogs are quite the thing 🙂
My first thought when I saw the topic “A Day in my Life” was how short my days generally are – at least the functioning, thinking, moving part of the day. Someone online mentioned a three hour window recently, and it immediately resonated with me. It takes me an hour or so to come round in the mornings, I was never an early bird but now I’ve made slow mornings an art form!
So let’s say I wake at 10am, by 11am after a coffee or two I might be ready to face the shower. This does help ease the aches, the warm water always soothes even the sorest joints for a brief while. Then there’s getting dried (awkward when only one arm is moving properly and you can’t bend), sitting down to rest, then getting dressed, sitting down to rest (I’m not exaggerating here, the process exhausts me), and that’s without dealing with my hair. On a lot of days it just goes up wet, blow drying can seem just too much.
So hopefully by 12 noon I’m in one piece and ready to face the day. I say hopefully because on worse days I’ve been known to hit this point and just stop – my body says no.
So this is start of the ‘three hour window’, I might go out, meet a friend for lunch or coffee, see the physio or GP or maybe go to a store for a book or a little food shopping, small things I know I can do without walking too far or wearing myself out. Some days I make four hours or so if I’m sitting chatting with friends, but five hours is my absolute max even on a very good day. By that point I will physically droop. I have to make sure to leave with enough energy to get home and get into bed. Of course if a joint is really flaring this can shorten things dramatically, pain is a great incentive to get home!
It’s so, so hard to explain how doing what most people would see as a day of leisure leaves me on the floor. I also really struggle to do two of these days in a row, so I try to plan hospital, physio and GP appointments as well as coffee or lunch on alternate days, so I get a day at home, then a day when I’m out.
There is however a big upside to this. Because I’ve got used to this window I have to work within, I do make sure I prioritise what I spend my time on. So I plan around the medical appointments, so I can see friends, or family, sit somewhere with a nice view, enjoy the sunshine or just have a really good coffee while reading. That leaves me the evenings when I’m resting for writing if I’m in the mood. I am probably more careful about how I spend my time now that at any other point in my life, and that’s got to be a good thing!
4 thoughts on “A Day in my life… #RABlog week #1”
Excellent!! My average days are 5 hours with really great days at 6-7 hours. But all of my mornings are the same as you describe. I can sit at the dining table for a couple of hours before my body catches up with my mind.
LikeLiked by 1 person
It’s a slow process getting going isn’t it? Frustrating but we do what we do to function xxx
I sometimes think it of myself like a giant train. I once read it takes 25% of any trip to get a train up to speed. So regardless if a train is running 1000 miles it takes 255 of all the energy just to get it moving. Wow,, A metaphor “the RA train” if so I am on a slow freight and it takes 50% energy just to get going.
Loved your blog Denise. I hope the flare fades away.
LikeLiked by 1 person
A train is a great analogy Rick, thank you xc