I made the bed, I made the bed!

First hotel date night – Me alone with my wheelchair
14 July 2017
Scorchio! MS stands for Multiple Sclerosis. Or Maddeningly Slow. Or Must-have Shade
1 September 2017

Well that’s two hours I’ll never get back. One sheet, four pillowcases, one duvet cover. 120 minutes to change the sheets. Then 30 minutes motionless to recover. Still aching a few hours later.
I know, I know, you can make bloke jokes about how crap we are anyway, or how if we just practised more, our times might come creeping down. And then we could try to identify the dishwasher in the kitchen, and maybe fill it properly. So funny.

It’s not that of course. It’s the bloody multiple sclerosis thing. That’s what’s laughing at me right now. What a ridiculous thought, even trying it. People run a marathon in just over two hours. Maybe I should do a sponsored ‘sheet-athon’.

Once upon a time, and indeed not so many years ago, that was one of my many chores around the house. I cooked, I cleaned, I ironed, I shopped. I have a decent enough job – and incredibly supportive employers to boot. But Mrs W was always the stoopid hours, high-flying career-a-holic. Home she would come, slump on the sofa, and raise a hand signalling [insert full wine glass here]. I was happy to oblige, and only too proud to run after the catch of a lifetime.

Even after I was finally diagnosed a decade ago, I was happy to bear the brunt of the housework, especially as son number one had appeared on the scene by then and there was plenty more to keep my lovely wife occupied.

But all the while, those chores got harder to face, and I needed recovery time after the simplest of tasks. We have been prosperous enough to farm out the ironing and cleaning, and the advent of home delivery for our groceries was most welcome. (I do miss a good browse in a supermarket though). Me cooking a simple fresh meal is a rare – and dangerous – feat for me to tackle now, and my beloved recipe books – once a Christmas present staple – sit lonely on the shelf and gathering dust.

I still put the occasional clothes wash on – carrying the bundle precariously on my walker. But then it’s down to Mrs W to empty the machine and hang the washing. I feel like I’m reverting to 1950’s man. Make a coffee? Only if I sit next to the coffee machine drinking it. To carry it anywhere with said walker would be a messy disaster. Answer the phone? Only if it happens to be right next to me when it rings.Best rely on my family for pretty much everything. Fetch my slippers, light my pipe? Iron my newspaper then! Best not that last one as I struggle to turn the flimsy pages nowadays. Bah…

So every so naive often, I give in to the guilt I feel at being the hopeless, demanding one and try something wild, like changing the sheets. Or chopping some vegetables. And I always regret it. It’s not that life is too short. It’s that the chore is too long, and often painful. I am better focusing on what I’m good at. Talking  to the boys, reading to them, laughing with them. Pretending to understand the dab phenomenon. Listening to them with feigned fascination about their zombie horde video games and their massive milestone of 40 YouTube followers. Loving and appreciating my wife. Not sure I’m great at that last one. Must try harder.

It’s a guilt thing, a feeling of failure and spiralling loss of control. Hard to shift, but I must.

4 Comments

  1. Patrick says:

    Yes. I know only too well the feelng of no longer being to do even the simplest of jobs around the house without creating another dozen that someone else (The Wife) has to do after you. It is all terribly frustrating.

    My horizons are shrinking year on year but I do manage to retain some semblense of independence. Oh well I must bumble along as well as possible for as long as possible.

  2. Indeed Patrick. Bumbling is an art form we are continually refining as our MS toys with us. Such a joy… Must go bumble…

  3. John Wildy says:

    Brutally honest blog Mark, and I'm sure the guilt is as horrible as any other part of the illness, but the small blessings are so important too. I still have such find memories of my uncle reading to me and making up stories too, these will be remembered by your boys in the decades to come.

  4. Thanks John. Yup, the reading still goes on every single night. 11yo doesn't find me uncool just yet… Dreading that day!

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