It occurred to me yesterday that living with myelopathy is like a compendium of games.
The day usually starts with The Cube. How many attempts will it take to get the lid off the coffee jar? The game requires patience and concentration. I focus on keeping my grip tight. I need the audience (my family) to be quiet; a casual comment like good morning and coffee granules are crunched underfoot for days. Oh dear I have to use my ‘simplify’; “Kitty! Would you fill the milk jug for me.” Did I put sweetener in? I did. Did I? I ‘ve done years of trial runs but still the game challenges me. People may presume that being at home my day drags but no. Half an hour goes by and I’ve yet to get the coffee lid back on the jar. I’m so busy my coffee is cold. God I love it when someone makes me a cuppa.
Much of the day is spent playing Cluedo. Is my iPod upstairs in the bedroom or in the kitchen with Caitlan? Is my phone in the front room with Paddy? My tablets are definately in the bedroom with my husband. My book? That’s in the garden. I get my cane, take a step down onto the patio, holding the grab rail and then shuffle. My right leg doesn’t lift without considerable effort and I can’t afford to fall over again. Whoosh it’s the afternoon and I’ve done nothing but boy do I feel tired.
Scaletrix. I need the loo. In the chair lift I settle. Finger on the up button. Staying on the track isn’t the problem, it’s maintaining finger pressure otherwise I stop prematurely and beep. It’s not as fast a ride as I’d like and the ride down is a bit hairy – it’s the vertigo that does it.
Twister is the most physical. I can’t bend. Crouching down to the fridge I get on all fours to rise. Well that worked yesterday. John! Patrick! Caitlan! Help! I can’t get up. Rolling off the sofa I’m on all fours again, a hand on the coffee table to leverage myself up – oops – here I go balancing precariously, doing a reverse mexican wave. I put a hand on the door to steady me. Concentrate. Slowly…put…one leg…in front of the other. Ahh. Ahh. Ahh. Bugger that spasm was bad. Why is my right leg a foot behind me. It’s so heavy. It’s not moving. I think I’ll have to sit the next round out. Maybe a lay down. Gosh it’s tea time.
I think Articulate is the most frustrating. Verbalising is increasingly challenging, the words I want are rarely in reach. I confuse names. My word selection is dysfunctional I say wank instead of wink, tart instead of smart. (My friends really give me dirty looks lately.) I stop midway in sentences because I lose the thread of what I’m saying. I need…I need…oh what’s it called? It’s red….it’s jelly…not jam…it goes with…with…oh what’s this meat called? Turkey! Yes. It goes with turkey. Cranberry sauce shouts Paddy – yes Paddy that’s it Cranberry sauce. Nope we don’t have any. F**k! It’s funny how that particular word rolls off the tongue more easily every day. I say it quite eloquently I think.
The physical toll myelopathy takes is difficult to cope with but the mental strain and stress are as debilitating. Holding a conversation, banking, shopping; these are all challenging. I like to think I’m a generous person. Twice I’ve walked away from the cash point leaving my money in the machine for the next person to spend. At the checkout I need to focus – on my pin number – remembering to remove the card and put it away safely….whilst the cashiers are chatting to each other, laughing. I feel like screaming – Please! Just for one minute concentrate on me – the customer – who is obviously a bit dithery and in need of some support. Oi and you behind me Mister – the more you tut the slower I’ll go!
The last game I play?
Come on lot’s of you have played it too.
Hope your surgeon has a steady hand – buzzzzzzzzzz.