Sometimes friends ask you – if you were a dog, what dog would you be? I like the idea of being a pug. Everyone loves pugs. My myelopathy body has numerous folds now so there is a resemblance.
But I’m a husky. I’m strapped into a harness pulling Scott and his bloody kit across the Antarctic.
I’m in a slump. No matter how positive I endeavour to be I can’t shake it. It’s like I punish myself because six years of having myelopathy you’d think I’d know my limitations. Yet I keep going around in a circle, chasing my tail the way disturbed dogs do.
I get these short periods of time, when I’m not in pain, I’m not dizzy, I’m not so rigid, I’m sleeping well and I think, yeah, I’m feeling pretty good. I quietly, slowly reintroduce some of my old routines. It always starts with a wash, I love the smell of clean clothes as you pull them from the drum. I lower the clothes line so it’s at shoulder height. It’s so rewarding folding dry, fresh clothes. Next comes the dinner. Pre myelopathy I was never a microwave/takeaway/chicken nugget mum. I’m not skilled in the kitchen but I do the basics well. It’s not easy preparing food when you have poor grip and little oomph but I put the radio on and putting a dinner in front of my kids is so rewarding. Already the spasms are returning, the head pain is increasing, but I haven’t done the taking the bus independently to the shops yet. I wait for the right moment, for when my husband has gone golf, so that he can’t list the thirteen reasons why not to leave the house alone. I potter in the charity shops, peruse Aldi, I can’t actually buy anything over featherweight because I can’t carry it, so I splurge in the bakers for cakes for the kids. Ok they’re sixteen and seventeen but a Belgium bun still puts a smile on their faces. On the bus back I’m breathing hard, shit my head hurts, I want to cry by the time I get off the bus and as soon as I put the key in the door I’m nearly sprinting to the medicine cupboard. I’m alone, no one to see what a fool I’ve been, what I’ve needlessly put myself through – Mission Impossible – The Bakery. No one home to make me a cup of tea. My hands shake trying to get the tea caddy top off, it takes two hands to lift the kettle. The pain is intolerable, I mean I just want to shoot myself. I sometimes feel, just fleetingly, that I don’t want to do this anymore, I don’t want to suffer but the pain passes, sometimes in an hour of taking pain relief, sometimes in a week. What knocks the wind out of me though is that reinforcement that I’m pretty f**ked. Nothing is going to make me undisabled. I will always be on hard drugs.
It’s never much good feeling sorry for yourself but it’s not healthy thinking it’s mind over matter. If your spinal cord is damaged, it stays damaged. If you have a degenerative or progressive disease you are going to get worse. I won’t say you can make it easy on yourself because that’s never going to happen but you can make it harder on yourself.
My last point is this, I think I’ve always been disabled aware. I see people struggling like the oldies and I’d hold the door, help. them on the bus, things that the normal ok person does to be helpful and considerate. I’ve never been very mental health aware. I could say I don’t know anyone with mental health issues but I probably do, they’re just bottling it all up. I think honestly I have mental health issues. I feel so low sometimes that it’s like I’m fathoms under the sea, so unreachable that I feel totally disconnected from the world. I cut myself off from Facebook, from writing and sometimes hours pass, days go slowly by, I’m staring at the tv but I don’t connect with it, I sleep a lot and it’s like I’ve disappeared.
Today I’m back.