A Few More Inches

I had a little plan for how this week was going to go.

Hang on. Let’s start at the beginning.

I have to write code for a workflow engine this week and I have the whole week to do it. I don’t get to code, what with being a management consultant and not a developer, but I like to do it under carefully described situations, and this was a carefully described situation.

The work happened to coincide with Mr. Spit being away for a week, so this was going to be the perfect week to revel – nay – wallow in being, well, being a 14 year old boy. I was going to eat popcorn and nutella and subsist on cheese and coffee and bourbon for days on end. I was going to sleep when I was tired and work when I wasn’t.

It was going to be the perfect mental break for someone who has taken on a back-breaking amount of responsibility. This is, in all likelihood, the last time I will be able to do this at all. I should have handed this work over to the minion, but I did it last time and I can sort of make it work and it’s faster for me to do it and a million more flimsy excuses. I wanted one last fling before I became management. One last chance to come as close as I can, in my profession, to working with my hands: taking a project through the plan, build, run cycle and knowing that I did that. To having a single thing that I can point to and say “I built that.”

I wanted a chance to live a life I used to live. It is all things nerdy and geeky, but in every way I was delighted with the plan, so looking forward to it.

With great glee I told the Handsome Aussie about the plan.

And he – ever so gently – reminded me that I can’t. I can’t do this. I can’t function like this. He was the voice of reason reminding me of my limitations.

That’s what MS is.

I forget, you know.

I forget that I have a chronic and degenerative disease and I get busy with work and Mr. Spit and the nieces and nephews, taking care of everyone else and running the house, with hobbies and interests. I forget until someone asks me if I should be walking the dog 8KM a night, if I shouldn’t get some sleep, if I shouldn’t eat real food for energy. I forget until the exhaustion hits me, until I drop a glass and realize that I have lost the feeling in my hand. I forget until my leg is numb and my eyesight murky and I walk into things. I forget until I get a fever and I remember that fevers cause relapses. I forget until someone or something reminds me.

I honestly forget to take care of, to watch out for myself.

I wrote 3 months ago about how MS was a game of inches. I go back and read that post and I think about the inches I have come in 3 months. I smile more, I am angry less. I’m managing. My colleagues don’t feel like they have to stage an intervention. But this – Mr. Spit asks if I should be walking that far in the heat and I am honestly confused about why he is asking. I am reminded that I must sleep, must eat, must drink water and I want to argue with the person reminding me. I still require that people remind me to sleep and eat and drink water. I still cannot set my own boundaries and make others shoulder some of the work. 

I am kindly told that my days of up all night, fuelled by caffeine and adrenaline and sheer love of what I am doing cannot overcome the lesions in my brain. And I stare at those words on an electronic screen, and I feel rage well up in me all over again. I want to stamp my foot and wave my hands and protest, even as I change the plan.

Perhaps I have not moved so many inches as I first thought.

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1 Response to A Few More Inches

  1. debby says:

    two steps forward, one step back. And so it goes…

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