Thin ice

I have had weeks and months like this before. And I know with certainty that I will have them again. I know now that these fluctuations are par for the course. It took a decade to truly grasp that actually; that you can do everything ‘right’ and still, even a relapse* can come.

It’s like I’m always walking on ice; and that ice varies in thickness and precariousness depending on whether or not I’ve been exposed to a cold or bug, or whether I stayed up past 8pm three nights ago, or whether I’ve concentrated for too long on drafting an email, or whether I chatted with a visitor just yesterday. Or merely because I have an illness that affects my body in different ways on different days for reasons science doesn’t yet understand.

So many variables affect the safety of that ice. And sometimes out of nowhere the ice doesn’t just crack, allowing me a warning sign that it’s about to break, but it breaks out of nowhere. And then we get into the territory of how deep that freezing cold water is at different points…

Is it not really hard to get the balance right with the whole Waiting-To-Feel-That-Bit-Better and Can’t-Just-Do-Nothing-Forever-Despite-How-Ill-I-Feel? Knowing that the ice is always there beneath me as I shuffle or wheel or walk.

So much of my early exposure to information about this illness came with a heavy dollop of blame; that any falls through the ice are always the fault of the patient. I disagree wholeheartedly. But if there were some truth in it, who could blame me for wanting to have a go at my version of ice skating once in a blue moon? When I usually have to be so regimented and sensible and conditioned and restricted. It’s as if people forget we haven’t stopped being ever-flawed human beings who are wired to live, even if it’s only a little.

I understand better than anyone that I cannot expect to make it far out onto the ice each time I fancy it. I’m not asking for that.

Let me skate. Let me live a little once in awhile. The consequences are mine to deal with.

*I define a relapse as a more permanent return to my most severely affected that lasts more than a few months.