Predictable Unpredictability

One of the things I find hardest about living with chronic illness is the predictable unpredictability of my health, and the impact that unpredictability has on every aspect of my life. Everything is affected either by my inability to make definitive plans, or by my determination to make plans only to then have to cancel at the last minute.

It’s all too easy for friendships and relationships to be put under strain as plans are repeatedly cancelled, whereas others fall by the wayside as I pull back and stop making plans for fear of the guilt and disappointment that comes with every cancellation and postponement.

It isn’t just friendships and relationships that fade as I take a step back — that diminish as I pull away from them. Hobbies and career aspirations are frequently sidelined too, set aside in a box that I don’t want to open for fear of failure or disappointment; afraid to begin something when the predictable unpredictability of chronic illness makes the commitment to consistency difficult to manage.

And that is where this blog comes in.

I thought about creating The Struggle long before I pressed ‘publish’. But, I hesitated. Despite the fact that I find writing incredibly cathartic, and despite knowing how positive it is to read other people’s stories, I hesitated. I hesitated because of fear; fear that the unpredictability of living with a chronic illness would make it impossible for me to be consistent. The fear that I would give up. The fear that I would fail.

And those fears were realised as that unpredictability made itself known over the last few months. During the normally hectic enough summer — with the children off school for six weeks, and the end of the university year bringing with it final assignments and examinations — my health faltered. I was constantly exhausted, night sweats plagued me every time I slept, the usually bearable spasms that I experience became intrusive, and my pain level increased from a baseline of six up to a torturous eight. This bad patch eventually culminated in a hospital admission with sepsis.

Throughout those few months, my idea of ‘getting shit done’ was just getting through each day, making sure that my children were fed and happy. Anything on top of that was a bonus. There were glimmers of sunshine in the midst of the dense fog — our family spent a few days relaxing together on the Dorset coast, there were random days spent drinking tea with friends — simple pleasures made all the more enjoyable for the punctuation they brought to the everyday slog through treacle-like bad days.

During that period, everything else was pushed aside; including this blog. It was a stark lesson to myself that ‘getting shit done’ can mean an entirely different thing from one day to the next. And that, just because it feels like I’m getting ‘less’ done, it doesn’t mean that I’m failing: I’m just doing what I can, when I can.

So, now I’m finally emerging from the stupor of the last few months, I’m getting back into blogging. The predictable unpredictability of my chronic illness might mean that I can’t always post with the consistency I would like to, but that doesn’t mean I can’t post at all.

Even after many years of living with chronic illness, I’m still figuring it out. It has become second nature to embrace the times when I am feeling well enough to do all the things I want to do. But, what takes longer to learn, and is perhaps far more important, is how to be kind to myself — and get rid of the guilt — on the days when ‘getting shit done’ means just getting through the day.

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