Trying to control the uncontrollable

I think one of the most exhausting things about living with a chronic condition is its unpredictable nature. You can be living your absolute best life and then all of a sudden, you get a reminder of your reality. Whether that's a flare-up, a relapse, an appointment reminder or a random symptom that makes you think ‘Is that MS?’, sometimes it feels like it just pops up to remind you that it's still there.

There isn’t really a solution to this, unfortunately it’sthe reality of the situation. However, what has helped me is holding onto hope.

This was really hard when I was first diagnosed. I didn’t really understand myself or my body yet. I also didn’t really understand the condition. I was told under no circumstances to Google it, at least not during the difficult times. But it did mean I sometimes felt like I was navigating everything blind. I didn't know what was normal, what I should worry about or what my future might look like.

Over the years, there have definitely been times when I've spiralled a bit and tried to find ways to control my MS. I've changed my diet, taken supplements and tried various wellness trends, sometimes convincing myself that if I did everything "right", I'd somehow be able to control what happened next.

The problem was that when I did have a flare-up, relapse or an MRI that showed disease activity, I felt like I'd failed. Had I eaten the wrong things? Had I not exercised enough? Was there another supplement I should have been taking?

It took me a long time to realise that I can do everything "right" and still have MS.

That's not to say I've stopped caring about any of those things. Eating well, staying active, taking appropriate supplements and generally looking after myself are still really important to me. They make me feel good and give me a sense that I'm doing something positive for myself. I've just learnt that they don't give me complete control over my MS.

More recently than I'd probably like to admit, I've realised that looking after myself mentally is just as important as looking after myself physically.

For me, feeling strong mentally doesn't mean always being positive or pretending I'm not worried. I still worry. I still overthink symptoms occasionally and I'm not sure I'll ever particularly enjoy waiting for MRI results! It's more about knowing that if something does happen, I'll deal with it when it comes.

And that doesn't all come from me. It comes from the people I surround myself with, having a medical team I trust, the support available through charities like this one and generally looking after myself in ways that make me feel good.

Once I started thinking about things this way, the difficult moments stopped feeling quite so catastrophic. I can't control when MS might interrupt my plans, what my next MRI will show or what my health will look like in ten years' time.

What I can control is how much of my life I spend worrying about those things.

I'm definitely still learning how to live with the uncertainty, and I don't think I'll ever get it completely right. But I'm getting better at enjoying the good days without constantly waiting for something to go wrong.

And for now, that's enough.

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