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The P Word

The P Word

There it is, in black and white, the ‘P’ word; “The appearances suggest progressive disease”.

I’ve been experiencing an insidious decline in my physical ability for a few years, and changes in my symptoms, all the while questioning how much I can trust what my mind is telling me. But here it is; confirmation, validation, visual evidence, a comment at the end of my MRI report. I knew this was coming, didn’t I? MS is a progressive condition. So why do I feel like the ground has once again shifted under me? 

It’s the same illness I’ve been diagnosed with for fifteen years – almost half of my life – and it’s still ‘active’, meaning nothing about my diagnosis itself has actually changed. But the arrival of that P-word feels new and uncertain and like maybe I’m in free-fall all over again. At first it was tentative, a clinic letter a couple of years ago mentioning “possible early secondary progression”.  Quiet enough not to pay it much heed. My scans showed no changes; maybe I’m just not trying as hard as I used to. 

But in my most recent spinal MRI there were changes suggestive of progressive disease. Visible changes. Already? That can’t be right.

I look to my left as I sit and write this, at the rollator next to me. I think about the slow 600m amble to this coffee shop that once, not too long ago, wouldn’t have even registered as physical activity. Oh, maybe it is right. And maybe it’s no bad thing that my disease progression is visible on scans; confirmation, validation, visual evidence. In a way, vindicating. I can trust my body, I know my body, I can trust what my mind is telling me about my body. 

And there might even be something akin to relief, buried amid the mix of emotions. It’s like I’ve been given permission to set stronger boundaries, to say “no”, to stop comparing myself to other ‘MSers’ my age who were diagnosed more recently, to stop comparing myself to myself of ten (or five) years ago, to cut myself a bit of slack.

So now what? 

Well, I’ll curl up in a ball and wait.

Just kidding.

These recent results (including new lesions and a change to a stronger DMT after 6 years - everyone’s at the party) have re-ignited something akin to that post-diagnosis fire that fuels all sorts of positive lifestyle changes. I’m not ready for my world to get much smaller, not yet, not at thirty-one. But that also means being realistic, and accepting of the body I currently have. Enter the wheelchair, a liberating addition to my life that my recently diagnosed self would have balked at. I can’t do much about my smouldering nerves, but I can find ways to keep living in a way that brings me joy despite them.

Rolling through the park with the wind in my hair.

Exploring new places.

Being present; laughing, chatting - instead of constantly seeking a place to perch.

Those simple little things that a life with MS really helps you to realise are actually the only important things. The big things.

I’ve never been more grateful that my natural disposition is to look outwards, to the world around me in all of its infinite beauty and possibility and ask “what next?” 

A number of years ago I took up hillwalking in preparation for a Ben Nevis night hike in support of the MS Society. I no longer traverse mountainsides (my most recent and probably final attempt in 2021 had my husband convinced we’d need mountain rescue to get me down. I made it myself, three wobbly hours later and with one Tick companion after falling into bushes) but I do ride horses, for the first time in my life. And perhaps I’ll give kayaking a bash upon the arrival of warmer weather (cold water swimming is a no from me, thanks). And if there ever comes a day when I can no longer do those things, I know there’ll be something else I will do instead. Bird-watching, finger-painting, throat-singing, life-observing, book-writing, wheelchair-racing, film-critiquing – the possibilities are endless.

What next?

And what can I use to help me do it?

Fifteen years on from my diagnosis of MS; it’s still active, I’m on another new DMT, I’m experiencing the beginnings of progressive disease, and I’ve never been more sure that I’ve still got so much to look forward to. Right after I take a nap.

Yellow ribbon

About the author


31, UK, RRMS, diagnosed 2009, Tysabri