MS Is Lifelong. But Also, It Isn’t

A quick internet search tells me that the definition of “lifelong” is, “lasting or remaining in a particular state throughout a person’s life”. Simple enough. MS is lifelong insofar as it is an illness I will have for the rest of my life. No cure (yet). Chronic. Forever. Lifelong.

It takes time to fully appreciate the gravity of that, to fathom the intangible reality of always and forever with progressive illness. I thought it was a case of; diagnosis: check, shock: check, grief: check, anger: check, start treatment: check, adapt: check, accept: check. A one time, one-stop acceptance shop, and now life will resume as normal. All of the heavy emotional lifting has been done. Dealt the initial diagnosis blow, got over it, moved on.

But when it comes to MS, “lifelong” doesn’t mean “lasting or remaining in a particular state throughout a person’s life”.  MS is fluid, changing, fluctuating, progressive.  MS doesn’t remain in a particular state, no matter how much you think it will, or how long you go with little change (at least, it hasn’t for me). “Lifelong” means something different here.

Yes, you’ll have MS for the rest of your life. But you probably won’t have the MS you have now, for the rest of your life.

Lifelong means that you’ll never stop adapting to changes, you’ll never stop learning your new limitations, you’ll never stop explaining and re-explaining, you’ll never stop figuring out where your optimum fatigue-life balance lies, you’ll never stop finding solutions to aid your changing body, you’ll never stop trying different drugs, you’ll never stop accumulating more annoying symptoms to add to the ever-growing list, you’ll never stop finding new ways to manage them,  you’ll never stop having brain-freeze moments of panic (shit, should I be able to feel my teeth?!), you’ll never stop adding to your expanding skillset (which already boasts some serious high-level resilience, problem-solving and creative-thinking). Turns out grief, frustration, adaption and acceptance aren’t one stop-shops. They’re places that you’ll revisit time and time again, for life.

It’s a lifelong learning curve, and just when you think you’ve got it figured out, just when you’ve hit that sweet “my body has changed, but I’ve adapted and dealt with it, now I use this aid and all is good again” spot, something else needs attention, or you enter a situation that you haven’t been in for a while and realise that the mountain (metaphorical or otherwise) you flew up last year may need a little bit more planning, or require some additional assistance this time around.

I’m only just realising this, really.

My body has changed.  My MS has changed. I’m back in the throes of learning, adapting and accepting. It’s an ongoing process that doesn’t end with an acceptance of a diagnosis. It’s a continual, lifelong journey.

But there are good things on this never-ending learning curve too; your always-improving ability to adapt quicker, to grieve lighter, to bounce back faster. A strengthening resilience, a flexibility, a contentment, a “bigger-picture-don’t-sweat-the-small-stuff” approach to life, perspective.

I recently had to rate personal attributes at a work training event, and while I put 4s and 5s for most of them, beside “ability to accept change” I put a 9. Because that is what’s lifelong about MS; change. Adapting. Accepting. And moving forwards, always, however that movement now looks.thumbnail_IMG_20191117_154600_070

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