When Multiple Sclerosis Follows You Everywhere


Can you recall what life was like before this unexpected journey started?

Nope?

Neither can I.

There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organize a party, or rather, a pajama gala. Sponsored by multiple sclerosis (MS). And it’s undoubtedly impacting my thinking.

No, seriously, having MS is not a simple task, job or status.

It’s always there, in the background.

Or in the limelight.

In the shower.

In bed.

While talking.

Moving.

Yawning.

Trying to remember how to step up a staircase.

Or just for once, trying to finish a year without seeing a whole dinner decimated because you managed to drop another few cups and dinner plates. Again.

You get it.

It. Is. Always. There.

Granted, it’s nothing to laugh about, but sometimes your immuno-compromised body is a source of giggles or roaring laughter.

Earlier this year, I received a phone call from my attending hospital about MRI scan results that resulted in hilarious laughing on both sides of the phone line:

Hospital: “I hear you’re going to Belgium soon?”

Me: “I am?”

Hospital: “You asked for your MRI scans?”

Me: “I did?”

Hospital: “We require your photo ID before we can send them to you.”

Me: “Isn’t an MRI, like, a picture of my brain, photo ID?”

It once again demonstrated that you are faced with two choices when you have an incurable illness like MS. You either keep enjoying life or you waste away. Laugh or cry. Sink or swim. Do or die.

Mine is not a fool-proof way of living, but its formula is to laugh at my inadequacies, my failures in speech as well as in writing. We keep track of my spoken words that come out all wrong and I wonder if it’s time to publish that very dictionary.

Life with MS is learning how to accept and how to adjust. It is also about recognizing progress, being grateful for what you can still do and keep an optimistic view on pretty much everything in life.

MS doesn’t define who you are. You define yourself, you and the strength to carry on fighting every single day. Throw anger about not being the old you anymore, overboard. Life’s so much better without all that hassle.

The most neglected purpose of a serious, chronic diagnosis is that you can start over and do things differently this time. Once I realized that hill-walking and rock climbing was not on my list of things to do anymore, I scouted for things I could do.

And, oh boy, I found way too many things to do.

The fact that you are reading this right now is one such thing; my writing was developed out of the necessity to find different ways to fill my life going forward and as an exercise in conveying optimism through writing.

Long may it continue.

Getty Image by Jackiejan

This story originally appeared on Ireland MS.


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