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.
I am Willeke-Maya, a quirky, tenacious and neurologically compromised female expat living in Ireland since 2002. Two and a half years after emigrating, I was diagnosed with MS and trigeminal neuralgia. Both seemed awkward, puzzling and easier said than done at first. Any illness is unwelcome, and life often feels and sounds like a war zone, especially when excruciating facial pain (trigeminal neuralgia) joins the sound of screaming children, banging doors and sudden loud noise into auditory hell (hyperacusis) and fatigue that belongs in the narcolepsy category of life. Elsewhere, neuropathic pain, vertigo, ataxia and prospective memory issues are just a few of the other symptoms that occupy my day. Despite having accepted my illness and all that it brings, MS is the type of illness that carries this tagline, "The illness is mine, but the tragedy theirs,” when asked how loved ones feel about your condition. Buzzwords like the above don’t calm down overactive minds. But, life goes on. Fifteen years with a progressive, neurodegenerative illness beg you to keep your chin up, for there is no other way to go through life. I hope you will find some solace in what I write and do feel free to comment or send a private message in the Contact page. I began my blog 'Ireland, Multiple Sclerosis & Me' (IMSM) in a bid to convey optimism through writing. It turned into an award-winning blog that recounts my journey on becoming normal when life with MS is a beautiful mess. By sharing thoughts, hopes and fears, it turned into a mix of personal stories and info about MS. My goal is to connect with people who like me, found themselves in front of MS's door, and were dragged in for an extended stay in one of its uncomfortable, dark-lit backrooms. Hopefully, we will connect somehow to share its burden and be an inspiration to each other. After all, IMSM was created to do just that: trying to make sense of MS nonsense. Now 17 years in Ireland, I remain fiercely independent as always, I hope to help change people’s perception of invisible illnesses like MS. AWARDS 2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland ◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019 ◾ Ireland Blog Awards: Finalist 2014, 2015, 2017 ◾ MyTherapy: Best MS Blog for Simplicity 2018 ◾ Everyday Health: Top 10 MS Blog of 2018 ◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019 Contributor to: ◾ Novartis MS blog Living Like You ◾ Teva’s MS blog Life Effects ◾ MS Ireland’s blog MS & Me ◾ The Mighty ◾ Guest contributor to MyTherapy
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