Oh my god, I am (so not) dying!

You know you’re on to something when you recognise your medical file from afar, even when it’s tucked between 15 other colourful medical records.

Sadly, this is a fact that even World MS Day on Wednesday, May 30th can’t heal. Nevertheless, as a global community of approximately 2.3 million people with MS, being part of the solution – a.k.a. spreading awareness and pushing for a cure – can be infinitely rewarding. On WMSD, I feel an even greater purpose to be part of that solution, whether it is by attending disability-related meetings and spreading the word afterwards, or simply by becoming more conscious of the problems people with MS and other disabilities are facing in the world today.

On World MS Day, I am always reminded of how it all began. Where to begin?

After 12+ year of living with MS, I figured out this nasty, little, freak of an illness that not only saw my pain levels rise to new heights but also taught me a lot about what drives people.

On a philosophical day, personal MS challenges are put into a clearer perspective by being able to relate to others. As a community, the people with or without MS in my life, I tap into each other’s knowledge and wisdom which in turn makes me grow, not only as a person with a neurodegenerative illness but as an individual also. In the end, I realise that I am – and can do – so much more than I sometimes think possible.

My illness had many names in the past. There was “It” and “That”. There was also a “Bweurk” that sounded like “Yuk” as well as “Multiple SSS” and “Multiple SclSclerrr… sorry, my tongue is getting stuck in the word!” Needless to say, the latter makes me look like a right yob, with people thinking, “Well if she can’t even pronounce the word, she cannot possibly have that illness!” Humanity at its best, right?

The last name I used for MS was a “loveless liaison” (aren’t they all?). The visiting party of the affair misbehaved as much as it pleased, while I had to pick up the pieces and superglue them back together. As such, there have been times when I felt out of sync with myself because I was being pulled in several directions at the same time, trying to mend a broken heart on top of hospitals, medication as well as a changed social and professional life that cluttered my mind.

On a physically demanding day, I have to admit that indeed, I am a changed person and not the 56kg weighing girl anymore who moved to Ireland 14.5 years ago. Life with MS can be awkward. It can be puzzling. It is unquestionably easier said than done. It’s the little things that are happening inside your central nervous system that can make you stumble as if your body reinvents and transforms itself without your consent because the ‘old’ you is suddenly not good enough anymore.

“Seeing much, suffering much, and studying much, are the three pillars of learning.”
(Benjamin Disraeli)

If life without MS is a learning curve, then life with MS is trial and error in almost everything you do, from medicine and lifestyle changes to learning about and accepting the concept “It’s OK not to be OK.”

Twelve years on, however, I am the first to admit that self-sabotage has been part of my makeup in the past. For example, while waiting for my last MRI brain scan results, an “Oh my god, I am dying!” mindset took over after watching a medical show on television. When I found out that there are periventricular white matter changes visible in both frontal lobes aside to those in my left medial temporal lobe, I gasped for air. With a mountain of sarcasm, I thought, “Well, YOU wanted to know the results now, didn’t ya!” As soon as I got near an internet connection, I googled those terms and regretted it then and there.


In the past, had I not been talking at conferences about how misleading and awful physicians Dr Google and Dr Bing were?

My bad.

Willeke-Maya, queen of self-inflicted self-sabotaging crappy notes-to-self.

But, it doesn’t have to be this way. MS can be an adversary, but it doesn’t have to be the enemy.

As you can tell from all the above, I didn’t die.

I also didn’t ‘nearly die’, nor have I even thought about dying since.

#LifeWithMS boils down to this: although nothing in life is certain and at times you may feel as if everything is spinning out of control, life eventually does go on.

You might have lost some self-confidence after experiencing relapses, so give yourself time to adjust to the new you. Look for possibilities and opportunities that might help you get through daily life that little bit easier.

So many things can be resolved by common sense, but they have become so familiar that we oversee their value. Or, think outside the box and weigh up what works, and what doesn’t. If it doesn’t, throw it out.

It can be as simple as preparing an overnight bag just in case you need urgent hospitalisation, or as expensive as buying extra health insurance. Or, it can be as cheap as finding motivation in the silliest of things or in finding out that ultimately,  this is the life you have right now, so you can just as well enjoy it as best you can. It will not only give you a greater sense of confidence but those around you also.

If you want to find out more lifehacks, do watch MS Ireland’s latest video below, filled with things that might just make life easier for you!

Remember, you can’t have courage unless you are afraid so in the end, life with MS is about the resilience of the human spirit and wearing your scars with pride.

Happy World MS Day!

#LifeWithMS @WorldMSDay #WorldMSDay #WMSD2017

@MSIreland @LivingLikeYou

About Willeke-Maya on World MS Day 2017: Slightly silly with adult undertones. Diagnosed with MS in 2005; retired since 2009. Hooked on autumn, winter, my black tall Dr Martens boots and milk. Eats history, rugby and books for breakfast, lunch and dinner. Writer of Ireland, Multiple Sclerosis & Me and contributor to both award-winning blogs by MS Ireland as well as Novartis’s Living Like You MS blog. MS Patient Advocate by day, professional sleeper and sender of remarkedly weird texts by night.

3 thoughts on “Oh my god, I am (so not) dying!

  1. Much of what you’ve written is familiar to my in my struggle with Tourettes Syndrome. I suspect that like me, when the meds are working and you’re between relapses, it’s easier to be up-beat about your condition. But unlike me, you know that your condition is likely to progressively worsen, whereas mine is unlikely to (I’ve probably already seen the worst). Reading your blog gives me a nice reality check. Thank you.

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