I was a few months shy of my 32nd birthday when I was diagnosed with multiple sclerosis. Since I was pretty close to the middle of the average onset age for the disease, I could live with the fact that my life had suddenly changed dramatically while still so young.
What was difficult to come to terms with was that my diagnosis happened only two and a half years after moving to Ireland, the country I had been dreaming of for more than a decade. As a teenager, I would listen to traditional Irish music and feel connected to Ireland in a way I never did to my native Belgium. When I finally moved there it felt as if I was welcomed with open arms – not just by the people and the culture, but also the landscape and the literature.
MS didn’t care about my dreams or the fact that I was finally on the verge of doing all the exciting things I had been planning to for years. It didn’t care then, and it doesn’t care now. On dark days words like ‘neurodegenerative’ and ‘incurable’ jar against my vision of a bright future.
Navigating the physical and psychological realities of MS
These days, my life is structured to accommodate my symptoms of intense fatigue and piercing trigeminal neuralgia – a nerve pain associated with damage to the myelin sheath of the trigeminal nerve. Both act like difficult children, continuously and ungraciously badgering me to take notice.
There are a host of different triggers that may set off the stabbing pain in and around my left eye and ear. These include eating, talking, listening to other people talking, putting on makeup, yawning, feeling a breeze on my face, hearing loud sounds, seeing bright lights and stress.
Often, when I engage in these activities it feels like a sharp explosion takes place on the upper left side of my face. This comes in bursts of a few seconds to a few minutes followed by a dull, numb sensation that can last for hours, as if I had been to the dentist and they had administered very powerful anaesthetics.
Both sets of symptoms are miserable and I wish I could be rid of them.
To add somewhat comic insult to injury, the fatigue associated with my condition makes me do things like fall asleep in the cinema and at dinner tables. Sometimes it’s like my body ‘forgets’ how to walk up a flight of stairs.
But then, nobody ever said life with MS should be taken 100 percent seriously!
Besides the trigeminal neuralgia and the fatigue, there have been other symptoms that have also left their mark. Depression, neuropathic pain, vertigo, slower cognitive processing and also being bad at remembering new things.
Finding the silver lining
My ‘You have MS’ moment was the first of many subsequent MS moments, all with varying degrees of difficulty and consequences. At first, my life with MS felt like a book written in a language that lacked explanations and imagery. While I tried hard to add meaning to it, at times the disease left me feeling inadequate and out of sync with the world.
And yet, it hasn’t been all bad. Living with MS has also been a growing experience. A certain positivity was born out of the necessity to remain in control and look at the bigger picture: I have MS, so what? Life goes on. Learning to let go of things and people that don’t matter has been the biggest gift MS gave me. I grab every silver lining and tiny miracle, rejoicing in the notion that MS opened the door to who I might become, without feeling resentment or that I was defined by it.
However, I didn’t just wake up like that one morning. It has been a slow, gradual learning curve and I am still learning. It has taught me that there are many things in my life that matter: Family, friends, travelling, studying, the love of a pet to name just a few…
If you’ve recently been diagnosed, remember that you will eventually look back on your own ‘You have MS’ moment as the start of a long journey in which you will gain wisdom and strength. Remember that when you feel defeated, disheartened or despairing.
UK/MED/18/0272 October 2018