An Impatient Patient

Mourning the loss of one’s health at 33 is a strange preoccupation, especially in the midst of a pandemic. It has made me reflect on my own journey and how lucky I am that I was diagnosed last year before the world shut down. Looking back, I had had symptoms for years.

From chronic fatigue and blurred vision when I exercised, to tingling and numbness in my feet and torso. Some days it felt as if ants were crawling up my legs, and when I was running, my eyes would glaze over as if they were filling with water. So, I got glasses. I went to doctors. Lots of them. One doctor told me the numbness in my torso was a ‘pulled muscle’. A gastroenterologist did an endoscopy and colonoscopy. A chiropractor said I needed to ‘stretch’. My GP sent me for a CT scan. Yet, no one recommended a Neurologist. By that point, my friends probably thought I needed a Psychologist. Eventually, I saw a Podiatrist who gave me insoles and manipulated the nerves in my feet. The tingling subsided. Each time symptoms remerged, he seemed to fix it and I thought I was cured.

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In 2018, I left my life in Brussels to embark on a new teaching career in Bahrain in the Middle East. As it happens, doing a teaching degree while teaching full time is fairly stressful, especially with undiagnosed MS. I spent most of the year flitting between chronic fatigue and depression, which I put down to stress. The 47-degree heat exacerbated my symptoms, and the tingling and numbness migrated to my hands. I opted to see an orthopaedic surgeon to ‘fix my feet’; a shrewd decision based entirely on his physical likeness to a young Ralph Fiennes. The novelty of this soon wore off after he suggested that my biological knowledge was somewhat lacking.  Apparently, despite my unfaltering belief in the contrary, the nerves in the feet aren’t connected to those in the hands. Whodathunk? He referred me to a Neurologist, and I went, begrudgingly. The neurologist tested my mobility and strength. Although my reflexes were intact, she still sent me for an MRI.

The experience of having to stay completely still inside an ice tunnel designed to fit a small badger is not one I will ever relish. The nurses told me to take everything off, including jewellery. I was thankfully spared the indignity of the white gown flapping open to reveal my naked backside to the world and allowed to keep my underwear. I lay down on the metal slab, like a hunk of meat on a butcher’s block; the temperature perfectly honed so I could imagine I was sunbathing.

In the Arctic. They came towards me holding a needle and told me they needed to put dye into my veins to see my scan better. Since I was basically a hostage, I couldn’t exactly refuse. In what was an exercise in abject futility, I was then handed a pair of headphones. Supposedly, the music would alleviate the ‘slight noise’ from the MRI machine. This turned out to be unremitting pneumatic drilling at different decibels and speeds, for an hour. As my left headphone was broken, I had music pumping in one ear, and the dulcet tones of galactic drilling in the other. Bliss.

Convinced that it was still a ‘foot problem’, I was totally unconcerned when I went to receive my MRI results. Alone. Despite having garnered my extensive medical knowledge from various US medical dramas, I suspected that lots of white dots scattered across the black space on my brain scan was probably not a good sign. I was lit up like a Christmas Tree.

“Have you heard of MS?”

My world crumbled. Like Dorothy, swept away by the tornado, the room became a blur and I burst into tears that streamed down my face in gargantuan waves. The unattractive heaving sadness where your nose sobs in solidarity and your voice won’t work because you are gulping air, trying to breathe.

“I’m going to end up in a wheelchair!” I wailed uncontrollably.

I had lesions on my brain and all down my cervical and thoracic spine. Disconcertingly upbeat, she was “surprised my symptoms weren’t worse given how many lesions I had”. Great. She handed me leaflets and told me to start intravenous steroids as soon as possible. Did I want to start today? Absolutely not.

I left in a daze and sat in my car staring into space, until I realised I was slow roasting as I’d forgotten to turn the air conditioner on. I rang my parents and brother in Ireland who, by some morbid coincidence, were by a cemetery so apparently nobody paid much attention to the woman howling in the corner. Devastated, they all flew over, which at the time I thought was utter madness. Although hugely appreciative, I was also embarrassed by the fuss I caused.

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I was still in shock and hadn’t really considered the impact on others. That evening, friends commiserated, while I drank copious amounts of wine. Ravaged by the world’s worst hangover, I got up early the following morning to start the intravenous steroids. My incredible friends and family ferried me to and from hospital, as, for four days my body was invaded by brain scans, needles, and chemicals. Pickled with steroids and alcohol, it was probably the worst week of my life. Yet, I have never felt more grateful and loved. In a surreal twist of fate, had I been diagnosed this year, none of it would have been possible.

My life since then has changed exponentially. Although I had had MS unwittingly for years, a diagnosis is a double-edged sword. Initially relieved I had answers to the years of bizarre symptoms, the cold splash of reality hit that this would be a life-long battle. When I returned to Ireland, I had a relapse resulting in peripheral numbness and muscle spasms.

I became obsessed with my prognosis and Google became my constant companion, to the despair of my neurologist. Although supportive, no-one I knew really understood what I was going through, and I wanted to meet people who had similar experiences. I decided to contact MS Ireland. Their Coordinator gave me research-based advice, unsurprisingly not from Dr Google, and introduced me to a vast support network. I have since met some incredibly inspirational people with varying degrees of MS and even though life is still full of uncertainty, I’m slowly learning that it’s OK to not be OK.

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