"I can’t remember what a healthy body feels like, but that’s ok, because I love my body and all it can still do"


27 November 2019

When Evie was diagnosed with MS aged just 16, she felt "shock, grief and uncertainty". But, 10 years later, she's trying to "take back control of her health" and is determined to deal with whatever MS throws her way. To mark the 10 year anniversary of her MS diagnosis, Evie has decided to share her story in the hope it will raise awareness and help others going through something similar. ​

My name is Evie, I’m 27, and I was diagnosed with MS in August 2009.

I was in 5th year, recovering from a chest infection and studying for my Highers, when I first noticed some strange feelings down the left side of my body, and in my feet. Numbness spread from my armpit to my upper thigh, and a sensation like “pins and needles on steroids” appeared in my feet.

I made an appointment to see my GP, but I wasn’t concerned. I was 16 and invincible.

At the appointment my GP asked me to squeeze her hand, push against her, touch the tip of her finger and then the tip of my nose… a series of manoeuvres that I have since come to know well, but that made no sense to me at the time.

Bloods were taken, and I was referred to a neurologist.  A medical specialism that I didn’t even bother Googling, but that’s 16-year-olds for you.  I did, however, decide to consult Dr. Google regarding my symptoms.  I can still vividly remember sitting cross-legged on my bed, laptop open, perusing a list of possible causes, according to the internet.  The list ranged from vitamin deficiencies through to diabetes, and right at the bottom sat those two little words: “Multiple Sclerosis”.

Cue panic, right? Wrong.  I think my exact thought was something along the lines of, “Well I definitely don’t have that, I’d be in a wheelchair if I did.”

Life went on; studying, socialising, adorning my bedroom walls with the pages of magazines, occasionally wondering why I couldn’t feel my feet.  Then the morning after my friend’s 17th birthday celebrations I went to see the neurologist (sporting my first ever hangover, incidentally).  My memory of the appointment itself is pretty vague (unsurprisingly), I remember being told that, yes, my left side was weaker, that it wasn’t unusual for the nervous system to “play up” after a virus, but that I should go for an MRI scan “just in case”.

So I sat my Highers, and a few weeks later, at the beginning of the school holidays, I went for an MRI scan.  I remember being disappointed that I had to change into a hospital gown after taking every effort to omit any metal from my outfit. 

The technician asked if I’d like music to be played, I said yes, it quickly became apparent that that had been the most ridiculously futile conversation in the history of healthcare. (I don’t know if they bother offering music now, I think I got the radio once although I may have imagined that in a pneumatic drill-induced haze). 

Turns out MRI machines are nothing like X-rays, yet oddly soothing once you get into the rhythm, if you don’t mind losing the ability to think in straight lines.

I knew nothing about MS.  My stomach flipped every time I saw the letters ‘M’ and ‘S’ near to each other (Marks and Spencer’s was a nightmare).  Any phrase beginning with the word “multiple” was like taking a tiny little punch in the gut. 

Evie

I was expecting to leave after my scan, but I was asked to wait to speak to another doctor.  This new neurologist would later have the honour of officially diagnosing me with MS, but on the day of the scan she just asked me a few questions.  Among them was something like, “so this sensation in your feet, does it feel like you’re wearing socks when you’re not?”

Such an innocent enquiry, but that was it.  That was the moment I started to panic.  How did this doctor know how to articulate an alien sensation that I had so inadequately described?  This must be a sign of something.  This must be a sign of something bad.

The looming threat of exam results began to outweigh the panic, taking centre-stage in my mind, but when they came I was told, “the world is your oyster now, Evie.”

The joy was short-lived, stifled under a thick layer of shock, grief and uncertainty.  Diagnosis day came about a week after results day. It was quite the life-changing summer.

I knew nothing about MS.  My stomach flipped every time I saw the letters ‘M’ and ‘S’ near to each other (Marks and Spencer’s was a nightmare).  Any phrase beginning with the word “multiple” was like taking a tiny little punch in the gut. 

Fast forward 10 years and I have amassed quite a collection of ongoing symptoms including fatigue, spasticity, optic neuritis, sensory changes and pain, and I am currently on DMT number three. 

In the past few years I have become more proactive in managing my symptoms, and taken back some control over my health by means of a healthy (ish) diet, and exercise.  I try not to think too much about what the future of my MS might look like, but I trust that I will be able to deal with whatever comes my way. "The best predictor of future behaviour is past behaviour" and all that.

MS has been part of my life for so long now that it’s become my normal. I can’t remember what a healthy body feels like, but that’s ok, because I love my body and all it can still do.  Everyone has their crosses to drag around, and right now mine just so happens to be my left leg.

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