Being diagnosed with Multiple Sclerosis (MS) is a weird experience to have to go through, its serious yet not urgent, you have it for life yet not all time, it’s something that just sits there in the back of your mind, until it doesn’t.
Almost a year ago now, I lost the vision in my left eye, after a few days of it getting considerably worse, I found myself in the Hospital Emergency Department. I thought I would be given some antibiotics and maybe some eye drops and be sent on my merry way, instead an ophthalmologist was being called in from home on a Sunday night to treat me. Instead I was put through test after test, question after question and finally sent for an MRI.
The vision loss was diagnosed as Optic Neuritis, I had it for about 3 weeks then thankfully, my vision returned back to normal. I was fine.
The MRI showed 3 lesions on my brain, cause for concern but nothing conclusive. Although I will say that the words ‘possible Multiple Sclerosis’ were being thrown around a few too many times for my liking. I really had no Idea what MS was, I had taken part in the MS Read-a-thon in primary school and watched Susan’s battle with it on Neighbours but that’s about the extent of it. I googled it, as far as I could tell I had no other symptoms, I decided, I was fine.
I was to be monitored and have bi-annual MRI scans to keep an eye (for lack of a better word) on things for the next few years, I told myself that it was just standard precautionary measures. I was fine.
Over the next year, I had 2 MRI scans no problems, no new changes. I had been told at the time the scary statistic of 70% of people who get Optic Neuritis develop MS within 2 years. Not to worry, this was not my future, I was certain of it. This happens to other people, not me. I was fine.
The third scan had different ideas, in 6 months I had developed 5 new lesions, some with inflammation and apparently a new diagnosis.
The phone call came on a Friday when I was home from work, instead of my usual letter in the post telling me that there was nothing new to report, I got a phone call, I had to come in the following week and see the neurologist, it couldn’t wait for my next appointment time.
I’ve been to my fair share of emergency departments and doctors to know that when they don’t want to delay an appointment, it’s rarely a good sign. Healthy people can afford to wait, sick people cant. I instantly got that sinking feeling that perhaps, I wouldn’t be fine.
I had it, she didn’t have to say the words I could tell in her voice, I knew. After I hung up the phone, I broke down on the ground in tears, my insides physically hurt.
Visions of wheel chairs and life changing chronic disability filled my mind, my future was suddenly cloudy.
I had recently seen some scare tactic 60 minute episode and knew in some cases this disease means business, there is no cure or any way to determine how it will affect you. MS is made out to sound like a time bomb, strapped to your chest, ready to fuck shit up whenever it wants with to no rhyme or reason. I immediately made 2 phone calls, to my mum and Mr Twist, they calmed me, they still do calm me. All my family do.
My appointment confirmed what my phone call had alluded to. I was diagnosed with Relapsing Remitting Multiple Sclerosis, the most common strength of this auto immune disease.
For some reason, that even surprises me I didn’t cry during my appointment. I did however develop a lump in the back of my throat that made it hard to swallow; not a physical lump but the kind that comes with extreme emotion. This lump stayed with me for the next three days.
For 3 hours, my mum, Mr Twist and I sat and listened to every detail of my new diagnosis explained to us, my new medication options and perhaps the scariest part, its unpredictability.
Credit where credit is due, the doctors and nurses were lovely, they were so informative and tried their best to explain everything in an honest yet non confronting way that we could understand, they really did make us feel safe and that maybe, despite of everything I was up against, I would be fine.
After we left the hospital, I went to work. I needed to keep my mind occupied and have some sense of normalcy.
That night Mr Twist and I went for a walk on the beach, one of our favourite things to do. Like always, the sea, sand and chatting with my favourite human made everything seem ok.
I came home and fell into bed, just before nodding off, like a sadistic masochist, I thought about all the bad things that are a very real possibility for my future.
Then I had another thought……
But not today Caitlin. They’re not happening today.
I slept, well.
It’s been a few weeks since then and the dust has somewhat settled. It’s still hard to try to digest everything, I guess not having any physical symptoms makes it harder for me to understand, I look and feel fine.
Deep in the depths of my thoughts the thing that scares me the most is how un-predictable MS is, how despite having come so far in research and medication options, there is still no cure. For the rest of my life I will have this. For the rest of my life I will be waiting.
The most confronting thing about this whole experience is seeing the look in other people’s eyes when you tell them. It’s first and foremost a look of strength yet underlined with fear and uncertainty. Like all chronic illnesses it doesn’t just affect me but my family too.
Having MS means I don’t know what my future holds, but then again, none of us ever do. Life is unpredictable, that’s what makes it so fascinating.
I have come to realise that although MS is shit and I really wish it wasn’t happening to me, it is what it is. After researching and reading every piece of information I can get my hands on I have realised that maybe this isn’t the death sentence I thought it was, perhaps the unpredictability of it will work in my favour.
A favourite quote of mine is from writer Elizabeth Gilbert “Ruin is a gift, Ruin is the road to transformation” Please don’t misunderstand me, I’m far from “ruined” but I like the sentiment just the same, my disease is my inspiration on my road to transformation.
In a few short weeks, MS has made me appreciate my body so much more, like how what Im putting into it like food, alcohol and cigarettes directly affect how it functions. How being strong both physically and mentally will be my biggest asset to combat MS and anything else life throws my way.
I am only a few weeks into this and I really have no idea what to expect, maybe I’ll get symptoms, maybe I won’t, I really don’t know.
But here’s what I do know, I have a kick arse cheer squad supporting me and no matter what happens or where this takes me, I’ll be just fine.
I am just fine.
***Please note MS effects each individual in different ways, one case is not comparable to the other. I do not want to take away from anyone’s experiences or try to dampen them, this is simply my recollections so far, all thoughts and information are just my own***