Some days it feels as though I’ve accepted my fate, I wake up and think ‘yes, I can totally do this.’ Other days I wake up and think ‘fuck it, my life is over.’
Multiple sclerosis. Sounds scary, feels scary, well it is scary. I knew nothing about MS until recently. Yeah sure I knew it was a disability – but other than doing a few MS read-a-thons as a kid I really had no idea what an MS diagnosis entailed. Through copious amounts of googling I’ve become reasonably educated, at least for somebody who doesn’t science – at all, ever.
It started in my legs about two months ago. I was working a normal shift at a local café when all of a sudden my legs felt really weird – almost totally numb. The best way I can describe it is that sort of ‘jelly legs’ you get after running or bike riding – but turned up 7 notches. Every step felt like my legs were going to fall out from under me. It was a super strange sensation, it was scary. I wasn’t sure what was happening. The day progressed and there was still no change.
Then it hit me, those two scary words which together created a scary image of me, disabled. Multiple Sclerosis. It doesn’t get less scary the more I say it. My doctor presented the idea to me about six months ago when I saw him about back pains.
To be honest, I totally ignored the idea. I threw out the referral to see the neurologist and the idea of it left my mind completely. I’m barely 21, I’m fit and healthy, there’s no way. The doctor’s words which seemed so far-fetched then, now hit me like a truck, ‘you’re showing early symptoms of multiple sclerosis’. Thinking back on that – how does someone who would describe themselves as intelligent ignore such a statement?
I was in a state of total panic, I had a thousand unanswered questions. Will I be able to walk again? Will I be able to dance again? Will I die? Will I ever be able to do anything I want in life again? Have I wasted the last 21 years by not seizing every single opportunity?
I was sent home from work early and I sat in my car for what felt like forever and just cried. Cried because I didn’t know what was happening to my body, because I didn’t know what to do about it, because I didn’t know anything. Scared didn’t even begin to cover the wave of emotions I was feeling in this moment.
The weeks progressed and each day was different. The numbness spread to my hands, gradually my face and eventually there wasn’t an inch of my body which felt like it had before. I felt lost inside my own body, all my limbs felt foreign to me. Each movement felt forced, even the simplest of tasks required too much thought.
Things that I took for granted every day exhausted me now, walking from my bed to my bathroom, getting dressed, making lunch, everything. I forgot what it felt like to not be exhausted. It was as though my whole body was melting; my limbs were ridiculously heavy with the strongest gravitational pull towards the ground. I’m numb, I’m weak, I’m exhausted, I’m scared, I’m confused, I’m depressed, – I’m overwhelmed.
Eventually most of my symptoms moved to my right side. My left side was by no means good, but it was certainly better than the right side. First positive I saw of this situation was that I am left handed. My smile sits higher on one side, I can’t use cutlery properly, I can’t carry things in my bad hand and one of my legs sort of drags behind me.
Perhaps the scariest moment so far was my first experience of paralysis. It was after a long day at work, where the most I had lifted was a cup of coffee in my good arm. The day was busy and the hours dragged on much like my leg dragging in attempt to walk. My good arm grew weaker until it was just as bad as the other. I could hardly lift a few pieces of cutlery; a fork felt like it weighed as much as a whole meal.
When I finished work I got a lift home and just sat in my room totally exhausted. My cat was sitting beside me in the bed, my right hand was sitting on him, slowly patting his back. After a while I realised I couldn’t feel his fur on my hand anymore. I looked over to see if he was still there, he was. I could see him under my hand, but as much as I tried I couldn’t feel him – at all.
I went to continue to pat him when I realised I couldn’t. I sat there for what felt like hours staring at my arm trying to will it to move but I couldn’t. I cried because I was frustrated, because I was angry, because I was scared. Was this it? Was this forever? First my arm, what next? Could I ever be normal again?
These plus a thousand more questions were running through my mind as the tears continued to run down my face. My mum came down to comfort me. She started to rub my arm so try and sooth me; I didn’t even realise until I looked over and saw her. It wasn’t even my arm. It was just a lifeless attachment hanging from my shoulder. Thankfully, the paralysis only lasted about eight hours but it was enough to scare the absolute shit out of me.
Right now I’m stuck in what feels like some sort of ‘limbo’. My body is so dysfunctional, my mind is so overwhelmed; my life has pretty much turned upside down. My routine has gone from a full on seven days of studying full time at university a double degree of law and psychology, working 20 plus hours a week waitressing, pole dancing at least three nights a week plus maintaining a healthy social life – to now being in bed seven days a week with TV being my only stimulation. Getting out of bed is such an effort that I hesitate to do so unless the need becomes impossible to ignore.
I know that I have two options right now – I can fall into depression and let a diagnosis become my identity or I can use this time to get to know myself and embrace the changes. The easier option is to fall into the trap of becoming my illness, becoming depressed and seclude myself from everything I used to know and do. Some days I feel like that is the only option.
Today I made the decision to say ‘fuck the easy way, I’m going to fight.’ Fuck being disabled, fuck being depressed, fuck the lot of it off. I’m going to use this chance to become the best possible version of myself. I am going to see every day as a blessing because at the end of the day, I’m breathing and as long as I am, I am alive.
There’s no point being alive if you’re not going to live. If you read this far, thank you. I hope by sharing my journey I can inspire others to say ‘fuck it, I’m going to fight’ to whatever they’re dealing with. No matter what you’re going through right now, whether it be medical or otherwise, join me on my journey of fighting this with positivity.