NO ONE SHOULD FACE MS ALONE!
Can you imagine waking up one day unable to do the everyday things you would usually take for granted? Like not being able to see properly (or at all), unable to get out of bed, walk to the phone to call someone – anyone – or live a life without pain?
All of a sudden, your world has changed.
Multiple sclerosis is a chronic and often debilitating disease which attacks the central nervous system (the brain, spinal cord and optic nerves). It is the most common neurological disease in young adults and often attacks people at a time in their lives when they are planning families and building a career. Three out of four people living with MS are women.
With your support, we can allow people living with multiple sclerosis access to vital support services, like MS Connect, MS Peer Support and MS Employment Support Programs. We’ll also be helping bring new treatments closer to reality, investing in repairing myelin damage to restore function that has been lost for people with progressive forms of the disease.
On behalf of over 33,300 Aussies living with multiple sclerosis – THANK YOU FOR YOUR SUPPORT!
My Updates
My journey with multiple sclerosis
Saturday 19th Apr Hi :) my name is Juliette and in February of 2024 I was diagnosed with multiple sclerosis.My diagnosis was relatively fast, which I am incredibly grateful for. That's not to say it didn't come with it's challenges. It's a similar story for a lot of people dealing with chronic illness' or diseases, I went to multiple doctors, hospitals, emergency rooms (just to be sent home after 10 hours and being told I probably just have anxiety), no one took me seriously until I completely lost the vision in my left eye.
My eye had started acting funny weeks before this. One day I was driving to the gym, - after forcing myself to leave my bed, as I was already struggling with the fatigue -, I noticed that I had double vision, blind spots and saw "rainbow" colours. Irresponsibly I still drove to the gym, only to arrive and decide that I was just too exhausted and couldn't see properly so, I drove myself back home and went to sleep.
At this point I had just moved back in with my family, I could hardly help with the move due to the fatigue, I genuinely couldn't keep my eyes open for more than a few hours without falling back asleep. I also felt incredibly weak. To this day I wonder how things would've turned out had I still been living by myself, it was mostly the people around me that could see something was wrong, my cognitive state was so impaired that I couldn't put two and two together, I simply thought I was just burnt out.
There were so many things I noticed but shrugged off, pins and needles all over my body, tremors in my hand that I could not control, when my skin touched a surface like a table, it felt like the area exposed was being burnt by ice. I was slowly but surley... then very quickly loosing all my balance, I could not walk without the support of either a wall or someone else's arm to hold me up and balance me. Many times I had tried walking from my bed to the living room and fallen to the floor, very briefly blacking out. The fatigue was so bad that some days I just lay in bed with my eyes closed, waiting for the energy to go on my phone. I had so many symptoms during this initial flare that I even forget some of them, or don't want to mention because it's too embarrassing. I also had symptoms after coming home from the hospital, like all of a sudden having no idea what I was talking about during a conversation and having slurred speech. This one caught me off guard and really scared me.
So, the day finally came where I lost all vision in my left eye. Thankfully I already had a doctors appointment booked this day, I wanted to update my GP that my symptoms were only getting worse, very quickly. After I told him about my eye he told me that this is considered a medical emergency and sent me to the Eye and Ear hospital on Melbourne (2 hours away from where I live) That day me and my mum drove down. A few times prior to this I was wondering if maybe something was wrong with my brain, but on my journey to the E&E was the first time I considered that maybe I was dying. We waited in the emergency room for I don't know how long, all I remember is that it was longer than my 10 hour visit a few days before. It was horrible but thank GOODNESS for my iPad. I so desperately wanted them to tell me it was a quick fix, but I knew by their concern and the need to call multiple nurses and Dr's in for consideration that I was going to be in that hospital for quite a while longer.
And so, I sat in the most uncomfortable emergency room chair, not slept for gosh knows how long, waiting to be transferred to another hospital. My mum having a well deserved nap in the car. Finally, after the best apple juice of my life, I was transferred to St Vincent's hospital. Very long story short, I went through a range of tests almost every day, MRI's, put on a steroid drip, be pushed around on a wheelchair - while there is no shame in this, as someone who doesn't like asking for help this was actually really hard for me to accept - and I had so, so, so much blood taken from me for tests. I've never seen that much blood in my life. After 7 days I was finally discharged, my vision, balance, strength, co-ordination, energy, all coming back, I couldn't believe that 7 days earlier I very genuinely thought my body was completely shutting down. I am incredibly grateful for medicine and science.
I drove home with my big sister, Jess <3 and we got yummy frappe's to celebrate. Also going home with massive bags of medications (steroids.... sigh)
Anyone who has been on a high dose of steroids know why I'm sighing. The steroids helped me regain my mobility however, they also completely changed my body. I put on about 15kg, after already putting on weight from not being able to move or cook healthy meals for myself. I had moon face, excessive sweating and my self esteem had never been this low. I couldn't look at myself in the mirror for a really long time without hating what I saw. I'm happy to say that the confidence in myself is coming back.
Fast forward to today and I am doing really well, I take my Ocrevus infusions every 6 months and MRI's to keep an eye on that brain and spine of mine.
Being diagnosed with these disease has taught me so many things, how important community is, how lucky I am to live where I live, how short life is and to not take it for granted. My heart also breaks those who are not in the same privileged position as me.
If you've made it this far in the post, thank you. If I'm being honest there are many things that have been left unsaid, I think this post is quite positive, because there are a lot of good things to look at. However, it was incredibly dark time in my life, often times holding back tears when people would be insensitive, when I realised how inaccessible the world is, the feeling that those around me will never understand what it feels like. Writing this has been a nice opportunity to express some of those feelings, but also put into perspective what a beast of a disease MS is.
Although I may not know what the future looks like, all I can do is live in the moment (well, maybe preparing for the future just a tad). I am now working toward goals that I've had on my to-do list for a very long time, I decided there was no point waiting any longer.
There are still so many unanswered questions when it comes to MS, being able to be apart of this fundraiser means so much to me.
Thank you for reading,
love, from,
Juliette xxoo
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