The ups and downs of multiple sclerosis have been nothing short of many emotional novels I have read.
Never in a million years did I think I would be diagnosed with a chronic illness or any kind of illness to be fair, but hey ho here we are.
Hiding behind a mask of my own composure
While I was being diagnosed, I had four relapses in close succession. After my first relapse, I composed myself very well, considering I didn’t have a clue what it was. Then I was diagnosed, and composed myself to hide it even better.
After my third (yes, I said third) relapse I was like “ok I’m fine with this”, when my fourth relapse hit I was like “ok now, you can kick rocks, pebbles, sticks and dust” this is me just being polite and not swearing. This is everything I was saying to myself but never showed anyone else. On the outside I was told I was handling everything very well.
My Thriller eye patch
The fourth relapse started off small but quickly grew into a BIG one, double vision, blurred vision in both eyes, optic neuritis and vertigo all at once (ever seen a baby giraffe in heels?). Please forgive me if my definition of a BIG relapse differs from yours, for me, losing my eyesight put things into perspective about how much I take for granted.
To help I wore an eye patch to gain better vision out of the other eye, all in an era where we are wearing face masks too (2020). I am sure I looked like an extra from the Michael Jackson ‘Thriller’ video lol.
A conscious decision not to downplay my health
In moments of frustration, I found myself conversing with my thoughts. At this point the left side of my face was paralysed, while the right side would not listen to what I asked. My eye movements looked like a poorly animated sketch from a 90’s cartoon that did not pass the pilot stage.
MS altered my appearance and my ability to speak and think clearly. I made a conscious decision that I was no longer going to hide or downplay my health to people. I said “I have MS, she does not know what she is doing and guess what…neither do I”.
Taking control of a situation you have no control over is a conundrum.
Taking my MS out of my head and onto Instagram
I started having conversations with my MS - I feel like we ALL have them. I just chose to give mine a platform on Instagram. Why? Because until further notice she remains with me…living rent free. Instead of having these conversations in my head, I thought “time to leave…you’re occupying too much space up there”.
I KNOW how serious my diagnosis is, but I will not be owned. I use humour to describe my MS to others and myself to help take that sharpness away from the reality I live with.
Me and my MS talk about everything
The videos on my Instagram page include conversations I have with my MS and introduce different symptoms I have, symptoms we all know can come and go.
People with MS and other chronic illness can relate to symptoms like balance problems, vision loss and fatigue. You will see me having conversations with all of them. Maybe not ‘fatigue’ as she is always sleeping!
I say that, but one of my #ConversationsWithMyMS shows my MS talking me into stopping fighting fatigue, but I’m reluctant (I never want to give in). In the video, my MS convinces me to lie down and even makes a little comment “she will lie down with me”. Sometimes she can be helpful.
Processing my MS journey through humour
Every time I experience a new symptom or go through an experience with my MS, I choose to process it with a humorous edge. I know this could be distasteful for some but for others it may be the little joke or comfort that is needed.
MS is not a death sentence for me, like I said it is just the part that lives annoyingly rent free *eye roll*.
My videos saved a part of me I didn’t realise needed saving
Check out one of my conversations and see if you can relate, do you have the same issues? My online MS community has made me realise I am not alone and never will be.
Doing my videos and releasing my inner thoughts and feelings have saved a part of me I didn’t realise I needed saving.
This MS Awareness Week (19-25 April 2021) we’re saying #LetsTalkMS.
MS can be tough, and for many people talking about it can be challenging. Help start a conversation about MS – share your story
Ways to talk MS
Our online sessions and webinars are a great way to connect online. You can also join the conversation at Facebook, Instagram and Twitter. And our MS Helpline is here for you, offering emotional support and information.