MS: nineteen reasons to not let go
A few days ago, I was reminded that 19 years ago, I was diagnosed with MS and trigeminal neuralgia.
In the back of my mind, it feels like forever, but like everyone who goes through life-changing or traumatic events, I can remember every little detail of that day, whether I like it or not.
In the grand scheme of things, so, nineteen years seems like 19 hours ago.
Because of this, you wouldn’t be wrong to wonder are any leftover issues like denial or anger after nearly two decades of living with neurodegeneration.
Or, How do you adjust to the physical challenges of the condition, as well as mental and emotional anguish?
Once you have accepted what you are now unable to achieve and therefore not possible anymore, what do you do with those feelings?
Does the new you feel like you are now living in the physical house of the old you?
Do you even want to acknowledge the new you?
Is what you feeling innate or not, or did they become learned behaviours?
Most importantly, how much of the old you is still left?
Lots of questions, few accepted answers.
For the past 19 years, I’ve gone through complex events that, at some point, made people think I was hexed. They had a point: five family members passed away in 3 years – my brother, nana and step-dad, three people I was closest to. Speaking of loss, it including an MS diagnosis and then my brush with death in the form of a superbug.
I lost them, but I also a part of myself.
Hexed, it sure felt as if I was.
But I refused to let it define me. Those 19 years could have been filled with learned helplessness, but instead the years were filled with adapted learned behaviours, something Charles Darwin might have referred to as survival of the fittest. After all, learned behaviour – adaptation – is required if you want to survive in an ever-changing life, environment and society.
Given the unpredictability of MS, every new day post-diagnosis has been a learning curve. Sometimes, that curve resembled a hill; other times, a mountain.
What is often unreported is that unpredictability is often caused by the domino effect of certain multiple sclerosis symptoms (but not all symptoms), and it goes like this:
Trigeminal neuralgia is utter hell, and even severe fatigue doesn’t allow me to sleep because of the pain.
Then, fatigue makes me fall asleep at the dinner table, or refuses to carry me to the fridge to get something to eat.
Eating, talking, brushing teeth, wind on my face and other banal triggers set off trigeminal neuralgia.
Ergo, onwards the cycle goes.
This is just one of the vicious cycles of life with MS, as other symptoms gladly join as you go about your day.
There is no denying the impact of neurodegeneration.
It is there.
It is biting, gnawing, dicing up your brain, spinal cord and optic nerves.
We know the damage it causes.
We know what is and what isn’t.
The confusion it causes is boundless as society asks us for physical proof of why we are so tired, why we have stabbing eye and ear pain caused by loud, sudden noises or by wind touching our face, and, of course, stress.
However, we never ask people diagnosed with cancer to prove to us that they have cancer. Nor do we ask them to stop feeling sorry for themselves when we don’t know a thing about life interrupted by cancer.
For some reason, however, people with MS are held to a different standard. There is a pervasive ignorance in which we have to prove what we are going through when we have been doing nothing but who we are.
No questions asked.
If anything, being diagnosed with an illness that has no cure asks us to help others without a voice, and show them that we can live authentic lives in the face of physical pain and societal ignorance. There’s endless potential if you open your mind and forget those fears that gripped you on the day of your diagnosis.
I had never expected to be forced to retire because of the above symptoms and more, and I surely never expected to turned into a writer, and winning some prizes while doing so.
Yes, the old me is gone.
The new me is more at ease with MS or any other condition I have, while also being more open to whatever medical issue may come next. Sure, I am not rich, nor will I ever be, but your health is your wealth.
So, be you.
Free yourself from the negativity others put on you. Embrace who and what you are. Eat that damn ice cream. Dance next to your bed to soften your fall if you trip over your own feet. Go to bed at 7 PM and sleep as long as you like.
There’s only one you. And you are damn impressive, even when your MRI scan images light up like a Christmas tree.
◾ Everyday Health: Top 10 MS Blogs to Follow in 2023, 2022, 2021, 2020, 2018
◾ Feedspot: Top 60 MS Blogs to follow in 2024, 2023, 2022, 2021, 2020, 2019, 2018, 2017
◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Blog Awards Ireland: Finalist 2017, 2015, 2014; Winner Best Blog Post 2018 (Awards competition discontinued from 2019 onwards)
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2024.
Share this:
2 Comments
Catherine.
Wonderful post. You said all the things I could not put into words. Always enjoy your posts.
legaleagle1128
Love your posts. So helpful as I have RRMS too