The views an opinions expressed in these blogs are those of the authors and do not necessarily reflect the views, values, or policies of Spoonie Village or other organisations. Assumptions and assertions in the posts are those of the authors solely.
We are critically-thinking beings, views and opinions are subject to change, revision, and rethinking at any time. Please do not hold the authors to them in perpetuity.
I’ve arrived at the ‘10 plus club’
By Claire Thackray
I was diagnosed with Relapsing Remitting MS in 2010 and now, as I find myself in the ‘10 plus club’ (i.e. a decade since my diagnosis) I feel so thankful and surprised I'm able to say I experience more good days than those days that are somewhat more challenging. In 2020 I became an Ambassador for a global charity, #shift.ms.
After weighing in at 66.6 kilograms and having a blood pressure reading of 136/96, I had a slight inkling that I might be doomed. The long-awaited results from all of my tests were now available. Finally— six months after a bout of optic neuritis, it was time to learn my fate.
My consultant neurologist got straight to the point and gave me the news I had simultaneously pre-empted and dreaded.
“Claire, I'm sorry to say the results of your MRI scans, lumbar puncture and blood test are entirely consistent with multiple sclerosis.”
My stomach twisted with anxiety. I knew it...
I closed my eyes and tilted my face up towards the ceiling. "MS is an autoimmune condition which attacks the myelin surrounding the nerves after your immune system has mistaken itself for a foreign body like a bacteria or virus," said the neurologist, taking a moment to pause briefly.
My body seemingly had frozen to the blue plastic chair. I couldn’t move.
"You appear to have had clear-cut symptoms disseminated both within time and space. We call these exacerbations or relapses," he confirmed. "Any damage to the outer coating of your nerves interrupts signals from your brain that tells other parts of your body what to do and when to do it, hence the various neurological and sensory symptoms you’ve experienced."
It took several swallows to push back the flood of emotion that was on the brink of engulfing me. “Okay… Thank you," I said, opening my eyes. What happens next?
Now, as I reflect on the first decade of officially living with my MS, I still find myself pondering the same thought- What happens next? The only difference is that I now sit here feeling both thankful and surprised, rather than being petrified and ablaze with nervousness. In hindsight, for me, the psychological struggles of having MS have been far more challenging and domineering than any of the physical symptoms. While my body has more often than not enjoyed warm, summery MS-free days these past 10 years, my mind has frequently been subjected to the depths of winter.
I have learned the importance of doing everything I can to promote and uphold my physical and mental wellbeing. I’m still learning to listen to my body before it's too late and I admit, I don't always get it right, even after all this time!
I was fortunate to receive an early diagnosis. I started taking a DMT within a year of being diagnosed. I took Avonex once a week for eight years and then two years ago I moved onto Tecfidera. I eat a healthy, varied diet, but had an allergy test to determine the foods that do not agree with me and altered my diet accordingly. I take daily vitamin D3 supplements and ensure I exercise whenever I feel like it.
I never thought I would be in the fortunate position to say this but sometimes I feel like a fraud. I know my MS may ambush me… one day… however, that day isn’t today. I have shared my experience and what has seemingly worked for me above. Knowing the darkened shadows that a relapsing-remitting MS diagnosis can cast, I offer this information with the hope that it might be of some comfort to those who also find themselves being forced into beginning a similar precarious journey.
For anybody diagnosed with MS, I wholeheartedly recommend joining Shift.ms, a global network of over 37,000 people living with multiple sclerosis. Shift.ms is here for you - to talk openly and honestly about what you're going through. Visit www.shift.ms for more information or follow @shift.ms on Instagram.
@sparkz70 on Instagram
Full post reading by Jenni Pettican