February 24, 2021
Tomorrow is my yearly MRI to check the progression of my MS. Diagnosed in 2019, I’m early on in my MS journey and still adjusting to regular medical procedures. The thought that I have to do this every year is definitely unsettling. Yes, I’m thankful to be able to monitor my disease and make course changes if needed. But why do I feel like I always have to do that…express my gratefulness? I am grateful and I do try to stay positive but you know what…that can get exhausting! And it robs me of the compassion I deserve and space to just feel.
It’s ok to feel scared, upset, worried. In fact, it’s absolutely necessary. Because, we all feel these things, especially my fellow MS and chronic illness fighters. Pretending you’re not feeling what you’re feeling doesn’t remove the emotion. Rather, it embeds that emotion deep within your psyche, trapping it in your bones. And it will manifest in all manner of unwellness in your life.
I wouldn’t say I’m claustrophobic. I keep my eyes closed the entire time during the MRI so I don’t even have to see the complete lack of space. The anxiety for me is the sheer length of time I have to lie there and the discomfort I experience. With brain, cervical and thoracic scans, they schedule me for just over two hours including the fifteen minute allowance for check in.
Lying still on a hard surface for that long, while my body temperature starts to rise and the MRI incessantly bangs away and emits alternating, headache inducing, frequencies is enough to make me want to burst into tears. The overwhelming stimuli feels like an attack on my nervous system. It makes lying perfectly still increasingly challenging as the minutes tick away. And trust me, I can feel each of them tick away.
The weeks leading up to this annual pilgrimage to hell always bring about anxiety, anticipating the uncomfortable procedure as well as awaiting the results. Hoping, praying that no new lesions have developed. Lesions, for the unaware, are spots of inflammation where the myelin sheath covering the nerves has been worn down or worn completely away and has then scarred over. This causes issues transmitting signals from the brain to the body and vice versa and can be accompanied by a wide array of symptoms.
And then, more anxiety wondering have I done enough this last year to keep this disease at bay? Am I taking the right DMT, (disease modifying therapy)? Should I switch to a higher efficacy DMT to preserve as much possible of this cognitive and functional reserve that I currently possess?
And then there’s my lifestyle. Staying active has proven difficult in subzero temperatures but I do what I can to move every day. Then there’s that dirty D word….diet. Ugh. It’s been super challenging maintaining a healthy diet throughout a pandemic where I’m largely isolating due to my MS and wonky immune system, and then throw in a breakup as the cherry on top……oooooh yes, a cherry on top of a hot fudge sundae with whipped cream, sprinkles…..oooops, off track there. Where was I?….ahh yes, diet.
This is a serious struggle for me. I started off so well when I was first diagnosed, when everything was new and extra terrifying. But I’ve drifted far from where I started. My lab work I did the other day will likely highlight some diet changes I need to make going forward. And that hopefully will be the motivation I need.
So in the mean time I just breathe, do what I can, give myself grace and compassion for all the emotions I’m feeling. And know that I can begin today to make healthier choices. I can cry today and maybe laugh tomorrow. It’s a struggle some days and I’m learning to not fight back against that. I don’t have to have all the answers today and I don’t even have to smile and be hopeful today. I can save that for tomorrow when I’m done with my MRI and continue just living life with an incurable disease.
It’s a bit like that ship in the painting behind me, navigating unpredictable waters. Some days the waters will lap gently at my side, swaying me gently back and forth. And other days….well…I’ll deal with those days when they arrive. That’s all I can do really, live one day at a time. And realize, that perhaps I’m actually the sea in that painting. Vast and all encompassing. Some days soft, some days wicked. But I’m always directing whatever arrives and tries to float across my surface. I rather like that analogy, me as the sea and my disease as the ship. Though my MS tries to steer through my life, ultimately, I have the final say.