Finding My Way Through Sickness and Sadness with SPMS
I am hyperaware of the fragility of life. More specifically, the fragility of mine.
Secondary progressive multiple sclerosis is an autoimmune disease. My immune system eats away at the myelin sheath surrounding my nerves. My disease-modifying therapy is an immunosuppressant. This further weakens my immunity.
I have known this truth since my 2010 diagnosis. Yet, only lately have I felt its harsh ramifications. This is day 10 of house arrest. What began as a bad cold morphed within days into influenza type A, with fever, malaise, aches, fatigue, and incessant coughing. This flu’s virulent nature was no match for my body. Ten days, Tamiflu (oseltamivir), and several nebulizing treatments later, I still possess a chest cold. I knew I would be hit. I had no comprehension of how hard.
I cried childishly while feverish. In the hallucinatory heat, I yearned for my mom. I held my golden retriever and let the tears fall. Hours turned to days as my body fought. The flu virus elicited a hospital-acquired infection. Low immunity means my body is in check.
Lately, it seems to reside there. Precariously so. I cannot help but be acutely aware. How can the same body that spent summers sailing and winters skiing have trouble walking? The same body that spent hours dancing now sways involuntarily. What came naturally is now done with intention. My slurred speech leaves me with social anxiety. I become nervous when I cannot swallow. Both dysphagia and dysphasia vary in severity. The only certainty is their presence.
A quiet melancholy has settled in, and it’s a sadness only understood through loss. I grieve myself. I miss her. Yet each day I decide to find the pieces. My grief is hidden by sheer determination. It’s a will to survive, coupled with a demand to thrive. But the loss overwhelms my senses. They ache, yet I leave them exposed. I expose my eyes for beauty, my ears for a song, my touch for another, my smell for spring, and my taste for satiation.
I am vulnerable in this phase of discovery. Every day it takes more will to accommodate what MS has taken. Yet every day I receive gifts as only MS could bring. The duality never ceases to amaze and astound. Through grief and loss, I find my way.
The pathway is dimmed, yet I walk. I will find my way back to myself. Checkmate can wait.
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Comments
Donna
I hear you! This disease really sucks! I have PPMS diagnosed in 2009. According to my neuro there is no medication for me. So I am on my own.
What does keep me going is Pilates sessions three times a week and massage twice a month. The cheerful, positive company and gentle routine is very helpful and sustaining. I’m still walking around - independence is so important - and plan on continuing to keep it up. I strongly recommend you get out and enjoy some sort of class as well.
Jennifer (Jenn) Powell
Thank you so much for writing. I appreciate your suggestions.
When not sick I do outdoor meditation and stretching which really does helps. Getting outside of this disease is so important.
I herald your ability to find gratitude and joy. They are each so integral to thriving with MS.
Kindly,
Jenn
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Brian
I very much identified with the post by Jennifer Powell. She expressed precisely how I feel after 10 years living PPMS. I am daily reminded that I’ll no longer enjoy remote hiking adventures, skiing snow covered mountain trails, or helping a neighbour rake his grass. MS has stolen so much.
Phil
I know what you mean...
Jennifer (Jenn) Powell
Phil,
As only we can. Hang in there my friend.
Kindly,
Jenn
Paula
68 now. Having this pain in the ass disease for a longtime now I’ve come to the conclusion that it’s just now getting hard for me. Up to this point it’s been doable. Now as I enter that stage of life where everything goes bad anyway has it’s own set of new challenges. When do I need to just go to a nursing home? My wonderful hubby’s determination however admirable it is, has me thinking. I’ve always insisted he have days off from my care and family time with kids,alone. Fear I’m not doing enough for him. I can still cook and clean up with his help and we love it. Love our life. Guess I just fear the day I’ll stop being too much for him. Hope these knucklehead kids tell me like they promised.lol. Just felt like venting. Thanks gang!
Jennifer (Jenn) Powell
Paula,
I love and appreciate your candor. I am a straight shooter myself.
It is hard to be as reliant as we are on another, especially our spouses. I am learning not to think for mine ( although I do I just don't say it haha). I try not to project my own guilt onto him as he would not be here if he did not wish to be. That said it sucks as we feel like a ball and chain. We are not any more than they are to us. Your life is so evidently built on humor and mutual love and respect. That is a recipe for the desire to witness you in every form; sick, well and everything in between. After 24 years of marriage I am just learning that.
I'm taking a bet that those knuckleheads will do just that. Your family sounds lovely. I appreciate the time you took to vent. Thank you.
Kindly,
Jenn
Diana
Hello! I came across this recent post while struggling through my day after a 2:30am wakeup. The lack of sleep is affecting all of my faculties, and there's still more of this day to climb. I'm writing from my bed, with my dog at my feet, grateful for the sun, and for people like you who are willing to tell the truth about MS. Thank you!
Jennifer (Jenn) Powell
Hello Diana,
I appreciate the time you took to both read and respond. I smiled when I read about the dog at your feet. They are precious, aren't they? There are indeed days I feel this disease has taken so much. And it has. Yet, I hold onto the moments in between which serve to remind me of the beauty that still remains. I hope you were able to get some sleep.
Kindly,
Jenn
luis
Nice text
Peace
Luis
Jennifer (Jenn) Powell
Thank you so much Luis
Kindly,
Jenn
Leanne Broughton
Nicely said. I am not a writer but my thoughts exactly. My dog, my forever companion though we no longer walk together, is always unwavering by my side. Thank goodness for our animals. My family also by my side. Sometimes I think they don't get it - it wasn't meant to be like this. I grieve what would have been. Thanks for listening. Feel better soon.