Learning to Ride Along With the Ebbs and Flows of Multiple Sclerosis

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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optimism, meditation, fear, emotions, judgment, reflecting, cog fog, positivity

I am uncomfortable amid ambiguity and unknowns. I find myself searching for rationale when, at times, none exists. I crave clarity yet mostly exist amid the fogginess of MS. I live this way literally and figuratively.

My lack of clarity grows with the wait for the COVID-19 vaccine. When I receive my vaccine has direct implications on when I can receive my disease-modifying therapy (DMT). I’m due for my infusion of Rituxan (rituximab) in two weeks. I will have to postpone as per National Multiple Sclerosis Society guidelines for the COVID-19 vaccine and DMTs. One must wait 12 weeks after an infusion of Rituxan to receive the vaccine. Once both vaccine injections have been received, a two-to-four week wait is required to resume Rituxan.

I do not have a date set for a vaccination. My DMT is postponed. As my disease progresses, so too does my anxiety. Whether imagined or real, I perceive my side effects to be exacerbated. With multiple potential contributors, I cannot infer that my infusion would help. I can say that it has helped me progress at a slower pace.

My legs are a good indicator of my disease state. They have been relentlessly painful. The deep, unrelenting bone pain persists, keeping me awake most nights. The density of my fatigue is profound and follows me like an unwanted shadow.

I have long since given up trying to make sense of my MS. The symptomatology, side effects, and how they relate to my life easily overwhelm my sensibilities. My attempts to make sense of this chameleon drain what little energy I possess.

I am deliberate about seeking and creating joy. I find the infectious chain of events to be a magic elixir against the pain. It brings a smile where there are tears. It enables me to hold on to hope even in its absence. Most of all, it allows me to accept those things I cannot change.

I am learning to walk away from problem-solving the quagmire that is multiple sclerosis. I am moving alongside the inevitable ebb and flow. Taking care of myself along this journey is paramount.

When I sail, I check the tides and winds, and adjust my sails accordingly. I cannot control the elements, but I can control my direction. The peripheral noise of this disease is ever-changing and overwhelming. Some days the wind is at my back and I can flow somewhat effortlessly. Other days, there is a brutal headwind, and it takes great effort to make my way.

Multiple sclerosis, like the winds, changes without warning. I am not going to sit and wait for the winds to align with my direction. Instead, I am going to become more adept at navigating my boat.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Lynda Viet avatar

Lynda Viet

You inspire me ! I have been trying to navigate these waters, but I haven't had the courage to pursue on high seas, when the boat is rocking and the wind is making my body is becoming out of control, then I become numb and I don't know how to move the stern to come hack.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Lynda,

Thank you so much for your kindness.

It’s okay not to know how to harness all that MS brings. As you so eloquently put, it easily overwhelms us.

Sometimes we just need one place to anchor ourselves. A moment to think straight. Time to center ourselves. These can be difficult to find, and I encourage you to find these moments amid the chaos. You are the captain.

I believe in you.

Warmly,
Jenn

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