There is nothing predictable or constant with multiple sclerosis. People living with the disease may have periods of time where not much seems to be going on. Other times, there may be relentless relapses that leave neurological debris in their wake. The high degree of adaptability required to mentally and physically handle these changes is tremendous.
Stability is a welcome blessing when it comes to living with MS or any other chronic disease. With stability comes some level of predictability. However, it doesn’t prevent the potential rollercoaster that changes, of any sort, may cause.
I’ve enjoyed a sense of stability for years now. In fact, I’ve only had one major relapse since December 2011 that occurred in February 2016. One reason for this streak of “luck” is a treatment that has proven to be effective for me. I’m what you would call a “responder” to the medication rituximab.
Recently I’ve encountered a threat to access of that same medication. Since I’ve been sick so many times during the past year, my doctor has ordered laboratory tests to check for levels of specific immune system components, called immunoglobulins. I don’t have the results yet; but based on concern for a potential immunodeficiency, my doctor has delayed my next round of infusions until we know more.
Learning this information temporarily threw me into an #MSMoment where the fears of the unknown and change collide. I’m concerned that if my immune system is deficient to a level that I can’t continue my current disease-modifying therapy, then I might relapse sooner rather than later. If that happens, what might be the next part of my body that MS attacks? That’s always the fear.
Living with MS for over 12 years, you would think that I might be used to the underlying fears that accompany this disease. The fear of losing neurological function, the fear of losing independence, the fear of saying goodbye to some part of yourself. Instead, each bump in the road brings each of the fears back around for careful review.
The fears of MS can be as much a rollercoaster as the physical challenges. To help myself deal with these emotions, I turned to previous articles I’ve written. In a way these words turn out to be an unintended letter to myself in the future.
The article I am finding most helpful right now in dealing with this potential bump in the road is “10 Lessons I’ve Learned Since Being Diagnosed With MS.” I am finding #7 to be the most relevant piece of advice right now:
Just as it’s okay to cry and get angry, it’s also okay to smile and feel happy. The most important thing (it seems to me) is to acknowledge your emotions, honor them, and to allow yourself to feel them fully. The more you allow positive emotions to flow, the greater they grow and thrive. The more you honor your own negative emotions, the more quickly they dissipate into smoke and float away.
As I await the results of the tests and the recommendations of my doctor, I will honor my feelings, respect my fears, and choose to believe that things will work out. No matter if I need to make treatment changes or not, I know that I am resilient enough to handle what may come and this #MSMoment will pass.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.