Limits That Change
Growing up with multiple sclerosis (MS) is a never-ending journey of learning. Being diagnosed at 13 and currently being 22, I had to do plenty of learning, and I continue to do so. From these experiences, limits have been learned and continue to change as life goes on living with MS.
Upon diagnosis, I was afraid of what the future with the disease would hold. I knew there were various symptoms that may develop if MS progresses. My first few medications were not effective, and symptoms developed. My symptoms are a learning experience that have taught me much about myself.
The tricky thing about MS and the symptoms is that you are not guaranteed that the next day will be the same as the previous. Symptom intensity can fluctuate depending on various factors. Factors include whether you had enough rest, the weather/temperature, what you may have or not have ate/drank, to name a few that affect me. Learning these factors was a challenge, but it was not impossible due to all the resources available online and living life.
My symptoms started to appear my second year after being diagnosed with MS, which was also my sophomore year of high school. Vision impairments were my first sign of progression. The following year, I developed walking difficulties and discovered my kryptonite: heat intolerance. These two symptoms appeared during marching band practice in the Houston summer heat, which was not the best place to learn of new crippling symptoms.
After doing research, I discovered about Uhthoff’s Phenomenon. Uhthoff’s Phenomenon, also known as Uhthoff’s Sign, is when other symptoms temporarily worsen when the body temperature increases. This made sense with the heat intolerance and the temporary worsening of my walking, vision, and cognitive difficulties when outdoors or being extremely active.
There is no way to cure Uhthoff’s Phenomenon, much like the entirety of MS, but this was a great lesson to learn about limits and how MS is, as I learned, ever-changing. Every day is a new limit on how much heat my body is able to tolerate before Uhthoff’s Phenomenon becomes too overwhelming. I learned that once my vision starts to get funky that it is time to chill-out (literally) to avoid my legs from becoming noodles.
Physical factors are not the only factors that flare up symptoms. I have noticed that feelings and emotions cause my MS symptoms to temporarily worsen. Stress, anxiety and other negative feelings/emotions that run along that line make my symptoms flare up. Many people call me a calm and relaxed person, but little do they know if I let my feelings/emotions take the best of me, it will lead to the worst of me.
I am human, I am still young, and I tend to forget about my limits and push myself beyond them. And sometimes I do the opposite and restrict myself from doing things because I begin to overthink and start imagining worst case scenarios. Occasionally, I hit the sweet spot and enjoy what I end up doing without any regrets. Living with limits that fluctuate makes for tough decision making, but not impossible.
I know there are more limits to learn as I continue my journey through life with MS. With all that I have learned so far, I hope it will prepare me for any new challenges that may appear in the future, MS-related or not.
Address racial disparities and inequities in the healthcare system that impede access to care, and ultimately, a cure, for MS.