I was diagnosed with Optic Neuritis 12 years ago. My mother and a cousin on my mother's side both have MS; I knew in my heart it was in my future. I started having symptoms in 2014 but had just started IVF. In the time prior to diagnosis, I was tested for Lyme multiple times and had a number of scans on my back to check for damage causing sensory issues in my legs.
From July 2015 till August 2016, I was pretty much symptom-free and assumed that I was in the clear. By August 2017 I couldn’t ignore how much my MS symptoms were impacting my life with my new baby. I had my first MRI in October and Multiple Sclerosis was confirmed.
Because of how much my disease has varied the amount that has affected my life has varied as well. Sometimes I can almost pretend that I don’t have a chronic illness. Other times I can hardly believe that I can make it to work and care for my daughter. In the last two years, my life with MS has included increased issues with fatigue, brain fog, and sensory issues. When in a relapse my face, hands, feet, legs, and forearms are plagued with pins and needles and numbness. My legs and feet are the most affected and have the ability to be numb, burning and painful all at the same time.
I am supported by a strong family and faith community. I also have a wonderful medical care team that works together to help me manage my progression.
I can now, after significant amounts of physical therapy, walk unassisted for some distance. For longer walks, I will use a cane for additional support. For days out that involve significant walking, I will use a rolling walker to have quick access to somewhere to sit and for additional balance. If I am going somewhere that my rollator would not be effective (uneven terrain, narrow passages, stairs) I will use a pair of forearm crutches.
It is usually easy for me to stay motivated. I have a lovely daughter who is spunky and empathetic. Doing my best for her is always a huge motivator. I also write about what I am going through to help me cope. I write and illustrate children’s books as part of my self-care routine. When I am feeling like “I just can’t do anything” drawing and writing makes me feel successful. Sometimes that means using speech-to-text or drawing with a computer because my hands aren’t able to hold a traditional drawing tool effectively.
When you are first diagnosed it is an important time to let go of stress. It may mean letting go of unhealthy relationships; intentions of how your career will track; or expectations of your home and social life. Taking a step back and simplifying what your life looks like will make it easier, I believe, to focus on what is most important with the least amount of stress.
I remind myself regularly that although my life might not look like other parents, it is still full of love and we can reach our goals and support each other.
In the last year, I have become more active in Team Spinal Tap, a Bike MS team started by my cousin and uncle. I have also begun writing children’s books on the topic. In no way do I plan to make a business or career out of my writing but it does give me something positive to focus on when I am having a hard time.
