Finding the Light on My New Path With Multiple Sclerosis
One month after my 35th birthday, I woke up on a Saturday morning and my right hand and foot were completely numb. Having practiced yoga for many years, I pride myself on having developed a sense of body awareness. I knew right away that this numbness was not normal, and I tried to get through my busy day parenting my two young children. But, when the numbness persisted the next day, I knew it was time to visit my doctor. He was able to schedule an MRI quickly, and the next day I heard my diagnosis—multiple sclerosis (MS). Looking back, I feel I was lucky to be diagnosed only days after my initial symptoms.
MS has changed my life in many ways. I went from being constantly on the go to being much more of a homebody. I find myself occupied with monitoring my energy levels, keeping up with my medication and going to specialists, like dermatologists and ophthalmologists, to treat my MS flare ups and other health issues.
An MS diagnosis is difficult for patients, as well as their loved ones. I’m aware that my husband, Dan, and my children worry about me. They can’t understand exactly what I am going through, but they want to do everything they can to help. In order to help them support me, I have had to adjust my lifestyle and learn how to communicate more effectively and in new ways. Communication is vital in managing my MS. I now share the good, the bad and the ugly. All of it.
On days when I am feeling more run down than usual, I lean on Dan, who helps me maintain a level of balance—whether it’s making sure I take breaks throughout the day, reminding the kids how I am feeling or even helping to find my keys when my mind is fuzzy.
Dan has showered me with an incredible amount of support from the moment I was diagnosed, and I am thankful every day that he supports me both mentally and physically. While I was still reeling from the unexpected diagnosis, Dan went directly into problem-solving mode. Instead of worrying about how this would affect him or the kids, he immediately dove into researching MS and refused to let me sink into a negative headspace. There are still challenges, but we are dedicated to working together to overcome them, whether they are related to my symptoms or how to be more effective partners to each other and parents to our children. I wake each day filled with gratitude to have a partner that supports me at the level he does.
Although my husband has been my rock, I also will always be grateful for the online community that I found. When I was first diagnosed, my husband, parents, sister and I immediately went to the internet in a bid to learn more about the disease. I remember feeling so overwhelmed, as there was so much misinformation and it was difficult to tell fact from fiction. Alongside my husband and loved ones, the online MS community helped me find my path forward.
Realizing I wasn’t alone and that there were other people going through similar experiences spurred me into starting my blog, ModernDayMS.com. I wanted this to be a safe, positive space for those living with MS and their families to share their stories, learn from and support one another, get factual information and hopefully help others find their own support groups. While everyone experiences MS differently, it was a game changer for me to find my support group within the MS community. Learning I wasn’t in this alone felt like the first deep breath I was able to take since my diagnosis.
Since I created the website and social media accounts (@moderndayms), I have connected with fellow MSers from all over the world. Although we have not met in person, I consider many of these contacts close friends. We have virtually chatted, commiserated and shared advice with one another. These are the only people that really understand what it feels like to experience MS symptoms every day and what it’s actually like to live with MS. The value of these shared experiences cannot be overstated.
I know firsthand just how overwhelming an MS diagnosis can be, which is why I’m committed to spreading awareness of MS and the resources available for patients. One resource I recently learned about is MoretoMS.com. More to MS is an educational resource designed to help patients and their care partners manage MS symptoms, learn about the disease and offer guidance for discussing their journey with doctors, family and friends. It is a very helpful resource for the MS community because it clearly explains how MS affects each person differently, shares common symptoms and provides resources to help talk to your doctor about your experience. This is just one example of the many resources that advocacy groups, research organizations and others are continuously developing for the MS community to share new research, help educate and raise awareness of this invisible disease.
I don’t want to sugarcoat it – living with MS is definitely a challenge. If you have just been diagnosed with MS, take a minute. Remember to breathe. I want you to know you are not alone. Talk to someone living with MS. Lean on the support of your loved ones and the MS community. Talk to your loved ones. My MS community, friends and support group are a bright light in my life. You can do this.