Jaime is a painter from Pittsburgh, PA, and has lived with relapsing MS since 2010. She signed the lease for her art studio the same day of her diagnosis.
I’m a painter, and when I was diagnosed with relapsing multiple sclerosis (MS), I had just signed the lease for my art studio. You can only imagine how frightening it was when I started having issues holding my paint brush. On those more challenging days, I knew I had to be creative if I wanted to keep painting. So I started taping my paintbrush to the top of my hand. I know it sounds strange, but oil paintings are more about shoulder movement, so it actually worked very well!
Of course, this trick didn’t work when I had to tackle smaller projects. Fortunately, being self-employed gave me the flexibility to shift the priorities of the day if I needed to. For example, if I was too tired or couldn’t hold the paintbrush, I would switch to answering emails or catching up on paperwork to keep my business running.
Relapsing MS is a disease that impacts more than just my work, so flexibility and imagination are important. For example, living in the Northeast, I’m used to the change of seasons and especially the colder weather, but relapsing MS has caused me to have issues with the heat. My doctor recommended a cooling vest, and now I rely on it almost year round to help manage my internal temperature. It's not something I ever imagined I would need, but it's now something I wear all the time.
I'm so fortunate to be in the care of a doctor I trust and with whom I can speak openly about my needs, goals, and expectations.
Life is a journey, and when I was first diagnosed with relapsing MS, I felt like I was lost in the woods. I felt alone and unprepared to deal with this chronic illness. My advice is to not focus on the "big trees," but to look for the trail of breadcrumbs and let them lead you.
For me, this included looking to my friends and family for support, seeking the advice and care of my neurologist, and finding a treatment that works for me. Focus on what you still have despite your relapsing MS, and you may be surprised by what lies ahead.
Jaime F. is a paid spokesperson for Biogen and has experience taking Tecfidera® (dimethyl fumarate). She may or may not be currently on TECFIDERA.