Because of NMOSD, I can’t wait to say goodbye to summer
My disease and its treatment have made sunshine painful
As summer winds down, I’m eagerly awaiting the return of fall. I love fall fashion, and I can’t wait for a break from the intense sunlight.
After more than a decade of remission, my rare disorder, neuromyelitis optica spectrum disorder (NMOSD), reared its ugly head this summer, causing absolute chaos in my life. While I continue fighting for a new form of normalcy, I also need a fresh start — a new season.
I love the sun, and summer is one of my favorite seasons, but I haven’t enjoyed it in a long time. As a family, we used to make it a priority for me to get sun time, because sunlight is a primary source of vitamin D, which is crucial for bone health and immune function. However, it seems like a cruel joke for those of us with NMOSD, because the sun is now my enemy.
As the years went by following my diagnosis, the medication I took for NMOSD changed how sunlight affected me. Before, I’d get a nice, golden brown tan. But when I started taking medication, small changes began happening that became more pronounced every time I went outside. My sun-kissed tan turned into a harsh red fire across my body that would happen instantly.
Because of the sun rashes, one of my favorite pastimes, gardening, became painful. I used to enjoy spending endless hours in our backyard, pruning my roses and tending to the vegetable garden. But now photosensitivity makes those things impossible. It’s also difficult to regulate my body temperature when I go from cool air conditioning to intense heat.
How can something that feels so good be so bad for me?
Before NMOSD, I never thought about the number of activities I could enjoy outdoors. Now, because of my rare disease, I must limit things like taking long walks, riding bikes, swimming, and reading on the beach. These are only some of the things that NMOSD has taken from me, and it’s why I look forward to the fall.
Plus, fall fashion — the cape jackets, tall boots, chunky sweaters, and plaid shirts, all quintessential Canadian attire — protects my skin and masks the damage that’s been done, such as the scars I have from intravenous lines and a port we used for plasma exchange. I’ve been fortunate that my version of NMOSD is mostly invisible, but when it’s not, people ask so many questions about it.
The sun will always have a warm place in my heart, but with NMOSD, it’s certainly challenging.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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