The Difficult Choices We Must Make While Living with MS
Last updated: June 2018
It’s no secret I’ve been ill on and off for the past year. With four added diagnoses all having to do with my digestive system, my MS has flared more than once. Stress and anxiety have skyrocketed, so I try to remain as calm as possible by holding onto positive thoughts and meditating whenever I can. I’d be lying if I said it’s been easy. I wish I was like others who put their faith in some Divine Being who’ll guide their way. I’ve never been able to do that, although I wish I could.
CMSC Annual Meeting
Next week there’s a big MS event taking place, one I’ve been proud to be a part of for many years. It’s the Consortium of Multiple Sclerosis Center’s annual meeting and I am their official blogger. I enjoy attending because I have an opportunity to listen to important and crucial presentations as well as meet and interview countless medical professionals who are committed to creating a better world for our community.
My diagnoses have placed me in a difficult position. I don’t know if I’ll be able to attend. Between flying, catching a shuttle, and attending the four-day event, the possibility of not being close to a clean bathroom, and dealing with the pain and cramps that come with it, is unnerving. I am also (more than) anxiously waiting to hear from my gastroenterologist whether or not I have C-diff, a bacterium that can cause symptoms ranging from diarrhea to inflammation of the colon.
I can’t make a decision. My heart wants to go but my brain says I should stay home and heal.
I often think how nice it would be to sail through life without thinking about illness, doctors, medications, insurance or finances. I even miss reading books that have nothing to do with health. Here’s what’s on my nightstand right now:
- Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall
- The Gut Balance Revolution: Boost Your Metabolism, Restore Your Inner Ecology, and Lose the Weight for Good by Gerald E. Mullin, M.D. (I skipped to the chapters applicable to restoring gut health)
- The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases by Amy Myers, M.D.
Thirty-one years ago I had to learn all I could about MS. Now I’m back at square one. I have to find another new normal, one that includes a new eating plan because my four diagnoses tell me I have to eliminate not only gluten, sugar and dairy but also tomatoes, onions, garlic, citrus fruits and juices, and an assortment of other items according to the FODMAP diet.
I miss the old me, the one where my stomach felt fine and I could eat whatever I wanted. I miss when my MS didn’t invade my body and I could walk and run in the sun.
I miss not having to answer questions like “Are you reall sick? You look fine.”
A tinge of jealousy
I try to be happy for everyone, and I usually am. But every once in awhile I feel a tinge of jealousy when I see social media threads flooded with vacations I’d love to enjoy, women’s studies abroad I’d like to attend, or fun social events I wish I could join. I'm so tired of having to say no, or to not have the means to join in. Living with a chronic illness certainly isn’t easy. At the very least it helps us develop certain character traits. But the choices we’re forced to make because of them aren’t always easy. After three decades of MS, I’m still having trouble choosing.
Next time I write I hope I can say I made the journey to attend the CMSC event. We shall see.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: