My first symptom of MS was the sudden loss of vision in my right, on September 25, 2020. We were six months into lock down, working from home, and doing remote school. Life was at a constant level of high alert. The rules were changing every day. News was addictive, and terrifying. Shocking antics from the White House were so common they had lost their shock value. Every day, there was a new story about police violence and racism. Anger and fear were all-consuming. We marched and chanted, and worried it wouldn’t be enough. And, we worked, and fed our kids, and tried to make space for joy.
Nothing particularly stressful happened in September. We had adjusted to masks, Zoom, and grocery delivery. It was just another day. Until I woke up unable to see.
Stress, illness, and heat are common triggers for MS. They can exacerbate symptoms or trigger a relapse. Stress is the most common, and the hardest to control. Stressful events often precede the first symptoms of MS. So, it’s no surprise that my first symptom of MS came in 2020.
Since then, I’ve learned a lot about MS. I know that it’s important that I manage stress, eat healthy, exercise, sleep, and rest. I use tools I’ve learned from mediation and yoga to calm myself. Tools that I had started to learn and use before 2020, and tools that I used to survive 2020. I use my breath to slow down my heart rate when I’m anxious. I recite mantras to calm my racing mind. I practice gratitude. I try to enjoy the moment, especially with my son. A snuggle, a movie night, a tickle fight. I turn on good music and dance, in the house or in the car. I try to get outside, soak up the sun when it’s out, breathe fresh air, and awe at the beauty of nature. Sometimes, I know that I just need to rest. So, I binge Netflix.
Overall, I’ve done a good job at managing stress. But, there are times when work or life gets the better of me, the stress overwhelms me, and I see the physical manifestations. My vision has mostly returned to normal, but it gets blurry from time to time. Sometimes it lasts a few minutes, or a few hours. The week of the Capitol insurrection, my vision was blurry for a week.
Heat also affects me. I am often cold. And, I’m a mom. So, a long, hot shower is pure bliss. But, now, if I take a long, hot shower, my vision is blurry for a couple hours after. When it snowed, my hands ached. When I spend too much time in the sun and get overheated, I can feel short of breath, dizzy, and exhausted. When I get over-heated or over-exert myself, I can get temporary hand tremors. Once, on a hot day, I got a sudden rash on my arm that went away a few hours later, after I cooled down.
I haven’t been sick yet, other than my reactions to the spinal tap and COVID vaccine. Alcohol doesn’t seem to agree with me anymore. Even a drink or two, and I feel sick the next day, kind of like a hangover. Dairy and sugar seem to be triggers, causing a similar hung-over feeling. I used to be able to drink caffeine all day with no issue, but now I have to switch to decaf or tea after my morning coffee or I get jittery and nauseous. Hormonal changes can also trigger MS. I’ve definitely noticed that PMS hits me much harder, so I’m not looking forward to menopause. Lack of sleep is another trigger, but I’m so tired all the time that hasn’t been an issue. Gone are the days of staying up late watching TV. I’m in bed with my seven-year-old every night.
Sometimes these triggers all converge at once. I had been avoiding alcohol for months because it seemed to be a trigger. Over the holidays, I drank and felt awful. But, I also indulged in dairy and sugar. So, I wasn’t sure if it was necessarily the alcohol. This week, I decided to experiment. On Friday night, I had one and a half glasses of red wine. I felt pretty buzzed. The next day, I woke up with a headache. I was tired and run down, a little nauseous, and just generally didn’t feel good. Then, I started my period. Saturday was a beautiful, sunny day. I met my mom for lunch and coffee, and we ran errands. I got over-heated and my vision got slightly blurry. I felt awful the rest of day, could hardly sleep with a stabbing headache, and still felt awful Sunday morning. Was it the alcohol? Hormones? Heat? All of the above?
Thankfully, I have some ability to control these triggers. I can limit and manage my stress, I can avoid certain foods and drinks, I can usually avoid extreme temperatures, and I can get plenty of rest. And, when I need to, I can skip a couple weeks of blogging. But, knowing if what I’m feeling is a symptom of MS or not is much trickier.