What do you do when heat exhaustion and the MonSter don’t mix?
It's that time of year. You know what I mean. The sun is shining, bikinis are on sale, coolers are loaded, and summer invitations are distributed.
Unfortunately, a majority of MS Warriors face the disappointing reality of being inside looking out. According to a May 2022 study by the National Library of Medicine, between 60% to 80% of patients with multiple sclerosis (MS) exhibit Uhthoff’s phenomenon with heat exposure.
Uhthoff’s Phenomenon (also known as Uhthoff sign or Uhthoff syndrome) is described as a transient worsening of neurological symptoms related to a demyelinating disorder such as multiple sclerosis when the body becomes overheated in hot weather, exercise, fever, saunas, or hot tubs.
I know. That’s a mouth full and likely not to resonate with, well, just about anyone. Severe intolerance to heat is one more reason MS Warriors are misunderstood. We're not whining. Our world is just so difficult to explain.
Typical responses to not attending a summer event make my guilt more prevalent. “So, it’s hot out. We can find a shady spot for you.” “Don’t be a wuss. It’s summer. It’s supposed to be hot.” “Oh, puh-lease. You’re such a diva.”
How can we explain the inexplicable?
Thirty minutes is about as long as I can last in the heat, and even then the after-effects are horrific. My vision blurs and sometimes fades; My legs turn to jello; my Fingers no longer function; Tremors replace balance. This is only the beginning. As I struggle to remain upright, Migraine Martha taps a warning and I realize I’m seconds away from a full-blown meltdown. That thirty minutes of sun equals hours, possibly days of painful fatigue. Fatigue exasperates many MS symptoms, such as muscle spasticity and cognitive functioning.
I thoroughly enjoy a splendid summer soiree, but know the risk. The invitations don’t come as freely anymore and I understand. I just wish those party “friends” understood as well. Early in my diagnosis, this desire was so, so important. Twenty-plus years later, I am content to watch the cornhole game from the shady porch. (Now, if it’s a croquet match, I might crawl around the yard until my ball is eliminated; which rarely doesn’t take too long. I LOVE croquet :)
This weekend is big at our camp in the mountains of West Virginia. Independence Day is full of lawn games, fishing, ATV riding, socializing, and sunshine (if the forecast is correct). As I look forward to this annual celebration, I also mentally prepare myself to be mindful of the MonSter. Twenty years ago, I would have spent (wasted) time justifying myself. I don’t feel that need any longer.
If multiple sclerosis has done anything for me, it has given me a voice. I no longer make excuses. I just tell it like it is. The truth is I cannot play in the sun and that’s that.
That doesn’t mean I won’t enjoy my porch perch where I read, write, listen to music and enjoy an adult beverage while conversing with folks whose opinion of my actions matters not.
It’s going to be a fantastic little vaca. I can’t wait!
Happy Fourth of July!