Summer Heat and the MonSter
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!
The MonSter was first detected as early as 1300, but not assigned a label until the 1800s when the medical field recognized the mysterious symptoms of MS a nervous disorder (paraplegias). One doctor in London noted in a lecture that the disorder was not sufficiently interesting to discuss further. (Probably a world-class jerk.)(https://multiplesclerosis.net/living-with-ms/history) I beg your pardon!
Do you have a love/hate relationship with your MS meds? In the early days of neurological experimentation, patients were subjected to some crazy remedies:
As science advanced, doctors studied cells and discovered the origin of myelin. When Dr. Thomas Rivers found MS was caused by changes in the nerve tissue rather than a virus, research took a more advanced turn. The National Multiple Sclerosis Society was founded in 1945, which led to the establishment of the National Institute of Neurological Disorders and Stroke. (Prior to official diagnosis, I was treated as a stroke patient.)
CT scanning and MRI (magnetic resonance imagery) became a standard evaluation of the existence of the MonSter. The emergence of corticosteroid therapy (steroids) was and remains a common treatment for suspected multiple sclerosis.
If you’ve been diagnosed, it's no big mystery that you are your own best advocate. Doctors are wonderful resources, yes. We depend on the medical profession, as we should. Without the dedication to the practical knowledge of professionals, we might still receive electrical shock treatments or burned at the stake like a Salem witch. Although we still own a fear of the unknown, facts are easier to find out in the 21st century. (Fingers crossed.)
The more we know, the better armed we are for defense. There is always room to learn.
Recently, my neuro and I agreed that it’s time to change my DMT(disease-modifying treatment). Of course, this requires a fresh series of medical tests and prescription research. To this point, I have used Beta Seron, Tecfidera, Copaxone, and Gilenya to battle the MonSter. Kesimpta is my new drug of choice.
While reviewing recent test results, I found that I am positive for JCV. My heart stopped. A positive JC virus result means I am at a higher risk of developing PML. (progressive multifocal leukoencephalopathy).
Before crumbling into a ball of sodden tissues, I (FRANTICALLY) messaged a nurse (and MS Warrior) friend. Her words reassured me.
“Don’t freak out. Just about every person in the world has a positive JC virus. Mine is high as well, that just means certain MS medications are riskier. However, it is good to know where you are so you can make informed choices.”
Thank you, Jane! (Proof that human support is essential.)
This is YOUR disease. Read. Converse. Learn. No question is a stupid question.
JC virus and PMLThe JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been…mstrust.org.uk
There are so many MS resources out there. Penelope Conway is one of my favorite MS bloggers.
Pick Your Battles
Life is not always a picnic but it’s easy to chase away those pesky ants if you pay attention to what is within your ability to control.
Years of living as an MS Warrior have taught me who and what is truly important to a happy existence.
People are going to talk no matter what. Society loves to criticize. Even when they have no clue what they're saying. I’ve been accused of faking my illness when my accuser preferred a more sensational explanation.
“You say you’ve got MS but it looks like you’ve just had too many drinks!”
I could not control her reaction to my stumbling gait nor was it worth the time of arguing. I am who I am and MS is what it is. The thought of clueless onlookers matters not. It can be hurtful, yes, but “what doesn’t kill us makes us stronger”; or so I’m told.
While we cannot control the reactions, decisions, and behavior of others, a secret weapon of every MS Super Hero is that we CAN control our own.
Choose your battles. What influences do you surround yourself with that are instrumental in molding your own attitude? Social media, daily news reports, he said she said issues all feed the framework of YOU. Take a close look at where you direct your energy. Are you concerned with bettering yourself? Do you choose healthy alternatives for creating a peaceful existence for yourself? Are you quick to offer unprecedented opinions?
Common Sense — Wait! What is that? — tells us that our actions reflect our intent. What exactly IS your intent?
Be picky about the world with which you surround yourself. Know that control is within easy reach if you just look for it.
Have a great day,
Lisa, Lady With the Cane