When Multiple Sclerosis Invades Your Life
How to cope with this mysterious disease — and support a loved one who has it
In my mid-40s, I was in the best shape of my life and at the peak of my career and family life. I’d just tested for and earned my first black belt in Kempo karate — and was brimming with energy.
But one evening at a karate class I noticed a numb patch of skin down my left arm. It extended, actually, all the way from my earlobe down to my fingertips. It didn’t hurt — it just felt odd. And it didn’t go away.
Invisible disabilities like MS can provoke hasty, judgmental behavior. People often look for overly simplistic solutions.
I finally visited my doctor, who poked me here and there, frowned, and sent me to a neurologist. This specialist poked me some more and told me I had multiple sclerosis (MS). MS is an unpredictable disease that makes the body’s immune system attack the myelin sheathing around nerve cells, which acts like the insulation covering electrical wiring. It can provoke almost any symptom, but the most common symptoms are fatigue, weakness, muscle spasms, dizziness, and depression.
My own diagnosis occurred 10 years ago. I’ve since learned what helps me to cope with this mysterious disability — and what doesn’t. It’s also become painfully obvious what family and friends should know about this chronic and lifelong disease.
Our Diet Is Just Fine, Thank You
MS is the quintessential “invisible disability” — for instance, I occasionally need a cane to help me walk, but mostly I look just like anyone else. Invisible disabilities like MS can provoke hasty, judgmental behavior and people often look for overly simplistic solutions — such as diet.
I don’t know if this happens to people with lupus or chronic fatigue or other invisible diseases — but within six months of my diagnosis, I had been repeatedly told my MS would go away if I avoided Nutrasweet, sugar, salt, meat, milk, gluten, fluoride, or cooked foods. I was told about aunts or uncles or friends or coworkers who had MS, but it went away after they started vegan, Atkins, paleo, gluten-free, or raw foods diets; or who saw MS magically disappear once they started eating royal jelly or megadosing with B12, or whatever.
If I had tried following even half of all that advice, it would have killed me a long time ago. It’s natural to look for villains or magic bullets in life — but life doesn’t work that way.
Repeat after me: No one knows what causes multiple sclerosis. Period.
A healthy diet is always a good idea, and if you’re on a prescribed diet for high blood pressure or weight or allergies or something, by all means follow that diet. But there is no credible evidence connecting MS to Nutrasweet, sugar, salt, or any other dietary factor.
[lz_bulleted_list title=”Multiple Sclerosis” source=”medicalnewstoday.com”]Multiple sclerosis (MS) is estimated to affect 2.3 million individuals worldwide. The majority of people with MS are initially diagnosed with relapsing-remitting MS (RRMS), which is characterized by temporary periods called relapses, flare-ups, or exacerbations as new symptoms emerge.[/lz_bulleted_list]
We Need to Keep Moving
Fatigue is one of those nasty Catch-22 symptoms: You’re tired, but exercise helps the fatigue — but you’re so tired.
Any movement at all helps fight fatigue and it is the single-most helpful thing you can do to combat all MS symptoms: fatigue, depression, weakness, stiffness and spasticity, muscle tone and maintaining muscle mass. That last part can be a particularly cruel symptom for older patients: Starting around age 35, it’s more difficult to gain muscle mass anyway, and MS can rob you of muscle mass. It’s crucial for MS patients to maintain what you have.
You don’t have to take on an Ironman Triathlon or train for your black belts, as I did. Instead, walk your dog, practice tai chi, or go swimming — swimming is an especially good choice for MS patients as an increased body temperature tends to exaggerate MS symptoms and sap your energy. Which leads to me to the Spoon Theory.
We Have to Count Our Spoons
To illustrate what it’s like to have lupus or other fatigue-inducing chronic diseases, Christine Miserandino of ButYouDontLookSick.com invented the “Spoon Theory”: Every day you start with a limited number of spoons — likening them to spoonfuls of energy — and each activity you undertake costs you a spoon. When you’re out of spoons for the day, you need to rest and replenish.
You can, of course, borrow spoons today against tomorrow’s supply, and we’ve all done that. We’ve pulled an all-nighter to cram for a test; we’ve put in extra hours on a work project. But people with MS, chronic fatigue, or similar issues must ration our spoons far more carefully — we usually start with fewer spoons for the day, and we can’t bounce back as quickly from exhaustion.
It’s a good life lesson in priorities we could all learn. Which activities are really worth your time and energy? As the saying goes, no one looks back and wishes they’d spent less time with family and more time at the office.
Multiple sclerosis is not a death sentence. It will change your reality — but we learn more about it all the time and treatments today are more effective than ever. Educating yourself is the best way to help yourself or a loved one manage the disease.