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When MS Gives You Summertime Restrictions on Your Comings and Goings

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I am locked in a personal war with heat and humidity. To me, they are more than mere summertime annoyances, inconveniences that cause one’s hair to frizz, make-up to melt off one’s face in a colorful oil slick, and perspiration to soak one’s clothing with unsightly blotches. To me, heat and humidity are my jailers.

Heat and humidity cause the signals between my central nervous system and the rest of my body to go haywire. You see, I have multiple sclerosis (MS), an autoimmune disease where one’s immune system attacks the protective layers on one’s nerves inside the brain and spinal cord. This onslaught of damage interrupts the lines of communication from my brain to the rest of my body. Some of the symptoms I experience — four years into my post-diagnosis, 40-something life — include: crushing fatigue, varying degrees of numbness throughout my body, weakness in my left side particularly in my hand, intermittent stabs of pain in several locations, seconds-long electric zaps up and down my spinal cord when I lower my chin toward my chest, periodic light-headedness and migraines, nocturnal leg spasms, sporadic difficulty concentrating, and severe heat and humidity intolerance.

That last symptom is the one with which I find myself locked in combat every time summer rolls around. It makes me feel as though I’ve done something wrong and have been grounded for some transgression, or transgressions, I must have unwittingly committed. My punishment? Being held under house arrest, confined to my house, where I am lucky enough to have air conditioning, until the heat and humid subside. I’m not very sanguine about this.

Here’s what happened during the few times I attempted to break out of my MS prison over just one July week in Massachusetts last year:

I walked around a small Cape Cod downtown at midday, when the temperature was in the 80s and the humidity was moderate. An hour later, after having browsed several shops in the small, seaside community, I found myself squatting down in a patch of shade on a side street, overcome with light-headedness, legs suddenly sapped of their strength. I violently dry-heaved in the direction the cobalt-colored hydrangea bushes as nausea overwhelmed me. The whole thing was pretty idiotic, in hindsight, but on that day, I stubbornly refused to accept that I couldn’t stroll through town like everyone else.

A picture of the beach at Cape Cod, during the sunset.

During a late afternoon in a Boston area suburb, I went to the local community-supported agriculture to pick up my weekly share of fresh produce. Since I was feeling fairly spry that particular day, I trekked out to the pick-your-own section to gather fragrant lemon basil leaves and fistfuls of cilantro. Within minutes of being in the fields under the 4 o’clock sun, I found myself in a familiar position: hunched over and gagging as bright, flashing spots illuminated the corners of my eyes.

Inside a screened-in porch on Cape Cod — when the temps were in the 70s but the humidity level was in excess of 80 percent — my elder son and I played with our 2-year-old Jack Russell-mix dog. Ten minutes into the frivolity, I was retching, plagued with sparkly dots decorating the periphery of my vision as my legs became rubbery and weak.

The moment during that week which made me really angry? When, on a hot and humid day, I got sick after walking the short distance from my air conditioned suburban home to the end of my driveway to fetch the mail from the mailbox. Although I was wearing a light sleeveless dress, had my heavy hair drawn back in a ponytail, and had slowly ambled out there, by the time I was inside the house, symptoms swarmed like mosquitos: nausea, flashing spots in my eyes, weakened legs, light-headedness.

From mid-June through mid-September, I am a kept woman, kept inside an air conditioned cocoon, forced to take a pass on most outdoor concerts, events, and parties if there won’t be a cool location where I can seek relief, where there’s no breeze to combat the heat and humidity. In order to visit the beach, it has to be after 4 p.m. and only if it’s not terribly humid. Years into this MS thing, I’m still struggling with the fact that the disease has imposed draconian restrictions on my comings and goings.

I’ve read the advice for MS patients about how to cope with heat sensitivity, which largely amounts to stating the obvious: avoid the heat and humidity. In the meantime, I’ve purchased and used cooling cloths. I tote around ice packs inside lunch bag-sized coolers. I once bought a handheld fan but that didn’t help much. Nothing has proven powerful enough to help get me through the dog days of summer.

The only item left in my toolbox — other than the expensive, under-the-clothing cooling vest I just bought but haven’t yet tested — is to make peace with my reality. “It could be worse,” I tell myself, imagining myriad other symptoms which could radically impede my ability to participate in daily life even more than what I currently face. I’m doubtful I’ll be able to be zen about all of this any time soon. Perhaps when I stop fighting with MS and simply start accepting it, the furious fire I carry inside me won’t rage quite so hot. Maybe then I’ll actually cool off.

Getty Image by lada_sher

Originally published: May 17, 2018
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