By Kristi Krause
Last summer I was mid-relapse and hating life. I like to think of flares and relapses as living in a “dark cloud of despair”; a type of brain fog that grows thicker, heavier and angrier as the day wears on to slowly smother the life out of you. Invisible, yet it can not be ignored. Working then felt disastrous, but my patients and coworkers never caught on to my struggles. I was new to MS and beyond frustrated at how much power it had over me. By lunch break, I would send a hysterical text to my husband, “I just can’t do this anymore”. He, my neurologist, and reality joined forces to try to nudge me toward leaving critical care. To that, I stubbornly responded, “Absolutely not, it’s my comfort zone!” The fear of a future reviewing charts in the muggy, stale basement of the hospital fueled my search for help with symptom management.
I read about how cooling measures increase the transmission ability of nerve impulses through areas of brain damage, but had no idea that there were vests, scarves, and gloves made for this purpose. The thought of wearing ice sounded miserable because feeling cold is fairly loathsome. I was desperate when I put it to the test one day at work. Between the disaster direct admission to ICU and my tracheostomy patient having hourly panic attacks, I was severely fatigued by first break. I escaped into the supply closet, grabbed an ice pack to put on my head and five minutes later, the brain fog was gone and I was high. It was almost as glorious as a double espresso shot! Returning often to the closet for the next fix, I became an instant ice junkie.
I started browsing the internet for cooling items and ordered most of what I found. Some were duds and others a godsend. I worked with wearable ice packs under my scrubs, and had extra packs in the freezer to change out at break and before getting into the hot car to drive home for the day. My MD wrote a prescription for a cooling vest so insurance would reimburse the cost (instructions on how to do this are online). I have both ice and phase change inserts for it and I use the vest while working out during most of the year.
My favorite scarf to wear while cleaning the house drapes around the neck for carotid cooling. I still have to take breaks while trying to accomplish simple household tasks that were once no big deal, but far fewer and shorter breaks than normal. Eating a popsicle during said break restores energy even faster! Cooling items can be worn to summer sporting events or for “pre-cooling” on the way to dinner, the grocery, whatever. Music venues, however, are not so welcoming for wearing ice, as security believes you might be smuggling bags of illegal substances. Do not try this! Instead: arrive well hydrated, have a drink, eat the ice, ask for more ice, eat ice the whole time you are there, use the hand fan you brought, and go home before your body begins to feel weird(er).
Summer can be embraced with excitement for people with MS. Cooling measures can allow even the least mobile of us to get outside and soak up the sun. The benefits of sunshine versus vitamin D supplementation are possibly numerous and poorly understood, but why wait for science to figure it out? I am a simple girl; if nature made it and we ran around naked in it for thousands of years, then I believe it might good for us to stop being afraid of it. I do know that with safe levels of sun exposure, there can be a boost in mood, the body can regenerate ubiquinol (ever heard of CoQ10? Hello mitochondria!), and produce immune-modulating effects by generating the hormone, vitamin D. My tips for maximizing these benefits are to drink/eat something green before going outside, waiting about thirty minutes before slathering yourself with sunscreen (depending on where you are, so use common sense), and don’t wash off the vitamin D from your skin as soon as you go indoors.
MS tends to emerge at the worst times in a young person’s life, and new mothers are not exempt. Summer heat can be doubly threatening to someone expecting. As long as I have something frozen on my body, stay hydrated, and remind myself to take breaks, then the dark cloud of despair is kept at bay during summer. My ice vest and cooling gear are even more important to me now that I am pregnant! I workout at a snail’s pace, am easily winded, have frequent temperature fluctuations and painful cramps in strange places. But I still get out there, however sad my little workouts may seem, because I am exercising for two now. Sometimes it takes hours to hit my mileage goal for the day, but I would rather be slow than say “I can’t.” Baby and I will be healthier and happier because of it. I imagine that when August arrives, I will be waddling around the track, wearing my ice vest blissfully unaware of the sweltering misery that I have been warned about when one is due in late summer.