This summer has been particularly challenging for me with each new discomfort kicking off another round of my favorite game show “Is this MS? Is this middle age? Is this menopause?” Followed by the unwin-able bonus round “Is this forever???”
As you likely know, I am quite comfortable with the traditional F-word and its variations. Forever scares the fuck out of me, though, when I consider my dwindling independence. For weeks now I’ve needed Neal to help hoist me to a seated position when it’s time to leave my lovely, soft, safe bed. Then he must hoist me to a standing position. On the worst days this is followed by an escort to the toilet not quite 10 feet away from the bed, complete with another poist-pee hoist to stand and bonus under/pants hoisting. (Sexy!) After too many falls en route to the kitchen, I have learned to submit to a wheelchair ride to breakfast as well.
When it’s time to get dressed, sometimes I go into toddler mode, with Neal pulling my arms through my shirt—or, even worse, pulling the whole thing over my head complete with a singsong “Where’s Becca?!” To his credit, he almost always resists this urge. When I feel confident, I attempt the shirt bit myself, either succeeding or getting stuck partway through, which inspires me to shout “I am the great Cornolio!” (Because I am a slave to 90s pop culture.) That’s Neal’s cue to release me.
Instead of death by “Neal could you please”, which has become so common I hardly notice it, life is now death by “sorry” and “thank you”, both of which come out of my mouth so automatically it’s often nonsensical.
We’ve found some things that help me function. Keeping the thermostat at a nippy 68 degrees Fahrenheit and having a steady supply of ice water (a necessity for *any* southerner, really) keeps my body in better running order. Why? Well, MS causes the immune system to chow down on the myelin sheath, which insulates the nerves in the central nervous system, causing impulses to go through less smoothly. No bueno. Add heat to the equation, and the impulse conduction gets worse. Even less bueno. So doing things to cool off definitely improves matters.
(Here’s a video from one of my favorite MS rockstars, Dr. Aaron Boster, describing all of the above more eloquently.)
Another thing that has encouraged some of what I’ll call my independ-ish is the new baby in our condo building. No, the one-month-old does not have super strength, but her parents specifically saying, “Please let us know if you need anything,” during a recent visit means that as long as I can army crawl from wherever I am in the condo to unlock the door I do not have to spend the whole day on the floor. And the new parent neighbors reminded me that our other neighbors are former professional cheerleaders. You know who is very good at lifting ladies? FORMER CHEERLEADERS! GOOOOO CONDO!
P.S. Y’all, my neighbors are the kindest. They lift me up *and* refill my water. What more could a girl ask for?
P.P.S. You know, except for a fully functioning body.
REMINDER: I’m now on Substack and tend to post there first and more frequently. It’s free and easy to join. And if you’d rather stay here, that’s okay, too. xo
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you always make me think about how much I dont think.. love aunt M
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