hot and cold.

A little MS birdie is whispering I might have to move to Hawaii.

When I got diagnosed with MS, my fancy new neurologist told me three things.

  1. You have to quit smoking.
  2. Working out (and not smoking) are the only two natural things that have been proven to slow MS progression.
  3. Heat will make you feel like shit.

There was a lot more discussion about phases and types of Multiple Sclerosis, what I “might” expect and little things that can help or harm, but she emphasized that these three were the only facts I could absolutely count on. So with three ticking bombs tucked under my arm I left the hospital ready to conquer my new life with MS. And without cigarettes.

That summer I remember telling friends and family that I must be different. That Palm Springs at 113 degrees feels nice to me. That hot tubs during all seasons are something I take seriously, and in a good way. Long humid walks in North Carolina make me feel sweaty but also quite relaxed in a way. I love lounging by the pool in Mexico in July. I must be different and special and an anomaly!

2 and a half years after diagnosis I found myself exploring one of my favorite cities in the world – Bruges Belgium. By the middle of the first day, every toe and finger froze up on me. I suddenly couldn’t do much of anything and walking was a struggle. It felt like I was slowly turning to stone from the inside, like with Greyscale in GOT. Or Fibrodysplasia Ossificans Progressiva in real life. Look it up, it’s fascinating. Needless to say, it wasn’t summer and it wasn’t hot, it was the extreme opposite. Temperatures in Bruges that weekend were in the low twenties and my body crumbled. Thank God I had a wonderful friend with me who took great care.

When I got back to the States I called my neurologist who quickly explained she forgot to mention that it’s really extremes that make people with MS feel like shit. Not just super hot weather, sometimes super cold. With my jaw resting on the floor all I could say was “good to know.”

So here we are, 3 years and 131 days after diagnosis and part two of fact number three has finally made the debut appearance of a lifetime. It’s muggy and sweltering and unforgiving here in Los Angeles and my stubborn little MS body has finally caved. It has decisively succumbed to being part of the norm. It’s super hot and I feel like super shit.

Thank you MS, for giving me an actual substantial reason for looking at homes and jobs in Hawaii. I couldn’t have done it without you. Or my new AC.

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• Diagnosed with MS in April 2017 • MS Support Group Founder 🌟I view my disease as a gift instead of a burden🌟

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