Rejoicing the Arrival of Autumn as Someone With MS

As August ends and September begins, I can’t help but feel somewhat victorious.  I survived – or to be more specific, my MS survived another grueling summer.

When I was younger, living on the East Coast, I had bittersweet relationships with the other three seasons.

Autumn always brought changing colors and the start of football season, but it also signaled the start of school, studying, tests – and lots of raking!

Winter had excitement from snow, sledding, my birthday and Christmas, but it also had really, really, really cold weather.

 

Spring ushered in warmer temperatures, wearing shorts, flowers blooming… but unfortunately, it was always accompanied by days and days of rain.

Summer… well, when I was in my teens, there was really no downside to summer. School was out, we played outside until it was dark, swam in the pool, went to the amusement parks and had fireworks on July 4th – I never wanted it to end!

But for me now, summer has become my own prison and MS is the cruel, heartless warden.

For many with MS, heat or humidity brings about a worsening of symptoms. In some cases, it contributes to new relapses.

During the summer months, I often struggle to find energy to get up off the couch, let alone take part in family adventures.

I take medicine (daily) to help with my energy levels, but it’s not enough.

Without the meds, I can barely keep my eyes open. With them, my eyes squint wearily as my body begs for rest, on a bed, couch, floor, whatever – the location doesn’t matter, as I crave peace, quiet, comfort… and relief.

When I force myself to head outside, my body recoils the moment I encounter the hot, summer air.

I manage any excursions by finding shade, wearing ice packs around my neck to cool my body, bringing cold bottled water wherever I go and not pushing myself physically once the temperature exceeds 85 degrees.

Walks with the family, running errands and other activities are planned for early in the morning or late at night, before sunrise and after sunset.

Exposure to the direct sun usually makes me dizzy and sometimes I have to literally lean on my wife to get from point A to point B.

My vision becomes blurry and will remain so until my body finds rest and cools down.

During the summer months, my risk of a relapse is high. The past few summers I’ve been lucky, but not so this year. For many weeks, I was
unable to use my left hand for basic functions like tying my shoes, buttoning my shirt or cutting my food.

Did factors other than the heat cause this exacerbation? Possibly. But the raised temperatures certainly didn’t help.

Mentally and emotionally, I struggle. My body screams “rest” but my heart pleads to savor the long summer days with my family.

My children want to play, go to the pool – be carefree kids, and I don’t want them to remember their summers as worrying about their daddy’s health or feeling like they were punished by my limitations.

My wife loves to eat outside, entertain friends and family or take our children on new excursions and I often fear that my body will fail her.

I do feel guilt, but mostly it’s just frustration.  I wonder why, why does MS attack the things that matter so dearly to me?

MS is a punishing warden that never takes a day off, bringing with it symptoms and relapses, no matter the season.

But as autumn approaches, there is an extra pep in my step and glimmer in my eye. On the first day of cooler weather, I have a tradition, much like Andy Dufresne after escaping prison in “The Shawshank Redemption” – I stand tall, with my hands held high towards the Heavens, and rejoice.

In that moment of triumph, I feel like I’m 16 years old again… and nothing can stop me.

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Thinkstock photo via Everste.