Summer and My Sarcoidosis Are Not a Good Combination

Summer is coming

Summer and my sarcoidosis don’t mix well. So when Philadelphia’s temperature soared past 80 degrees May 2, I became an amateur meteorologist. If you wanted to know the weather forecast for the next hour, day, week, or 10 days out, I was your person. The House Stark in “Game of Thrones” has its motto: “Winter Is Coming” — and I have mine: “Summer Is Coming.” Like the Night’s Watch guarding the wall to the seven realms, I became a round-the-clock sentry on the lookout for the return of the sticky, hot days that I dread.

Long before sarcoidosis entered my life, I was no fan of summer. I’m that person whether it’s summer, fall, or winter who asks, “Is it hot, or is it me?” It’s almost always me. Summer heat and humidity bring out the worst of my autonomic neuropathy symptoms, which is why SPF has come to mean sweat, pain, and fainting to me.

My summer dreams

When Philadelphia shot from a peak of 59 degrees May 1 to a ridiculously hot (in my opinion) high of 84 degrees May 2, the summer-loving folks’ dreams of beaches, barbecues, hiking, and everything outdoors began. So, too, did my fantasy of having a personal heat relief team like the celebrities do. Diddy had his assistant Fonzworth Bentley to hold an umbrella to keep those pesky sun rays off him. I thought of water boys at the ready to give me cool liquids when I break a sweat or a personal attendant to spritz me with a cool mist and fan me when I’m away from air conditioning. 

Hotter than average

If last month is an indicator, the East Coast is already on track for a hotter-than-average summer forecast. Philadelphia had 13 days of 80-degree or higher temperatures in May. We weren’t the only ones feeling the heat. Horse-drawn carriage tours were suspended because of the heat in Charleston, South Carolina, which was among the areas in the South with record highs in May.

Too hot to handle

I’ve never been able to handle the heat. When I get hot, sweat covers me as if I’ve taken a dip in a pool and if I don’t get relief quickly, I pass out — in church, in mosh pits, in parking lots. I’ve left a trail of embarrassing memories behind me over the years. The one-two punch of heat and humidity knocks out my energy and leaves my body feeling beaten and bruised with all-over aches. Despite my history of heat intolerance, I didn’t begin to get answers until 2016 after a diagnosis of postural orthostatic tachycardia syndrome — symptoms include temperature deregulation. I had received an earlier diagnosis of small fiber neuropathy in 2011.

Counting the days until fall

While most people hibernate during the winter months, you’ll find me holed up at home over the summer with the shades drawn and air conditioning on full blast. Summer for me is extra sweat, showers, and laundry. Anyone sufficiently daring to invite me anywhere can expect to be thoroughly interrogated before I reach a decision. Is it inside? Will there be air conditioning? How far do we have to walk? I will arrive with a change of clothes, assorted toiletries, and bottled water. So to all of those who love summer, I say, “Good for you,” and, “Enjoy it.” You won’t have to worry about me getting in your way. I’ll be inside where there is air conditioning, waiting out the heat until those lovely, crisp, cool days of fall return. 

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.