Wednesday, September 5, 2012

The End of Summer

That’s what they call Labor Day Weekend – the unofficial end of the summer season. And what a summer it was for Kim and me. We had long stretches of bright sunny days. Enough rain fell to keep the lawns green, but it seemed like the precipitation occurred only on weekday nights.

We enjoyed several cookouts and a few baseball games. We attended outdoor concerts and art shows. We sipped drinks and listened to great live music at our favorite venues in the Old Port. We relaxed together and entertained on our new deck. We had a memorable trip to Cleveland. We served as tour guides for many of our out-of-town friends, showing off our great city. It was a magical three months.

Yet, I’m so happy that it is finally over.

Why would I say such a thing? Is it the tourists that I hate? No, I don’t mind the tourists. Although they can become annoying, they make for great people watching, one of my favorite pastimes. Is it the few extra pounds I put on from all the socializing? Yea, that’s a problem, but I’ve got nine months to shed those. The reason that summer absolutely kicks my ass is the heat. It’s an MS thing.

We live within a few miles of some of the best beaches in New England, and I own a wheelchair that actually maneuvers well on sand, yet we didn’t go to the beach even once this summer. I can’t stand to be in the hot sun for more than a few minutes. On those rare days when we had low humidity and temperatures in the 70s, I was comfortable in the shade. However, when temperatures got into the 80s or 90s my options became limited, and I felt like crap.

The heat sensitivity that people with MS experience is temporary, and nerve conduction returns to normal (such as it is) once core body temperature cools back down. But while our core temperature is high, we experience new or worsened symptoms of MS. For me, it means that my already weak muscles just feel weaker, and that’s not good.

We do what we can to beat the heat. Kim and I manipulate the windows, shades, and fans using a combination of science, experience, and old wives’ tales. On the very hottest days, I park myself in the bedroom beside our only air conditioner. I wear loose fitting, light clothing all summer. I haven’t yet taken advantage of any of the personal cooling aids that are available, but I may try some next year.

In the winter we maintain our house temperature between 70 and 72 degrees. That keeps me squarely in my comfort zone. During June, July, and August of this year our indoor temperature was often over 75 degrees, and many times it was in the 80s.

In addition to the discomfort I experienced from this heat, the other way that it interfered with my life was that made it very difficult to evaluate the effectiveness of my latest experimental MS treatment- intrathecal methotrexate. It certainly doesn’t seem like this drug is helping me at all, but I don’t feel I’m giving it a fair shake until I see how I manage during cooler weather. I don’t want any intrathecal methotrexate benefits to be veiled by my heat intolerance. I just had my fourth infusion in late August, and I plan to have my fifth infusion in late October. If I still don’t see any benefits, only then it would be fair to conclude that the treatment isn’t working.

As if on cue, in the past few days the weather has changed for the better. The fall-like air is at once soothing and invigorating. It works on my weary body like a gentle, probing masseuse. Throughout the day I can now find the energy to accomplish tasks I feared lost to MS forever, when, in fact it had only been a temporary setback due to the heat. It’s as if my MS progression has gone back in time three months.

We live in one of the cooler summer climates in the country, here on the coast of Maine. I can’t imagine how much more difficult it must be for people with MS who live in hotter regions. I hope you all have central air-conditioning, but I fear you don’t.

I’m looking forward to a delightful couple of months before the cold weather hits. But even then, while I’m inside (which is the majority of the time) I’ll remain at a comfortable ambient temperature for most of the winter.

By next spring I will again look forward to summer, because there will be so many wonderful experiences in store for me. But I know that this summer fun will come at a price, and by Labor Day Weekend I will have had enough.


  1. Wow, I didn't know that about MS effects of heat. That is awful. Sounds like the next home project will be another window unit AC or two. Then you can take a 4:30 a.m. paper route to pay the electric bill......Ginny

  2. Numbness. Heat intolerance. Bladder and bowel issues. Visual problems spasm pain spasticity What a fruitful disease. A true test. No not a test rather a torture. Ive gotten to where i cant stand even the sight of the sun. Its like kryptonite. Bring on the cool air so i can feel my hands.. I hear ya. Loud and clear

  3. Ginny,

    Yes, there is no end to the little gifts that MS leaves us!

    The Greek,

    That's quite a list. Of course, central air-conditioning would take care of much of the problem, but that's a lot of money to spend for a relatively short summer season.

  4. I have a safari-ish style cooling hat that doesn't look too ridiculous and does a great job. It's amazing how much benefit you get from just cooling your head. I still can't sit in the sun, but I can tolerate much higher temperatures in the shade with it.