The MS Goldilocks Zone

The Earth resides in a Goldilocks zone – the temperature is just right. If our orbit was any further from the sun then all water on the planet would be in the form of ice, and life probably couldn’t exist. If our orbit was any closer to the sun then any water would be in vapor form, and life probably couldn’t exist.

Most people with MS expend considerable effort to seek out and occupy their own, personal Goldilocks zone. If the ambient temperature is too low in our homes or on our streets, certain problems like spasticity crop up. If the temperature is too high, all sorts of bodily functions can go on the fritz. I’ll explain how this plays out for me.

Before MS I welcomed the dramatic change of seasons that we experience in Maine. I had passionate outdoor interests geared for every month of the year, such as snowmobiling in the winter and golfing in the summer. You can read about my snowmobiling here and golfing here.  Obviously, for reasons that have nothing to do with temperature, I can’t enjoy these outdoor activities anymore. Not only that, but it’s difficult for me to even go outside at all in the winter. When my body temperature drops, my spasticity increases. The net effect is that instead of my feet staying nicely in the foot pedals of my wheelchair, my legs stick out semi-straight. I do go out in the winter, but only on the warmer days or when I am getting in the van to go to another climate controlled venue.

But the bigger issue for me, and for most people with MS, is my heat sensitivity. When we should be celebrating the arrival of spring, with its warm breezes, blossoming flowers, and green grass, we are instead fearful of temperatures rising above the mid-70s. We reluctantly huddle in our houses with the shades pulled or the air-conditioning cranked. I wrote about last summer’s distress here.

Each person’s reaction to high ambient temperatures is different. For me, I suffer from a general sluggishness. I get weak and tired and probably a little grumpy. I can endure the heat for short periods of time, but if I overdo things I am fairly useless for several hours.

(Photo credit: Wikipedia)

In the United States there are a wide variety of climates. Shouldn’t people with MS consider seeking out and then moving to that ideal climate – one where it never gets too hot in the summer or too cold in the winter? Theoretically, yes. However, the only place I’m aware of with comfortable temperatures year-round is the coast of California, but who can afford to move there? I live in coastal Maine, and I couldn’t imagine relocating anywhere south of here on the East Coast. I can barely deal with the summer temperatures that we have.

For years I suffered throughout the summer. The only air conditioner we had was a window unit in our bedroom. On the hottest, most humid days, I would retreat there with my computer and my television. This year, I could bear the indignity no longer. We parted with more money than we can afford in order to purchase a ductless central air-conditioning system. Our house is configured such that one of these units can do the job for both my living area and my bedroom. Each day this summer I have looked at the outside temperature and the inside temperature, and decided if it is an air-conditioning day. I don’t hesitate for a second to pull the trigger on my A/C’s remote control.

I asked for and received a letter from my doctor indicating that the purchase of this air conditioner was a medical necessity. That means the cost of the unit will qualify as a tax-deductible medical expense. Don’t get too excited, though. The rules for deducting medical expenses don’t always result in actual tax savings. A complete explanation of this tax code cluster-fuck will have to be the subject of a future blog post.

I resent the fact that I am as confined to the inside of my home during these mid-summer days as I am during the harsh winter months, but at least this year I’ll remain comfortable and relatively energetic for the duration of my house arrest.

I have created my own, personal Goldilocks zone.

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Here are some links to peruse for more information about MS and heat sensitivity:

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/heattemperature-sensitivity/index.aspx
http://ms.about.com/od/signssymptoms/a/heat_intoleranc.htm
http://mssociety.ca/en/information/symptoms_mng_uhthoff.htm