Friday, June 6, 2008

Summertime, But the Living’s Not Easy

Summer is definitely here with its long, sunny days. There was a time when you would find me worshiping the sun and basting with suntan oil, but no more. Having MS makes me very sensitive to the sun and especially the heat. When I overheat, I'm a mess. I turn beet red, I become floppy and very tired. Basically, the heat makes all my symptoms worse. Some experts even call it "a pseudo-exacerbation." All I know is that it is something I try to avoid.

One symptom in particular that the heat definitely affects is fatigue. It is very difficult to explain what MS fatigue is like. For myself, I got a preview of it when I had mono back in high school. I remember simple tasks like taking a shower being absolutely exhausting. With MS fatigue, I can have a good night's sleep, wake up and have breakfast, then all I want to do is go back to bed and take a nap. Even the Federal government acknowledges this fatigue and accepts it as a justification on disability applications. There are medications like Ritalin that can be taken to combat the symptom, but most people don't like how jittery it makes them feel and how hard they crash afterwards.

Fatigue can be a very isolating symptom. It's hard to explain to other people and it limits your participation in everyday life. You're always concerned when you have a scheduled event that you may not have the energy for it. There are strategies that you can use to conserve energy and make sure that you're awake for the meeting, party, dinner etc., but they don't always work. Sometimes, the only thing that will make you feel better is to lie down but that makes you feel guilty like you are letting everybody down including yourself. It can also make you feel angry, but anger and guilt don't change what is. You have MS and it makes you tired; that's the reality.

So, my reality for this summer and subsequent ones is to stay indoors in the air conditioning. I will go out when I have to and I won't beat myself up when I need to take a nap. After all, making accommodations is what my life with MS is all about.

To read more about MS fatigue, go to

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