Tuesday, July 3, 2012

On Fire

June was quite the month!  It was the hottest ever in Colorado.  "We" tied the hottest temp ever here, and "we" did it twice.  "We also tied the highest consecutive number of days at or above 100.  There seem too many fires to count in this state right now.  One hit Colorado Springs, a city, and destroyed over 300 homes.  East of here, outside of Colorado, there were storms that knocked out electricity, and that is not a good thing for the middle of the summer.  Right before the heat, we had storms with hail, so in the current 100 degree heat, people are having roofs repaired.

Recently I heard a story on people with asthma and allergies and how much it affects them.  Selfishly I thought, but, but, but, MS............., what to do because it takes less than 2 minutes for heat to bring a person with MS to the ground.  Not everyone - I suppose I'm affected to the extreme.  My body seems to have no internal temperature control mechanism - if only they could invent a thermostat to be inserted into the bodies of people with MS.

I'm grateful.  I have my home.  A friend of mine who has MS was evacuated because of one of the fires.  Her home was fine in the end and she is back, but suddenly being displaced when you have MS can be very difficult.  She drove and stayed with a friend, then in 1 hotel, then another, and couldn't wait to get home.  I imagine everyone feels that need for home, but with mobility and MS, navigating everything is a challenge, and have to continually evaluate everything while moving from place to place, waiting to hear if your home is ok.....  I can't imagine.  MS causes havoc.

I'm grateful for my home although it now needs a new roof and all our flowers were hit by hail.  Miraculously, they are coming back. 

So although I am grateful for what I have, it has been a miserable month.  I get people to help me load equipment into my vehicle (ok, I admit it, I have a "mom van.").  I stay inside as much as I can.  But it's miserable.  Since for the most part I can't go outside, my walking is more limited.  And as people who know me know, I don't really like to be asking for all this help.

Many people ask what happens during heat?  I have now determined that for me, it depends.  A study recently showed that when people with MS are compared to people without MS and exposed to heat for a very short time, the results are clear.  The core body temperature for people with MS goes up much more than for people without.  This may be because many with MS don't sweat.  I never sweat - this is actually a problem.  Because of this, in the study, the people with MS couldn't walk and they had a hard time standing.  The results were dramatic.  For me, it's much the same.  By the time I get to my car if it's hot, I'm wondering how I'm going to get into the car.

The other thing that can happen is hands and feet get tingly, or go numb.  I was in a meeting and suddenly realized I couldn't feel my pinky fingers and this was quickly moving to my ring finger area.  When I got up - well read the previous paragraph.  It was hard to get up.  It was hard to walk.  And from not walking as much, the "reward" is legs that ache, that ask to walk, even when they can't.

The only good part is it doesn't last long.  In an hour, function somewhat returns.  In 24 hours, generally people are fine.  I'm going to bed feeling like spaghetti legs, and waking up fine.  I like waking up fine.  But the every day cycle is old.

We have 2 more months in summer.  I'm hoping for an early fall.  So are all the people impacted by fires, the people with asthma, the people with allergies, .............., and the smaller group of people with MS.

We (people with MS) will emerge from hiding, being able to feel fingers and toes, not having to worry about heat causing legs to fail, and ready to get on with life.  It's always one day, one hour, one minute at a time with MS.  But when the heat breaks, it's all more tolerable.

And since we are inside following the news, we (I assume) realize how much the firefighters, police, etc are doing, and we are thankful to them.


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