"Heat-Intolerant"

It has been very hot lately as you in the United States know.  July and August are Wisconsin's hottest months, so we make a lot of summer plans during those months.  The southern states take it for granted that they can plan a lot of outdoor things most of the year, but here in the northern U.S. we never really know if we will get snow, sleet, wind, rain, hail, or a nice day.  June weddings have been known to get ruined with frost on the fresh flowers, and by Halloween we could easily have our first snow or more. 

But, the heat is very hard on people with Fibromyalgia and other illnesses.  Wisconsin humidity makes up for our loss of yearly warmth by making it feel much hotter than the temperature.  So when it hits 80 or higher, we start becoming very uncomfortable.  Right now as I write this, a quick check on the new weather program on my computer tells me it is 90 degrees, but FEELS like 98 degrees.  (The same thing happens in the winter, only opposite so if it is minus 10, it might feel like minus 20!  Since this blog is about educating you about the personal side of Fibromyalgia, let me explain what I mean by the heat being hard on us.

First of all, I have never sweat my entire life until I hit menopause.  (Now I do have night sweats, but still do not sweat during the day.)  Instead of sweating, my face gets very red, and my body feels like it is going to explode.  If I don't get relief, I have been known to pass out.  I get migraines from the bright sunshine, because even my eyes are more sensitive than normal.  It's like there is a heat limit that when reached, the body literally breaks down.  I get severe diarrhea and feel very sick to my stomach.  My legs get weak and I can barely stand.  My hands and feet swell up so I feel a claustrophobic sense with clothes or jewelry or shoes.  I get dizzy too and feel an urgent sense of panic to get out of the heat immediately.

I haven't mentioned the allergies because that is a different situation, but they also kick up worse if I'm outside.  So instead of putting myself through those symptoms I stay inside most of the summer.  I have learned to limit the outdoor activities to what I think I can handle, and according to priority.  Fibromyalgia people are known to have lower Vitamin D levels, and in my case it is certainly true because I simply don't go outside while the sun is shining.  (Being lactose-intolerant doesn't help either.)  I will only think about doing things after the sun goes down, or if it is in good shade or in air conditioning. 

When I do go to something important that requires some outside time, even if I don't overdo it that day, I still feel it the next day.  I might get sick to my stomach that night and spend much of the night with diarrhea, and in great pain.  The next day I'm exhausted and my body feels like it might shatter if someone touches me.  I ache all over even if I did nothing but sit.  I have to rest and feel like I am recovering from an auto accident or something. 

I like winter better.  Sure the cold gets in my joints, but at least I can bundle up and go outside.  I seem to have more energy in the winter too, as long as depression doesn't join in with the dark days.  I love to watch the snow fall, and to crawl under a warm blanket. 

Summer to me is more like a passing dream.  I see the beauty of the green grass and the bright colors of the flowers against a beautiful blue sky, but I am not a participant for the most part.  Other people with Fibromyalgia may have a different experience, but this is mine.  When I say the heat is hard on me, I am not exaggerating or making it up.  I am not being lazy either.  I am struggling to do the best I can, and after over 50  years in this body, I have learned to be careful in summer.

My daughter loves to tan, and get outside and walk, or bike, or whatever.  My husband gets out there and sweats in the garden and mowes the lawn.  In fact, he seems to come alive in Spring, while I get better in the Fall.  Meanwhile, time passes for me as I wait the summer days out.  When nightfall comes, I come out of hiding.  It's not easy going against the daily schedule of everybody I know, but it's the way it is. 

My plea is to have consideration for those who say they are not heat tolerant.  We are not like you.  God has a different plan for us and it does not involve labor or fun under the hot sun.  We may have differences, but that's OK.  Just because I stay inside doesn't mean I am anti-social.  I love it when people come visit me on my turf.  But as I always say, please don't show up before noon! 

"Let us dare to be ourselves, for we can do that better than anyone else can." --Shirley Briggs

"The Perfect Day"

I hope you all had a great Independence Day.  I'm proud to live in America where such things are celebrated! 

My husband and I went to visit our son in La Crosse, Wisconsin and took in a baseball game where he works for the team, and also got in on the Riverfest which was on the banks of the Mississippi River.  The temperature was in the low 80's, and it was a perfect day.  It seemed all around me people were having fun for the day.  Families, and singles and couples were enjoying the festivities and games and it seemed for a day that we all forgot about our problems.

My husband walked slowly with me and opened car doors and retrieved drinks when I needed to sit.  My son had tickets waiting for us for the best seats in the stadium, and his beautiful, pleasant girlfriend sat beside us with a golden halo of being in love encircling her.  To make the day even more perfect, the team we came to watch won and the crowd was delirious. 

I have to admit that I've learned some good lessons from having Fibromyalgia.  I've learned to enjoy the smallest of pleasantries, and the simple acts of kindness from people who really care.  I've learned that when God gives me a perfect day, I need to take advantage of it because the weather affects me in extreme heat and cold.  When I can walk slow instead of being rushed, I can see the little things and take beautiful pictures so that I can retain these memories on the not-so-perfect days.  I've learned to be grateful that I am able to sit through an entire baseball game because my compassionate son thought ahead to get seats with backs on rather than regular bleachers. 

I watched a little girl on a giant bouncy thing that looked like a combination swing and catapult.  She simply gave up any fear and made herself go as high as she possibly could.  I took pictures as she went higher than the treetops, her long hair loosely going wherever, and her body adjusting to the swing.  I knew I was physically too far for this experience, but I pretended just for a moment it was me, unafraid, not stiffly protective, trusting in things I never would as an adult.  Though this little girl will never know what she did for me, I thank God for the flight of this little angel.

Then I saw two older girls-maybe sisters, maybe cousins, or best friends-ignoring the unspoken rules of proper adults, and jumped into the large water fountain.  They started out holding their pant legs up, and then just laughed and gave up as if they had found their own private swimming pool.  As the water exploded up like a volcano, they positioned themselves under the liquid lava so it was like a natural shower, washing their hair and bodies with delightful, gentle force.  Again, I thought of myself, maybe with my own sisters, forgetting that in our family we would never do such a thing, but just for the moment, maybe we wouldn't have to be so perfect. 

It's true, you can't go back to your childhood and do things differently, but we probably wouldn't realize it when we were kids anyway.  We had a different kind of fun when I was a kid, a little more isolated, but we found it where we could.  I do believe everything has it's reasons, and that God has a perfect purpose for each of us, no matter how we are raised or what our life is like today. 

Today, I go back to my life, back to the reality of normal stuff, but I will smile every time I think of that perfect day.  Was it just a dream?  No, I have pictures!  Thank you God for angels we encounter, and the silent love that surrounds us.

'The greatness of a man's power is in the measure of his surrender.'   William Booth, founder of the Salvation Army,