temperature intolerance – humidity

July 24, 2008 at 7:09 pm

This is my first post because this is a major problem for me. I had an extremely bad case of GBS in 2003 ( they say it was the worst case they had seen – I was in many hospitals including MGH in Boston). I was in the hospital from 6/9/2003 until 11/18/2003. I was totally paralyzed head to foot, even had to have my contacts removed because I could not blink – my eyelids were taped closed at night. I was on a respirator, feeding tube, given the last rights twice when I got pneumonia. The second time I got pneumonia, I was given no chance as I was already so weak. I’m stubborn and knew my husband would not survive without me ( and there were many prayers said for me). My records from MGH, alone, were 286 pages and I still don’t know who my Doctor was. When I finally came home, I was wheelchair bound and told I would never walk again. I now use a cane and fall frequently but I am walking. After all this background, I will finally address the heat issue. My body temperature is 96.8 and I need to take my blood pressure twice a day to make sure it is high enough (or take a pill to make it go up). I do not feel hot or cold objects very much though I’m conscious of these temperatures more than in years past. What I noticed affects me more than outside temperature is humidity. Snow storms, rain or summer heat with humidity are not tolerated by my body (feet and hands especially). Those days mean crawling to the bathroom, no covers touching my body & many pain killers. I live on an island (Martha’s Vineyard) which is probably the area where humidity affects daily life the most. My husband is a native “born on grandma’s kitchen table” so even with the extensive pain I go thru, we’ll live here until he dies or I can somehow con him off the island. My family is very long lived so I hope someday to live in a drier area of the country. I was wondering if GBS/CIDP survivors find the dry southwest more livable or not ? Any suggestions where is the least painful place to call home?