Friday, May 18, 2012

Just Rambling……….

Several girlfriends and I try to get together on our birthdays.  We go out to eat, or have a “tea” party.  It is so much fun to just be crazy and cut up for a few hours.  These ladies mean so much to me and we really cheer each other up.

We had one of these meetings yesterday and it was so much fun.  We ate at a Tea Room and presented her with birthday presents.  Although it is not as relaxed out in a public area, it was still fun.

One of the ladies has a beautiful willow tree in her backyard.  Next month is her birthday and we will probably have a luncheon under that tree.  It is almost magical to do this and makes for a really special time together.

The only problem with this is that it is in June and the weather will probably be even hotter than it is now.  As all of you with MS know, heat is not our friend.

I lived on the Gulf of Mexico for almost 20 years.  I had a year-round tan, played beach volleyball several times a week and was fit and trim.  This is no longer me.  (By the way, if you have never played volleyball in ankle deep sand, you don’t know what you are missing!)

When my MS started really kicking in, I would notice that I could not stay out in the heat very long, play the sports I was so addicted to playing, or join in the other activities I had once enjoyed.  I became very limited in my outside activities and had to find things to do in the shade or inside.  Although being in such a beautiful area still had a lot of benefits, the things I had enjoyed for so long were quickly having     to be replaced by others.  It was a sad time in my life.

I don’t think most people really realize how little warmth it takes to begin to affect us. Uhthoff’s Phenomenon is the worsening of neurologic symptoms in MS when the body gets overheated from hot weather, exercise, fever or saunas and hot tubs.  These temporary changes can result from a very slight rise in core body temperature, even as little as one-quarter to one-half of a degree, because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.  For many years, the “Hot Bath” test was used to diagnose MS.  A person suspected of having MS was immersed in a hot tub of water and the appearance of neurological symptoms or worsening of symptoms was taken as evidence that the person had MS.  Obvious causes of increased body temperature are things such as being in a warm environment, increasing physical activity, or wearing too many clothes. A not so obvious cause of increased body heat is having a fever.  Other causes that are not too obvious would be things such as wearing clothing that keeps you too warm, or being in rooms that, although they are comfortable for others, are too warm for you.  (This was taken from a post on Facebook)

There have been several sites that offer free cooling vests and such to try and help us enjoy outside summer activities.  I have some of these things and they really do help a little.  But not enough to really be able to be outside in the middle of the summer heat for very long.

It is a sad point to many with MS, especially those who are young, that they cannot be out in the sunshine, get tans, engage in sports and such in the summertime.  My heart breaks for those people.  I had my “days in the sun” and they are some really wonderful memories.  Some with MS will never have these kinds of memories.

So, where is this blog going?  I’m just rambling along, thinking of yesterdays and dreaming of the future……….don’t really have anything profound to say……..just remembering each of you in my prayers and holding you up to God… is still good even with the limitations it sometimes throws at us!!


Muffie said...

I'm actually more affected by cold than heat. Very extreme heat (upper 90s) with humidity is bothersome, but I think that would be true even without MS. Prior to dx, my neurologist kept asking me about heat intolerance, and it's the one symptom that kept him from an earlier dx. The only time the heat totally did me in was the day of my daughter's wedding (upper 90s) during outdoor photos. I was a mess! Lots of good info in your post!

Janie said...

Thanks Muffie! I noticed an error in my posting.......I really should proofread it better! I haved noticed that both hot and cold affect me more. I get really hot quicker and chilled quicker. Oh well......just have to learn to deal with it I guess! Take care!