ELLIE'S BLOG on Living Well with MS

At least for those of us with multiple sclerosis.  You feel sluggish, don't move as fast and tire easily when it's really hot and humid. That's one of the downsides of having MS which gives you a damaged Central Nervous System. Heat causes slowing of the conduction of the nerve impulses bringing your functioning level down to a crawl or a full stop. In fact before we had Spinal Taps and MRI's etc. Doctors would put their patients into a hot bath or container to see if it produced the slowing ,spasticity etc. to find a diagnosis.

  I was reminded of this when I left church last Sunday morning.  We  were starting a heat spell here in upstate New York.  I realize that it's nothing like what they have in the mid country, south and west but it for us it's an eye opener.

  The  night before I  used my wheelchair in the house as the fatigue from the heat was getting to me. But when I went to Church the next morning I used my wheeled walker as I knew my husband could  drop me off in front of the church. My latest drug AMPYRA helps me to walk a longer distance so I am using my wheeled walker with a cane for going to Church as well as some other places.

However, as I left the church the blast of hot air hit me. There was no lemonade,cookies or chatting for me. There was also no walking.  As my husband had parked not that far away I sat on my walker and pushed myself slowly backward resting in the few shady areas as my husband guided me.  This was not a new situation but it seems that heat wipes out Amprya's help.

Many people were surprised that all of a sudden I couldn't walk. That's because they don't understand how and why heat and high humidity  affects people with MS so much. There is a big difference in temperature (10-30 degrees) between being in a shady area on a sunny day, a concrete sidewalk, on the street or worst of all a parking lot in the mall.  

I love being outdoors. If you've read my prior blogs  you know how much I love to be out in my garden. I use ice packs, have little shady nooks and get up and out early to garden.

 

Down to the Rose Vine Here I am training a rose vine to climb up my apple tree

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I also have a special shady

retreat where I read by

resting on my lounge

in between gardening.

  My son's have put in a small waterfall and pond which is just so restful. I have many plants that I've used in that area but am finding new ones that love being near water. 

 

And then when it's really hot I go back into my air-conditioned  home and work on my computer or do projects in the house.

Now this is what I do at 76 and of course retired. When I was young and working and raising a family I gradually gave up my own special interests as I was too tired after my obligations. Gardening was one that eventually went. If I did it before work- work would suffer, if after in the heat ..well there was no garden really except for what my husband did. It was the same with other activities I loved too. I was a good tennis player and we used to play in the summer after work but I found that my legs just stuck to the court.  I would pour ice water over myself and ice my neck,wrists etc. but my timing was off and I played terribly. So eventually I had to give it up and just play tennis in the summer on a cool Saturday morning. I went swimming after work while my husband played tennis. I did the same thing for biking when I just couldn't go the distance up the hill when it was warm. For a while the mountain bike I bought to replace my regular 12 speed helped but even in the spring or fall when it was cooler that went too. It was the same way with hiking. Hiking had to be done very early in the morning and when it was cool . My last hike should have been easy (Sleeping Beauty-around Lake George) it was a killer.

And of course living in Saratoga Springs which is a resort town there are a lot of activities in the summer. I have been increasingly missing out on these days to my increasing intolerance to heat and humidity.  But I do try to adapt and go where activities are inside and air conditioned or outside when it's good.

Adapting has been something I've been doing for years. When I was working as a Physical Therapist I remember getting stuck having to walk uphill to get to a patient's house on a day that turned warmer than I expected. That's when I started planning Home Care visits at times of the day when the sun was not over entrances to homes. Especially if it meant walking over non shaded concrete or asphalt.  And of course I became extra careful where I parked my car and used cardboard inserts on it's windows.

My husband loved his Mustang Convertible and we used it all the time to go places with "the top down".  It took a while for my husband to adjust to my need for the top up and air-conditioning when we were stuck in city traffic on a hot day. I would be falling out of the car not even able to stand up never mind speak when we stopped for something. But after a while he did adapt. And it certainly wasn't the end of the world. And now we use a minivan so we can put my electric wheelchair in the back and we can still can go places. That also was not the end of the world.

There are so many things I would still love to do. But I have to content myself with only  some of them depending on my MS and the weather. I can no longer play tennis, bike, hike, go dancing, walk downtown etc. even in good weather.

But with our normal summer weather if I get up early I can still garden. My son's have helped me so much to adapt our yard so I can garden. I can't thank them enough.

 However this summer has stressed a lot of my plans to adapt. I don't know how  people with MS who live in the South and Midwest cope with very high heat and humidity. Are they able to do things outside! Or is summer mostly spent inside in air-conditioning?

I have found that the strategies that I've developed for coping with hot days in the summer are no longer sufficient. The increasing amount of the days with very high temperatures and high humidity are totally whipping me. This week I spent three days partly in bed and I never left the house. I have found that often by the end of the day I can't walk and I am just whipped and back in my wheelchair.

I tend to be a doer not a viewer so this is hard for me. But when you have that awful heat and humidity it really reinforces that I should be more of a viewer and less of a doer.

So the number one change I've decided to make is to use my electric wheelchair even when I can walk some when I go outside in the morning using my ice packs and all the other things. That way I'll save my energy for my gardening and other activities too . The 2nd change will also be hard for me. But I will ask more often for help when I'm over extending myself. And thirdly I will not give up my gardening -I'll just find new ways of adapting.

My oldest son is helping me to be more of a viewer by reviewing with me how  to use our newest camera.  I am going to take it out with me in the morning and catch all the growth and beauty of our garden and the birds and butterfly that visit.

So expect to see more pictures of my garden on my blog to lift my spirits and hopefully yours too.

ellie