Jack Kost

Wednesday, May 31, 2017

Summer…Here I Come:

Posted on May 26, 2017 by MSAA.

By Penelope Conway

Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.

The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.

Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.

Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.

If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.

Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.

I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.

My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.

Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.

Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!

Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.