Life with MS in Florida – Baby it’s HOT Outside!

By: Jeri Burtchell 

Living with the challenges of MS is one thing, but if you also live in the south, surviving summertime is no small feat. Everyone’s symptoms are different, but here’s a universal MS fact: whatever the symptoms, heat will make them worse.

Having lived in northeast Florida since my 32 year-old was in diapers, I consider myself a southerner, even though technically I was born in New York.

I qualify as a southerner because:

  • I don’t own a pair of boots, but I have more flip-flops than Skittles has flavors.
  • I wait until the weatherman says a hurricane is at least a category four, and three blocks away before I get supplies.
  • My perfume in the summertime is mosquito repellant.
  • The only candles I buy contain citronella.
  • I take beach photos from the passenger seat of a moving car as we’re doing a drive-by – to prove I really do live in the Sunshine State.

I head indoors before the summer solstice in June, set my air conditioner to “frostbite.” I don’t emerge in the light of day again until school starts in the fall. It’s the only way I know to endure it.

When I was in my 20’s, my favorite hobby was hiking in the Ocala National Forest armed with binoculars and a bird book. I don’t recall the heat ever bothering me.That was before MS and old age turned summertime into my mortal enemy. Now I admire the outdoors on the Nature Channel or ESPN, no longer eager to be personally immersed in it.

But sometimes you just have to brave the elements. Like when your granddaughter joins a local swim team and you go to cheer her on. Turns out you can’t do that via Skype, at least not when you’re the one who’s going to be driving her to and fro.

Her first meet was an hour’s drive out of town. We had to arrive at 7 a.m., and we figured it would last a couple of hours and we’d be out of there in no time–before the coolness of the morning was replaced by scorching heat.

Boy, was I wrong! I have lived here long enough – I should have known better. On top of that, I even wrote an article about how heat affects those with MS. It’s not like I didn’t know.

But what we thought would take only a couple of hours turned into an all day event. By the time she was done and we were headed home, I was dizzy and limp as a noodle. We had to sit in the car with the AC running full blast for quite a while before I could even drive. While we sat and waited for my brain and spinal cord to cool off, we chatted about how much fun she had.

jeri blog

It was at that instant I knew that any heat-related suffering I’d been through that day was worth having shared the experience with her. As I began to cool off, and my legs changed from overcooked pasta to more of an al dente, I realized I was going to have to come up with a plan.

MS might stop me from my bird-watching nature hikes, but when it tries to come between me and cheering my granddaughter on, I’m putting my numb and tingly foot down.

So I made a list of what might make the experience more bearable for me next time:

  • I’m wearing shorts or a dress. Period. No matter how unflattering my legs might be, jeans are not an option.
  • I’m wearing light, thin clothing and only flip-flops on my feet.
  • I’m bringing a folding chair — despite all the chairs at the facility, there was never one available when I needed to sit down NOW.
  • I’m getting a big floppy straw hat.
  • I’m bringing a personal cooler with a rag down in the ice water that I can wipe my brow or pulse points with occasionally.
  • I’m bringing lots of bottled water.
  • I’ll get myself a spray bottle with a fan built on it.

It never occurred to me to sit at the edge of the kiddy pool and stick my feet in, but I just might do that, too. Of course, by the time I have a huge floppy hat, breezy muumuu covered in Hawaiian flowers, and oversized sunglasses on, my granddaughter might just be mortified at me shouting encouragements from the side of the pool.

But it’s either that or stay home, and since they don’t televise her swim meets on ESPN, I don’t have a choice now, do I? :)

References:
http://www.healthline.com/health-news/ms-multiple-sclerosis-patients-more-sensitive-to-heat-052113

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Celebrating our Earth

African-American family standing in park

With the hassles of our daily lives, it is often difficult to stop and smell the roses. When rushing from one place to another, we may miss the beauty around us. With so much going on in our personal lives, we need to be reminded to practice self-care, and take a break. This Tuesday, April 22nd, take a break from the hustle and bustle and enjoy your surroundings. April 22nd is universally known as Earth Day, the one day out of the year that we are reminded to honor the environment and pledge to respect our Earth.

This Earth Day, take a moment to enjoy what nature has provided. Throughout the country, many individuals choose to participate in community wide Earth Day events; here are some ways how you can celebrate the Earth in your own home.

Use power minimally:

  •  Allow the sun’s natural light to enter the home and light up your surroundings.
  •  Utilize nature’s natural dryer and hang clothing outside to dry.
  •  Unplug electronic devices that are not in use.

Prepare a fresh local meal:

  • Check out your local farmer’s market and support local agriculture. Click here to find one near you!
  • Try to avoid the oven – prepare a fresh dish from your findings at the market.

Garden:

  • Plant a tree, or flowers for your home. Trees, shrubs, and grass all help to eliminate carbon dioxide from the air.
  • Ask your local gardening center for tips on low maintenance plants and the best plant for your area.

Reduce, Reuse and Recycle:

  • Learn about your community’s recycling program. Many cities offer programs to encourage recycling!

What activities do you have planned to celebrate our earth?

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Let’s Go Outside…

So we’re coming up on that time of year again, where winter will be a memory and the times give way to the arrival of spring! Though some areas across the country are still experiencing the last remnants of winter, spring is upon us and we can start going outside again without the harsh and bitter cold, and perhaps before the hot and humid summer feel…

How do you like to take advantage of the nice weather? Perhaps you have a certain activity you like to do outdoors when the weather permits? Well, if you’re looking for something to do outside, here are some ideas to celebrate the end of winter!

*Please remember to consult with your physician before taking on any new exercise or physical routine*

  • Take a walk- If able, taking a stroll around the neighborhood with a friend or relative can be an enjoyable and relaxing time to chat and get some exercise
  • Like to garden? The winter months were definitely not kind to plant life, so planting some fresh flowers and vegetables can add rejuvenation to the ground after the harsh cold
  • Attend a sports game- do you have a friend or relative who plays in a little league, or someone who plays in a sports league for fun? Going to a game can be relaxing and entertaining and a way to enjoy the sunshine!
  • Like to read? Sitting outside with a good book or magazine can provide a chance to enjoy the change in weather

So what are some of your favorite outdoor activities?

 

 

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