Instagram

Instagram has returned invalid data.

Follow Me!

TIPS

My travels with multiple sclerosis

July 16, 2013
Cathy Chester

Cathy Chester

Guest blogger Cathy Chester contributed this first-person post. Her experience living with multiple sclerosis–and not allowing it to interfere with her travels–is inspiring. Her suggestions are helpful to anyone traveling with a chronic health problem.

 

“The World is a book, and those who do not travel read only a page.” ~Saint Augustine

I’ve lived almost half of my life with Multiple Sclerosis (MS), an autoimmune disease that affects over two million people worldwide. MS is a chronic, unpredictable disease that is thought to attack a person’s own immune system, causing issues such as fatigue, low vision, weakness and numbness, problems with bladder and bowel, cognitive deficits and paralysis.

Each person has MS differently; no two cases are alike.

Most people who are diagnosed with MS are between the ages of 20 to 40; though there are have been cases of people being both younger and older.

It is not a fatal disease, yet patients with the more serious type of MS may experience complications that then become fatal.

My MS has manifested itself with issues of numbness and tingling (I can’t feel my right leg), weakness (when I’m tired my legs give out or I walk like I’m drunk), some bladder issues, and overwhelming fatigue (Imagine how you feel when you’ve had the flu. Now multiply that by 1,000 times!)

Two enemies of people with MS are stress and extreme temperatures. These two things can lead to exacerbations (our word for a “flareup”). They are both as uncontrollable as MS.

So you can imagine the difficulties that come into play when it’s time to take a vacation.

The key for anyone with MS to have an enjoyable time away is to pre-plan their vacation. It’s an absolute necessity. Why?

For me, I need to plan my schedule in advance. Then I will know when I’ll be able to take the rest my body needs during the day. Resting is not a luxury; it’s a necessity.

I also want to know where the available (and accessible) bathrooms are located, how accessible the hotels, restaurants and exhibits are, and how long I will be traveling via car, train or plane.

Let me give you an example of a recent vacation I had.

Last week, I returned from a conference for a pharmaceutical company I work for as a Peer Resource. My husband and I extended our stay after the conference by including a few extra days to visit family.

Visiting family and friends that we see once or twice a year is always a great joy to us. We look forward to that special time together.

Seems simple enough, right? Well, living with multiple sclerosis can be difficult on a normal daily basis. Traveling with MS can drive you absolutely crazy!

As soon as I found out where we were vacationing, I asked myself, “Will the change in climate cause an exacerbation?” “Will I have time to rest between events?”  “What will I do if my legs give out and I’m nowhere near a rest stop?” “What if my bladder acts up and I can’t find a rest room in time?”

The list becomes endless.

Don’t allow your travel plans to overwhelm you. Learn to pre-plan your trip as best as you can.

With proper planning and a positive attitude your vacation cannot only be pleasurable, but also memorable.

Something I learned to do a long time ago was to make lists for myself to prepare for my vacation. Below is my list, but feel free to tailor it to your own specific needs:

  • Order refills for your prescriptions a few weeks prior to vacation.
  • Count out daily medications, and place them into weekly pillboxes or a medication travel pack.
  • Pack alcohol wipes, cotton balls, band-aids and needle clipper, if needed.
  • Purchase over-the-counter medicines in case of a headache, upset stomach, and sunburn or skin irritation, etc.
  • Bring a cooling pillow, armbands or vest in case of hot temperatures.
  • Carry a travel pillow, earplugs and/or eye mask with you for restful sleep.
  • Enter the names/specialties of doctors into your cell phone. The specialty could prove helpful in case of an emergency, and others will have an easier time looking up your doctor’s name and phone number.
  • Use an app such as “AroundMe” (free from iTunes) that can instantly tell you where to find banks, gas stations, hospitals, parking, pharmacies and taxis. It also provides a 7-day weather report.

In the years since I’ve had MS, I have not allowed my disease to stop me from traveling. I’ve traveled several times to Europe, spent vacations in the Canadian Rockies, Arizona (including The Grand Canyon), California, Washington, Texas, every state on the East Coast, Wisconsin, Illinois, Antigua and The British Virgin Islands.

Planning ahead can ease the tensions you may feel about traveling with your MS. A little effort before you leave home can make a world of difference by giving you the chance to feel better about leaving home for an extended period of time. It will help you feel relaxed, and ready to enjoy your journey.

Where are you traveling next? Do any health concerns give you pause?


Cathy Chester is a writer, health advocate, and author of An Empowered Spirit, a blog that empowers people to live a healthy and vibrant life after the age of 50.  She is a blogger for The Huffington Post, and a blogger/moderator for both Healthline and MultipleSclerosis.net as well as a peer advocate for Teva Neuroscience/Shared Solutions, helping others navigate the difficulties of living with a chronic illness. She is a speaker on behalf of The National Multiple Sclerosis Society, educating caseworkers at nursing homes and assisted living facilities on the treatment and care of patients with MS. She lives in New Jersey with her husband, college-aged son (when he’s home!) and three adorable cats.


  • Reply
    Sheryl
    July 16, 2013 at 11:47 am

    Cathy is very inspiring for all of us! So glad, Cathy, that you don’t let your condition stop you from living your life fully. People should all take a lesson from you.

    • Reply
      Cathy Chester
      July 17, 2013 at 11:37 am

      Thanks, Sheryl. We learn from each other. I have my own mentors, and one is you!

      I am glad you enjoyed my post and left your lovely comment.

      Best,
      Cathy

  • Reply
    Nicole
    July 16, 2013 at 12:08 pm

    Cathy you went to Europe several times. Wow! For me it’s a challenge to go only an hour away from my home. But I am proud to say that I have been getting out more in my home town. I go around like I’m a tourist. I take guided tours and visit local museums. I guess I’m using this as practice for when I get the courage to travel to Europe like you. Also, thanks for the pre-travel tips.

    • Reply
      Cathy Chester
      July 17, 2013 at 11:38 am

      Getting out at all is the key, Nicole. We have different types of MS, as you know. The key is to be happy every day and do what we can with our ABILITIES!

      Thank for sharing your thoughts.

      Cathy

  • Reply
    Michelle
    July 16, 2013 at 5:39 pm

    Yes, I’ve travelled extensively too with ms. I went to Belgium, Denmark, Norway and Sweden last year.
    I’ve also been around pretty much most of the west coast of America, Antigua and Mauritius, since my dx. I live in the UK where our weather is quite variable – at the moment it’s pretty hot – although not as much as much as Death Valley, lol.
    Next year I plan to go to Canada all being well. I hope to be able to get travel insurance as I’ve had a few(!) health issues lately, including a few emergency admissions. Realistically, I know it’ll be pretty expensive…
    I always refer to my ‘Packing reminder list’ I have a copy of on my laptop that I refer to whenever I travel. It helps remind me of things that I might, due to cognitive issues, forget 😉
    Also, take extra meds, just in case for some reason you end up being delayed from getting back (plus a doc’s note to confirm that they’re yours – I’ve got morphine!).
    Oh, and my cooling mist… 😉
    I’ve generally found planes, hotels, etc, pretty amenable if given enough advance warning.
    Good luck to you all.

    • Reply
      Cathy Chester
      July 17, 2013 at 11:39 am

      Great suggestions, Michelle, and I appreciate you sharing them with us!

      Have a wonderful summer, and keep up your positive attitude and light around you.

      Best,
      Cathy

  • Reply
    Joanne
    July 16, 2013 at 9:08 pm

    Hi Cathy,
    Just took a trip to Cancun, Mexico and learned a few things the hard way. I have only been diagnosed a year and a half and thought I could power through if I needed to. Not!
    Here are a few tips from that experience:
    1. I had been having issues walking any distance so called the airlines to ask if they could seat me up front. I was told “no problem, let them know when you check in”. Not only was I told NO, but they were rather rude about it. I sure look healthy, right? By the time I managed to get to the very last seat on a plane that felt a mile long, I could barely walk. They had a wheelchair waiting for me when I landed and with rest I did okay on our vacation, but it did cost me the first day or so.
    2. Those cooling wraps for your neck are a Godsend!
    3. Bring a cane even if you don’t need it. It lets people know you may need a bit of extra time or attention. I found people where much more patient with the slow pace I need when my legs are wobbly.

    We’ve been debating whether or not I could handle Europe next year; you have me inspired!

    • Reply
      Cathy Chester
      July 17, 2013 at 11:40 am

      We all do our best, with the ABILITIES we have. Pre-planning helps. But yes, we have a long way to go to educate the public on the difficulties of living with an autoimmune disease. You keep your positive attitude up, and the rest will fall into place.

      So wonderful to hear your story.

      Best,
      Cathy

  • Reply
    Lisa @ Grandma's Briefs
    July 17, 2013 at 12:05 am

    I’ve wondered if those cooling wraps make a difference. Now I’ll have to get some before my next trip to the hot climate where my grandsons live.

    Thank you for the tips and for sharing your story. Helpful info.

    • Reply
      Cathy Chester
      July 17, 2013 at 11:41 am

      Yes, Lisa, For me they really do help! I know my neck gets warm and I try to cool it down, but having them for the wrists help as well.

      Thank you for sharing your thoughts~

      Best,
      Cathy

  • Reply
    Cathy Sweeney
    July 17, 2013 at 11:31 am

    So glad to see your article on Irene’s site. Excellent advice for others with MS to be able to continue to experience the joy of travel.

    Sadly, my niece was one of those who had very severe MS and passed away 3 years ago from complications. But she lived life as fully as she could for as long as she could — always with a bright smile.

    Happy travels!

    • Reply
      Cathy Chester
      July 17, 2013 at 11:44 am

      I am sorry for your loss. Their death diminishes all of us, and my heart bleeds. Blessings to you and your family.

      I am glad she lived a full life. She must have if she meant to much to you.

      Thank you for sharing your story. It is greatly appreciated.

      Best,
      Cathy

  • Reply
    Daniel
    July 17, 2013 at 5:20 pm

    Hi Cathy, don’t forget to take your disabled placard for car rentals. I keep a spare one in my suitcase.

  • Reply
    Cathy Chester
    July 17, 2013 at 6:30 pm

    Thanks for the reminder, Daniel. I should have added that in my post. Great reminder.

Leave a Reply

Share
Tweet
Share
Pin
Flip