My travels with multiple sclerosis

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?

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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.

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• Additional information on The National Multiple Sclerosis Society.