Mickey Mouse, Multiple Sclerosis and Me: How Not to Vacation when you have MS

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It was this time two years ago, the spring of 2007, when my family had this "wonderful" idea of going to Walt Disney World for Spring Break.   It was one of those vacations I will always remember.   You know why? BECAUSE IT WAS THE VACATION FROM HELL!!

You have to understand that I love Walt Disney World.   I have been there many times and I am one of these people who adore the mouse world so much that each year I buy a travel book even if I am not going.   I have a friend who may be even more of a WDW fan than I am.   She sends me a travelogue from her times there each year complete with photos.   I once received twenty-five pages of notes about her vacation complete with tips on how to find hidden mickeys within the parks.   And so when I called this friend to tell her we were going to Walt Disney World during Easter Break there was a brief pause of silence before she screamed into the phone, "Are you crazy?"

In case you don't know, Easter week is the busiest time of year at Walt Disney World except for maybe some weeks during summer or during Christmas week.   It is not for the faint of heart.   My family all chimed in with, "How bad could it be?"   We just couldn't comprehend how crowded it would be.

And let's add some other interesting factors to this vacation.   My eldest son was coming down with a cold and my youngest son has autism and was entering into an extremely turbulent adolescent phase.   Now what am I forgetting?

Oh yeah...I had Multiple Sclerosis but didn't know it yet.

I was in that limbo stage that a lot of you are in right now.   I was having symptoms but I was still hoping that I was just imagining everything.   I remember sitting in the car for the long ride and my right leg began to go to sleep and it kinda stayed asleep for a long time.   Most of my thoughts for those hours were worries that I might have MS.

We had stayed in a cabin at the theme park in past years and this worked out well because it was quiet, secluded, and we could make some of our own meals without depending on eating out all of the time.   But this time we stayed in one of the on-site hotel rooms.   While the room was nice enough, it was small and we could hear everything from toilets flushing to kids running and screaming outside until the wee hours of the morning.   Needless to say, I never got a good night's sleep.

Rule number one of Vacationing when you have MS:

Your MS already makes you feel fatigued.Make sure you have a place to sleep that is quiet and restful!

One of the things that was very apparent about the particular hotel we booked for our stay was the very long distance it was from transportation.   While we loved the big lagoon and meandering walking paths, it was a really long distance from our room to any of the Disney buses which would take us to the parks.   I remember some very weary walks home in the evening when I just wanted to crumple to the ground and camp out right there.   But I just had to keep walking in order to make it home to bed.

Which leads me to my rule number two:

Make sure that your transportation system is close to your hotel.If your vacation involves a lot of walking anyway, you do not want to add to this by even more walking to your car or other transportation.

On our first full day there we went swimming and by the pool there was a large hot tub.   Sounds good?   Relaxing?   Ummm...no.   Not if you have MS!   Remember that I did not know if I had MS yet and definitely did not know about heat induced symptoms.   I sat in hot water for about five minutes when I felt as weak and limp as a wet washcloth.   And when I emerged I found I was staggering.   I didn't know what was wrong with me.   I thought I might be coming down with something.

Merely Me's Rule number three of Vacationing when you have MS:

Forget about hot tubs.After my diagnosis I heard tales that one of the unofficial ways to test to see if you have MS is to get into a hot tub and see what happens.Maybe not every person with MS will have a reaction but I sure did!

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Remember all those Chevy Chase Vacation movies where the dad makes all these detailed plans and by golly you are gonna have fun no matter what even if it kills you?   Welcome to my family.   We had plans to see at least two different parks during the day with reservations in between for special character meals and so forth.   On the first days there we were so busy rushing from one adventure to the next that we forgot one main thing.   To rest!   We all felt it.   By the third day we spent all morning and well into the afternoon just lieing around in the hotel room.

And here is where rule number four comes in:

I don't care how much fun a vacation place may be.You do not need to do everything in one day.Pace yourself.Rest often.No vacation is worth exhausting yourself beyond repair.

Did I mention the crowds yet?   Okay imagine a sea of slow moving people pretty much as far as your eye can see.   That is what it was like during some days at Walt Disney World during Easter week.   If you weren't claustrophobic before you would be after wading through this human sea.   My youngest son did not fare well with the crowds.   He became anxious and so did I.   The crowds definitely added extra stress that we did not need.

Rule number five for people who travel and have MS or any other disability:

Your vacation should be a time to unwind and not a time to increase your stress and anxiety.Do not go to places you will know will be crowded or packed to capacity.It is not worth it.

The one thing I do love about Walt Disney World is their service.  As I have mentioned before, my youngest son has autism.   When we go to WDW one of the first things we do is to stop at the Guest Relations and we get a special pass for our family.   I always bring a doctor's note specifying that my son has autism but we haven't ever needed it.   The workers there are skilled and take one look at my son and know what is up with him.   I am not sure that is a good thing but it gets us speedy service.   What the special guest pass does is allow us to get into the handicapped queues for the rides.   Believe me that during the Easter week these lines were not short either.   But they were certainly shorter than the regular lines.   It was a real lifesaver.   And the Disney staff treated my son like a prince.   Everyone was so kind.   I would imagine it would be the same experience for someone who tells them that they have MS.   I honestly don't know how it would go as I didn't know at that time that I had MS.   If you have MS and have been to Walt Disney World I would love to hear about your experience.   I was just so grateful that Disney has special provisions for people with disabilities.

My rule number six for travel when you have MS or another disability is:

If the vacation spot you are going to has special provisions for people with disabilities, use them if you need them.There is no shame in utilizing services which may make your stay so much more pleasant and do-able.Sometimes this makes for controversy and I can never understand why.Would someone want autism or MS in order to get these "breaks"?I think not.

How does this story end?   Well of course I am leaving out many details and humorous anecdotes.   Perhaps I will save those for another time.  In the end we were supposed to stay for six days and we left a day early.   We had enough.   My eldest son was becoming sicker with his cold. My youngest son was becoming more anxious and overwhelmed.   And I was becoming too weary to enjoy anything.   At day five my husband, who is much like Chevy Chase in those vacation movies, reluctantly agreed that it was time to go home.   I know it felt like defeat to him but sometimes you have to know when to raise the white flag of surrender.

After my official diagnosis which came six months later, I was grateful that things didn't turn out worse.   My symptoms were relatively mild.   The week that we went was unusually cool for Florida.   I grimace to think of how things would have been for me in extreme Florida heat.   What if I had lost my ability to walk in those crowds?

In a way it was nice to be oblivious to know that I had this disease.   Now I am more cautious and wary about making any vacation plans.   Things need to be more carefully thought out.   But in a way it is nice to drop the vacation itineraries and detailed plans of how to have fun and just go somewhere to relax.   My MS is forcing me to slow down.   And that isn't such a bad thing.   Our next vacation will be in a cabin in the woods communing with nature.   What is on my schedule?   Naps.   Daydreaming. Watching the clouds roll by.   Sounds perfect!

How about you?Please share your vacation or travel experiences here with us.Do you have any travel tips for people who have MS?We want to hear them!Remember that your story could help someone else.