Vacationing With MS: Small Expectations can lead to Large Memories

Patient Expert

The summer of 2015 was a bear. When every summer begins, I know that there will be many challenges that will make me well aware of just how hard MS can be. The temps increase, the myelin swells around my neurons, and MS takes center stage whether I’ve given it the solo or not.  And this past summer was worse than any in recent memory. I barely went outside and switching my “emotional” meds made my standard limitations much harder.

But wait. The summer of 2009 when I went on disability, that was a bad one. And come to think of it, the summer of 2010 when I needed a walking stick and ultimately a scooter - yeah that was a drag too. I don’t really remember 2011 so it couldn’t have been that challenging - but all pales by comparison to the summer of 2012.

That was the summer that we (my family of three) went to London, Paris and Berlin and it was most memorable. Filled with all time highs, all time lows and some incredible in-betweens. I learned so much during that summer and not just that I don’t have a taste for Marmite or that Mr. Whippy is the best soft serve ice cream with a cadbury stick I’ve ever had. I also learned that we can have a great vacation using our own customized list of what to do - and not let what we don’t do factor in on your time abroad.

London Bridge is Falling Down: But Amy is not!

Living with my version of MS, I know that lists of things to do and don’t do are not always clear at the beginning of the day. After all, things can get a bit wonky, especially on the way to the loo when you’re knackered.  And there are people who assume you’re pissed when you are just trying to get through a crowd or that you’re being a bugger when you're holding up foot traffic or trying to get on and off a bus.

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Knowing all this to be true, our London plans would be a success if we were able to accomplish a couple of things.

  1. Have tea and time with my cousins. ☑
  2. Go out to eat on the Thames. ☑
  3. Partake of a few touristy things. Including, but not limited to: The London Eye, the Tate Museum and a local pub. ☑☑☑

For the rest we would use a take-it-as-it-goes approach, and this really saved us from disappointment and allowed us to enjoy all that was. Taking the “while we are in London we must do this” off the agenda made this time a vacation with a lot more vacation and a lot less frustration.

While I was there I learned that, yes, the cobblestone streets are really difficult to roll on. The busses “kneel” into a position that makes it easy and accessible to peeps who have wheels. The Brits can be very patient when you delay the bus departure (for the most part!) and they serve this awesome beverage at the pubs called a shandy. (It turns out I love beer when it’s mixed with lemonade! “Who knew?”)

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For us, taking a “locals” approach made it a lot easier to be a tourist with limited abilities. And when you decide the details of what “to do it all” means to you, a little pre-planning will make it easier to know what to expect.  And “what you expect” can be the difference between a great time and a frustrating one.

My experience is that given the opportunity, people are accommodating and even feel good about assisting. Taking a nap after tea is helpful to all travelers, even the most able of them. 'Cause lets face it, everyone gets a bit cranky at that time of day and there is no better way to recharge than with some biscuits, english tea (what the locals call, tea) and an afternoon nap on the sofa. During which my scooter (and my peeps) can all recharge.

So! In summary: London was great for peeps with limitations. The buses are great (the tube, I didn’t even try!), cobble stone streets ranked a seven on the Richter scale, and many sidewalks and curbs had reasonable accessible cut-outs.  Napping and tea-time are on the must-do-list for any trip to London and expectations were met everyday if we at least did that.

Final thoughts:

  • Shandy-yes.
  • Marmite-no.
  • Cousins who make it wonderful even when doing nothing in particular - Brilliant!
  • Low expectations create better memories - yes!

(For those of you that don’t have cousins in London, please substitute others who make sitting still wonderful.)

Memorable Moments Not Moving

Some of the most memorable moments happened while sitting in between movements.

For More on Traveling With MS:

Planning a Vacation with Multiple Sclerosis

Summer Vacationing with Multiple Sclerosis

Taking MS on the Road: International Travel, Spasticity, and Hot Baths