This month we’re talking about “Doing Disney,” or experiencing a Disney vacation when you or your travel mate(s) have a chronic illness or other disability. I’m sharing my own story today, and we’ll have some amazing Guest posts coming up as well. 
Today is Groundhog Day, which we all know means a definitive prediction of how much longer winter will last. Because, you know, groundhogs know all! LOL! Well, today is also Rheumatoid Awareness Day. What does Punxsutawny Phil predict about #Rheum? Sadly, not just 6 more weeks, but a lifetime of continued chronic illness.
Rheumatoid Arthritis (RA) is an autoimmune disorder. That means the body attacks its own tissue as if it were a harmful invader. As a healthy body fights off a cold virus, mine battles its own healthy tissue. Rheumatoid Arthritis (which we are seeking to have renamed Rheumatoid Disease, because it encompasses much, much more than arthritis symptoms) is a debilitating disease that progressively worsens, causes permanent damage to joints, organs, and other tissue, and has no known cure. It is also something I have been living with for 19 years.
Here are some symptoms of RA:
What does this look like when I visit the Disney Parks?
Despite the very serious medications I take, an RA flare can occur on any given day and can affect any–or many–joint, organ, or other tissue in my body. For instance, when I participated in the 2016 Walt Disney World Marathon Weekend 10K, my right foot and ankle were inflamed, swollen, stiff, and sore. When you have an expensive vacation planned, and your body doesn’t want to cooperate, how do you go forward and still make it magical?
- Get adequate rest. If you’ve done a runDisney event, you know they begin before the rooster crows! That meant I had to leave my hotel room no later than 4:00AM. How did I get enough rest? I was in bed by 8:00PM the night before.
- Fuel your body properly. Proper nutrition is key to reducing the occurrence of RA flares for me. In this particular case, I made sure I ate healthy, wholesome foods the day before and started my very early morning with all the nutrition I would need for the event.
- Hydrate, hydrate, hydrate! With any physical activity, you need to be sure to drink enough fluids to replenish what you lose doing that exercise, but you also need to keep your body well hydrated to improve function of your vital organs. The heart, lungs, kidneys, and even your skin and blood function at their best when they get that simple ingredient! In general, I try to drink at least half my body weight in ounces of water each day.
What about a “normal” Disney day?
Those same three requirements apply! Prior to moving nearby, our family took many vacations to Walt Disney World Resort. I have had RA since 1997. Our first trip to The World was not until 2006. This means, I have had to consider my illness for every Disney vacation we’ve taken. What has that looked like realistically? In addition to getting adequate rest, fueling my body properly, and hydrating well, I had to know and acknowledge my limits. I tire easily. That’s common when your body is going non-stop trying to kill healthy tissue it perceives as harmful.
Traveling with my family, we always want to go, go, go, and do “everything,” but I have to accept that that is simply not possible. I have to pace myself and take frequent breaks. This can mean a return to the hotel room for an afternoon nap or several well-placed activities throughout the day that allow me to stop and sit awhile (take in a show, ride the Walt Disney World Railroad, enjoy an extended lunch, etc.). Living locally now and being Passholders/Cast Member family, I am able to pack loads of fun into shorter days and know I can return whenever I want. However, I do still have longer visits when family is here, when we do runDisney events, or when we host the Ultimate Field Trip week, when I need to be more diligent with self-care in order to get the most enjoyment out of my Disney Parks visits.
I am blessed with RA!
Say what? I have often said I am blessed with RA. Most would consider it a curse, but living with chronic illness has allowed me to recognize my humanity, to grow in my compassion for others, to better appreciate healthy, flare-free days, and to see life for its possibilities rather than its limitations. I choose to look forward in hope.
I am fortunate and grateful my body responds well to medication (for the most part) and that I have been able to maintain a pretty high quality of life. For many with RA, that is not the case. They may require a wheelchair or scooter rental for their Disney days, or perhaps need assistance during their stay. But you know what? Disney is there for those moments too! Coming up, we will have Guest posts that cover more of those special needs. I hope you will tune in for them and be encouraged by their stories!
I sincerely thank you for your support!
PLEASE NOTE that neither I nor my Guests are trying to garner sympathy in any way, but on the contrary, we hope to help people understand what we and others in similar situations experience, to bring compassion to those who have these limitations, and of course, to let you all know that having a magical Disney vacation with or without chronic illness or disability IS possible!
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How did it escape me that you have RA (RD)?? I’m also living the Disney life with it. June will be 25 years since my dx. ( I had definite symptoms for almost two years before dx) The first 9 years after dx my disease was pretty out of control and that’s where most of my current difficulties stem from “old damage” as my rheumy calls it. Once I began the combo of methotrexate and biologics we gained a bit of control ( as much as it can be controlled ) My daughter is my Disney sidekick and although (. Or maybe because) she has never known what it’s like to have a “normal” mom , she has grown up being my mobility assistant ungrudgingly and without frustration