10 May 2016

Hands, Arms, Feet and Legs Inside the Vehicle

I’ve put it out there before, it’s one of the reasons the amount of content on the Gazette had to slow down, but I was diagnosed with Rheumatoid Arthritis a little over a year ago. It was a wrecking ball to my life and what I believed would be my future would be, but it was also a godsend because I finally had an answer as to what was happening to me. The not knowing was the worst part. Of course, with the RA it meant a whole new lifestyle, a whole new perspective, and a whole lot of medications. It has also meant a whole new way of exploring Walt Disney World, but first let me try to provide a little insight into my daily life.

RA is an invisible disease for the most part. The way I describe it is that my immune system is an overachiever, just like me, and doesn’t know when to stop. It goes from attacking illness and foreign bodies to attacking healthy parts of my own body. There aren’t a lot of solutions that don’t require your immune system to become nonexistent, because you have to put the monster to sleep to feel better, even if that monster is what protects you from other creatures. Your energy level sinks like a stone and you find yourself negotiating with yourself just to make it to the bathroom in the middle of the night. The only time its visible is when I am in incredible pain, called a flare, or if I choose to wear a mask to keep myself healthy. We’ll get further into the mask bit a little more later. One of the best descriptions of living with RA comes from Chrsitine Miseradino and is called The Spoon Theory. Go ahead and read it, I’ll wait.

Once I had my diagnosis, my first thought wasn’t how this was going to affect the Gazette or how it was even going to affect trips to Walt Disney World. I do have my priorities straight after all. No, my first thought was how this was going to affect my family, particularly the missus, and the conversations we had been starting around having a child. Then I thought about my health, I was just trying to get myself back into running, and we had just bought a house and I was thrilled to finally have a yard, a yard that I now wouldn’t be able to work in as much as I wanted to. Working with youth in my day job and having to be up, down, and constant moving was also a concern, as I wasn’t sure I could be as mobile as I needed to be. Living with RA was going to teach me all about balance.

All of the personal pieces are still debates and still keep me awake at night, not that joint discomfort is helping with sleep, but I digress. Everything is an internal dialog. If I eat this hamburger are my elbows going to regret it tomorrow? If I push too hard and mow my whole yard on Saturday morning, am I going to be able to walk to dinner Sunday night? Honestly, most of the answers I’m able to give myself are a definitive “Maybe!”

The tenants to remember with RA is that it is mostly invisible to passersby and colleagues, but it is completely and utterly exhausting, and you never know when or where it’s going to strike, only that a strike is going to happen sooner or later. So, we come to a visit to Walt Disney World battling these constraints. There is stress, there is a lot of physical demands, and there is very little of it that you can plan and control. Basically, the worst possible situation I could have imagined for myself. Ahead of the trip the missus and I sat down and had several long discussions.

Should I wear a mask while visiting? With an extremely low functioning immune system, I should do all I can to protect myself and my health right? Is the stigma of “what is wrong with that guy?” worth it? It isn’t what’s wrong with me, but rather I can’t run the risk of getting whatever illness you or your child has, because it is going to have a lasting effect on me beyond the fact that I’m going to take longer to get better. I wore the mask, sporadically. Basically, I’m not entirely ready to call myself out everywhere I go. It’s vain and I know it. I’ll probably change my mind in the next few years, but for now I’m still rolling the dice, and dealing with being sick more than I’d like to be.

Should we rent a wheelchair? I immediately opted away from the ECV option, if only because I was convinced I would do something wrong with the controls and end up running over some other guest just trying to enjoy their vacation. The short answer was, again, “no.” The long answer was I didn’t want to have it up front, but if I got to a point where I knew I couldn’t walk or carry myself any longer, we would grab a wheelchair for the days and times that I needed it.

Outside of these two considerations, we didn’t have a whole lot else planned ahead of time. Just like our daily lives it was going to be putting one foot in front of the other and deciding how best to meet the day each and every day.

Once there I was able to push through the first day or so with high energy. I was ignoring my body because my adrenaline of being back in Walt Disney World sustained me. It was definitely not the smartest thing to do, but my body didn’t notice so I didn’t take the time to think it through.

The first time I did notice something was when the exhaustion hit me in the afternoons. I still pushed through, but I mentally changed my strategy. Heck, I’ve always loved the long shows and rides, so this was a blessing in disguise. I got to spend some time in The American Adventure, on Ellen’s Energy Adventure, The Great Movie Ride, multiple rounds on the PeopleMover, it’s a small world (Have you ever noticed how many quiet, seated, and dark adventures there are in Walt Disney World?), or sitting on a bench and watching the parade go by. Wonderful! Sure, we called it an early night, but you need those every once in a while when you at Walt Disney World, right?

Wrong, I would push myself so hard in the mornings and during the days that I did not see the sunset or a single fireworks display the entire time I was there.

The next thing I noticed is that I wasn’t in my own bed. The pillows I use every night to keep my knees from touching one another or one of my arms tucked tightly against my chest weren’t there. The pillows I did have from Disney were okay, but they weren’t what I was used to. Neither were the sheets, comforters, and mattress. All of these pieces add up and they will keep you up and uncomfortable all night, regardless of how exhausted you are. Next time, I packed some of the comforts of home, just so I could sleep.

I have long been a believer that I would rather drive my car to the parks than be beholden to the transportation system. I love the monorails, ferries, motor launches, and even the buses, but I’ve always felt driving myself saved me time. Now, it saves me, period. I don’t have to wait in the elements or stand for longer than I need to. I can get myself to where I’m going before my tank bottoms out below Empty.

Driving my own car also allows for me to drive to Walt Disney World and set my own break pattern, not stuffed into a chair on an airplane where I can barely move and stretching is a luxury. I used to leave after work and drive straight through to Walt Disney World overnight, crashing the gates first thing the next morning. Now, I tend to make the trip in two days with a stopover at a hotel somewhere to rest and reboot. Part of this I leave at the footsteps of the RA, but I also know part of it is that I’m just not as young as I used to be.

I said earlier that I couldn’t plan and I wasn’t in control, but that’s not entirely true. Planning for a worst case scenario, something I don’t like to do because I’m eternally optimistic, can be extremely helpful. You may not need to utilize any of the plans you make, but know what and where your options are allowed me to enjoy myself a little more leisurely than if I had just been winging it.

The other thing that saved me were the friends I surrounded myself with. Between the missus and friends who were willing to accommodate what I needed, when I needed it, I was able to have a wonderful trip. I am eternally grateful to all of them, and don’t know what I would have done without them, regardless of the RA.

The mantra I have repeated time and again to people who ask about how RA affects my life is simple. It has changed how I will live my life, but it will not change my life. I don’t use it as an excuse, or something to brag about, and it certainly does not define me. I do use RA as something to laugh at. My hands clench up? I pretend to be a T-rex (of the “I don’t know how well this plan was though through” or “If you’re happy and you know it clap your… oh” variety). My leg is exhausted and being dragged around? I name it Smith or make some other joke about table legs working better than mine.

Rheumatoid Arthritis has changed my life, but perhaps I appreciate the world more now than I ever would have or I cherish those around me more than I would have. It is a learning experience, and I am a life-long learner. Quite literally now. It has changed the way I will walk down the road, but not my road, and certainly none of the rest and recharge that Walt Disney World has always brought me. I don’t know what I hoped this article would give you, but I hope you learned something, or if you’re living with this disease as well, maybe you found an idea or a glimmer of hope. I hope it brought you something, because I know it was a gift to me.


Anonymous said...

Wow Ryan, I had no idea. Between your words about your experiences and reading the spoon theory, I've just got tears rolling down my cheeks. Some days, it feels as if no one understands the struggles of people with "invisible" illnesses or limitations and I hope your words, along with the education of more people, will someday put an end to the ignorance. Who knows? Maybe we will find a cure or a really kick-butt treatment?!

I'm glad you were able to post some tips from your own experience. I hope it reaches others who might need it.

Just know that your Disney family is always here for you and will continue to support you and your family in all you do.

- Kacie

Cathy T said...

I am going to Disney next year with RA. I got several ideas and some peace of mind from your article. You also helped my family going with me to better understand what I may need. Thank you!

Ryan P. Wilson said...

Cathy, thank you for the kind words. This is precisely why I felt the need to write this article. I cannot tell you how much it warmed my heart to know I could help a fellow RA traveler! I hope you have a wonderful time, please reach out if I can be of any other help/source of ideas.

Chad W said...

Hi Ryan, Thanks for sharing. I really did not know anything about RA until reading your post and The Spoon Theory. It really paints a dramatic picture of the daily trials and tribulations that everyone else takes for granted. Knowing this makes me appreciate the things you and others with RA accomplish every day. I can't imagine how many spoons it takes to do a podcast with Mongello : ) Keep up the good fight! - Chad W.

Nancy said...

Hi Ryan. Thank you so much for sharing your story. I was diagnosed with an autoimmune disease about two years ago so I understand about having an invisible disease. Your story sounded so much like mine . I hope I never have to give up my Disney trips but you are right, it takes a little different planning now. I don't think I've heard of that book but I will definitely be reading it. Take care and best wishes.

TheTurnpikeGnome said...

All I can say is thank you for such a well worded piece. Not only does it raise awareness, but believe it or not, your experience speaks to other "invisible" ailments. When I was diagnosed with PTSD, I went through much of the same thought process and many of the same experiences. I hadn't been back for about 2 years, and worried about what if I have a panic attack, what if I freeze up and cann't move, what if this, what if that, what if, what if...sounds like you did the right thing, and no shame in taking you own pillows and blankets, if I'm anywhere but The Pop (it's my comfy happy place) I need them too :) You're not alone, and it's a learning experience, but these parks are meant for everyone, we just have to find our own way, even if it's not always "conventional"