A Spoonie Does Disney: Part 5

This is the final part of a 5 part series about my experience, as a spoonie, vacationing at Disney World. Here are parts 1, 2, 3, and 4.

I discovered that my love for roller coasters has become tainted. I’ve never been one for the fucking insane most adventurous rides, but I do love a good zero to OMGWHEEEEEEE! with the upside downs and sharp banking. So it was disheartening to find that I was really going to have to suck it up and take some real pain if I wanted to ride the coasters at Disney. (And the ones I rode at Universal Studios at the conference block party. Consider wearing body armor if you’re going on Transformers or the Minion rides.)

The first coaster we rode was the Aerosmith RocknRoll coaster. First of all, holy crap on a cracker, y’all! I think that coaster would have been rough, even without the fibro. It was pitch black for the first 10+ seconds of the ride. I made my throat sore, screaming for my life during that coaster. It ended up being fun, but holy shit was it rough on my neck. The same is true of Star Tours, Everest, and Space Mountain. All a lot of fun, but are murder on the neck and back. The new Seven Dwarfs Mine Cart coaster was fun and much easier on the neck. It didn’t leave much room for my legs, which made for a lot of pain around the curves, as my legs and knees mashed into the lap bar.

Ultimately I would have been sad if I had let my fibro be in charge and hadn’t gone on any of these rides, but the price is pretty steep. I said “shit” and “fucking ow” as much as I laughed and said “whoo”. Drug up in advance, people!

Line up, everybody!
After my experience of standing in line for Soarin’, I wanted nothing to do with standing in any line for very long. If we couldn’t fast pass something, or the wait was longer than 30 minutes, we just didn’t do it. We did a fast pass for the Aerosmith coaster, so not a big deal. We hit a big snag in our plan when we arrived at Everest at Animal Kingdom. No fast passes were available, and waiting in line was going to be almost an hour. But then, an awesome cast member at the fast pass kiosk told us about the single rider line. It’s one of the few rides in Disney where you can get in a separate line if you’re planning to ride by yourself. You become a seat filler with the odd numbered parties who all want to go together. Mike and I ended up on the same coaster, just different cars, and only waiting about 10 minutes! I’ll be honest, when we started going backwards in the dark, I wish I had had Mike’s freckled arm to squeeze until his arm would break. But overall, it was really fun and we were able to cross that coaster off our list.

At the new 7 Dwarfs Mine coaster, waiting in line for an hour was just fine because I had my wheelchair by then and the line was wheelchair accessible. But, as is the case with many older buildings and walkways, Space Mountain’s regular stand-by line is not wheelchair accessible. So a cast member directed us to the fast pass line to get a return time, as the new fast pass line is wheelchair accessible. I think they wrote the time down wrong. Rather than an hour wait, we only waited 15 minutes. Make sure that whomever is pushing you up and down the steep angles the fast pass line takes is in peak physical condition. Mike was a trooper, hoofing it up those inclines and preventing me from become the physical comedy trope of a person in a runaway wheelchair on the downward slopes. At one point, the rubber grip on one of the handles came off while going downhill, which made things interesting. After we managed to avoid fiery collision, Mike parked me and went back up the line to find it. It’s terribly awkward to be sitting by oneself next to a line of other people. I should have started quacking to emphasize my current state and make everyone feel better.

After our arduous journey over hill and dale for many a fortnight, depleting our skeins of Tang and supply of freeze-dried lembas bread and limbs quivering from all that they had to endure, we finally reached a place of rest on the Mountain of Space. There we found rest from the kind mountain villagers, who prepared us for the next phase of our fantastical journey. We hobbled toward the space pod, which would carry us to our destination, only to find our path blocked. Downcast though we were, we found comfort in the continued care of the villagers. The town crier regularly took to the village main square to announce how the work to clear our way goeth. As I rested in my transport, I felt the growing unrest from a faction of villagers. I worried that their dismay would turn toward me. After all, had I not walked from my transport to the space pod? Had we not taken our place in line before those who had waited what seemed like lifetimes? But we stayed the course, stalwart and sure, for the road had been hard and our journey far.
But what to my great joy when the town crier sent forth word that the way was open and our journey into the stars was to recommence! Into our pods we settled; such great anticipation leaving all aquiver. We began, and the wind blew my hair. I felt the chill of dark space fill my nostrils and promise thrills beyond imagination.
Wikimedia Commons

Suddenly, cool, blue light flooded the sky. We were enveloped in the beacon that was foretold, the beacon that would let all who passed know that their hard work could be put to rest. It was time for the prize for which we had waited so long.

And then we zoomed around in the dark. It fucking hurt, but damn it was fun.

A Spoonie Does Disney: Part 4

This is part 4 of a really long blog post, that’s been broken up, about my experience at Disney World as a spoonie. In case you missed them, here are Part 1, Part 2, and Part 3.

Walkin’ and a Wheelin’
I knew there was a strong possibility that I would need a wheelchair at some point during my stay, but I really wanted to avoid it, if possible.
It was probably just pride and not wanting people to stare at me. And they will. Let’s just clear that up right now. I also felt like I would be an imposter. Certainly there are people who really need a wheelchair. I just needed one because my feet and legs hurt. When we went to Animal Kingdom I concocted a theory that, biologically and at our core, we are all animals. In the wild, if an animal is hurt and dying, they are often left by themselves with Arnold the Ape saying to everyone else, Sucks to be that dude. Or, it’s the signal for other animals to attack. Easy prey. So that’s part of the reason why we don’t want to be seen as weak or injured in, say, a wheelchair. It’s a primal fear. I think my theory is genius. Mike patted me on the head.
Clearly the cleaning staff agreed with me.

I knew after our Friday night at Epcot that I was going to need a wheelchair at some point the next day. Our night at Epcot was lovely, despite the pain in my legs and feet. I was able to mitigate the pain with lots of sitting and booze. Unfortunately the night ended in tears. We stayed late for Magic Hours so we could ride Soarin’. Standing in line for 30 minutes did me in. I could ignore the pain if I was moving or off of my feet, but the feeling of hot knives stabbing the bottoms of your feet is pretty hard to ignore while standing still. And once I rode the ride, I didn’t even have the satisfaction of my waiting paying off. Seriously? Soarin’ really wasn’t any different than the experience they used to have over at Magic Kingdom, where you were surrounded by 360 degree theater screens and felt like you were moving with the screen. Really the only difference was that we hung in chairs from a gondola and had air blown in our faces. Plus, the picture wasn’t in high def and was blurry and made Mike and I queasy. Once I got off the ride, I hobbled to the bathroom, where I received the final insult: a tampon trashcan cut me. (Wouldn’t that be a great movie title? “Epcot Tampon Trashcan: The Final Insult”, starring Steven Seagall and Lucy Lawless!) You know, those silver boxes on the wall? As I sat down to pee, I snagged my pinky finger on its tetanus-y hinge. (Now I’m pretty sure I have chlamydia or something.) I burst into tears and gave in to my pain and exhaustion.

Feeling better the next day, I decided to walk Hollywood Studios, (if you’re going to walk in any park, Hollywood Studios is the place to do it, as it’s smaller than the rest) and Animal Kingdom.

By the end of Animal Kingdom, I felt sick, worn out, and wishing my legs could be disconnected from my body for awhile. We napped at the hotel and then made our way to the Magic Kingdom via bus transportation that runs through the parks and resorts. I decided a wheelchair was in order.

A quick word about transportation while in a wheelchair: Almost every time we boarded a boat or bus to get places, Disney cast members went out of their way to help and make sure I got on first. One bus driver even kicked some guys off trying to board the bus while I was getting on. Every driver, save one, that pulled up came out to ask if I needed to board their bus. But sometimes, you have to be assertive. We ended up not being able to board a bus because the driver didn’t make them wait until he pulled up to the stop and people are dicks and packed in the bus.

Mike was able to easily secure a free one through the concierge. There were also plenty of chairs and scooters available to rent within the parks. The chair was nothing special, just a worn, standard chair. If I was by myself, I was able to learn pretty quickly how to wheel myself around. I quickly discovered that a non-skinny person would need a wider chair. I fit into it just fine, but the fact that my thighs touched the metal sides quickly became a problem. The metal panels, heated from the friction of the wheels, burned the sides of my thighs. This prevented Mike from walking too quickly or required that I suck it up and endure the burn. So it may behoove you to find a chair that’s wide enough for that not to happen/ones without metal sides, rent a scooter, or bring your own chair. Mike said he’ll want to rent a scooter next time so he wouldn’t get worn out pushing me around. In most places it wasn’t a huge issue. But in places like the hills between Fantastyland and Frontierland and the fast pass lane of Space Mountain, it got a little dicey. All in all, I’m glad we had the chair. I wasn’t in nearly as much pain as the night before. The night still ended in tears, but that was because I was exhausted and scared to death by the Haunted Mansion. Because, apparently, I have the same grasp on reality as a 3 year old.

Part 5 will focus on riding the rides as someone with fibromyalgia and navigating the rides while in a wheelchair.

A Spoonie Does Disney: Part 3

This is part 3 of a long post I’ve broken up, detailing my experience at Disney World resorts and parks as a spoonie. Here are parts 1 and 2.

Swedish massage
With the exception of the massages I received in the hospital after my girls were born, I’d never had a real full body massage. Mike suggested that I get one, and I’m not one to argue when encouraged to pamper myself. I opted for the Swedish massage, as it seemed to be the less intense of the two types that were offered.
On the afternoon of my appointment, I walked into the bright lobby of the Ship Shape Health Club & Spa and was led by the receptionist to their massage waiting area. Once we walked through the door to the massage area, I was instantly transported. It was as if I had stepped through a wormhole into tranquility. The light was a soft turquoise and dim, the room gently lit by candles and a beachy chandelier. In the waiting room were several high-backed chairs that I could have easily snoozed in. I was encouraged to partake of the fresh fruit and orange-infused water on a counter in the room.

If you ever go and decide to book a massage at the Ship Shape Health Club & Spa, ask for Mary. She was my fabulous masseuse. I told her that I have fibromyalgia, and she knew exactly what I lived with and needed because, as it turns out, her mother also lives with fibro. Over the next 50 minutes, she was able to help me relax and work out a good deal of the pain I’d been dealing with lately. She was able to unlock my hip, doing so without further aggravating the pain in my back that was causing it. (She told me she could tell my hip was bothering me by how I was laying on the table.) And, can I just say, warm, wet towels wrapped on the feet….heaven! By the end I had to keep reminding myself where I was so I wouldn’t think out loud, because of how relaxed I felt. I was also proud of myself for not having farted, drooled, or snored.

During my time there, I never felt rushed. In fact, I was encouraged to take my time and relax. Once my massage was over, Mary gave me more water and led me back to the massage waiting area. She made sure that I felt as though I could stay there and rest as long as I needed. I definitely felt as though I was the only customer who mattered, and that my individual needs were met while at the spa that day. I’m pretty sure that I need to get my rheumatologist to write me a prescription for massages so I can try to get insurance to pay for them. I’m thinking a dosage of 1-2 per day should do the trick.
I left the spa feeling loose and light and almost daydreamy. The people who walked past me and squealed at the pool were just fuzzy background noise. My mind was quiet; I wasn’t having to think about any pain that was plaguing me. I felt ready to take on the convention event at Universal Studios that night and the Disney parks in the coming weekend. I mean, I was fixed! She cured me, especially of that pesky hip!

Naturally that meant I had to go and break it again.

To be continued…

A Spoonie Does Disney: Part 2

This is part 2 from a really long post about my experience at the Disney World resorts and parks as a spoonie. You can read part 1 here.

Speaking of food, plenty of it was available during my stay. There were several restaurants within the hotel itself, (which is attached to the Beach Club Resort.) Just make sure you have reservations well in advance if you don’t want to risk having to wait to get a table. Several mornings I popped down to the Captain’s Grille to get breakfast. While they had a well-stocked buffet, I opted for ordering from the menu all but one time. My hip, legs, and feet had been killing me, so I had no desire to get up and go get my breakfast. The food was pretty good and, considering it’s Disney, wasn’t horribly overpriced.
Citrus-scented challah french toast with fresh strawberry compote, white chocolate drizzle, and lavendar-infused syrup anyone?

A boat ride away were Boardwalk-style cart vendors with hot dogs, corn dogs, margaritas, pizza, and funnel cake and more sit down restaurants. I was disappointed that Cat Cora’s restaurant was closed for renovations.
And if you can’t leave your room because you can barely walk, there’s always room service. Yes, it’s a bit overpriced, but the prices aren’t bad considering that it’s Disney room service. And the food you receive is actually good.
Oh, nothing. Just pan-seared chicken with butternut squash pureé, pomegranate reduction, pumpkin seed pesto, sautéed squash, and fergola.

A Spoonie Does Disney: Part 1


Last week I got what I’ve needed for a very long time: a vacation. Mike had a conference for work down in Orlando, so I tagged along. The plan was that Mike would do his conference thing, I would do my sleep in as late as I wanted, order room service, get a massage, and adopt an almost monk-like vow of silence thing, and then we’d hit the Disney parks on Friday and Saturday. As I prepared for the trip, I wasn’t quite sure how I would handle Disney as a spoonie and what sort of accommodations Disney would provide, should I need them. Now that I know, I thought I would share them with the rest of my fellow spoonies.

On Tuesday afternoon we left our loud, needy, and whiny quiet, well-behaved, lovely children in the capable hands of Mike’s dad and my mother and flew down. The Disney Yacht Club Resort was one of the hotels that the company who put on the conference contracted with, so we decided to stay on property there. Because we stayed on property, we were able to ride on the Disney Magical Express from the airport to our hotel and Disney took care of picking up our luggage and delivering it to our hotel room. As a spoonie who had just had a really uncomfortable flight and wanted nothing to do with lugging heavy bags around, this was a fabulous free service. It did take longer for us to get to our room and for our bags to arrive than we had hoped. Fortunately, we were prepared and had packed a change of clothes in our carry ons so we were dressed appropriately for our dinner reservation at The Yachtsman steakhouse.

Once we stepped into our room, (and I flopped on our bed) I knew I was going to be really comfortable in the coming week. The bed was soft, but firm, and I had access to several pillows, as we ended up having two queen beds in our room. My only real complaint was that there wasn’t really an accessible outlet to plug my heating pad into while laying in bed. Our room overlooked a lawn and small gazebo that was used for weddings. Across the lawn was the lake and dock where boats ferried visitors across the way to the Boardwalk and to both Epcot and Hollywood Studios.
It’s impossible to wake to a sunrise like this and not feel peaceful.

Serenity Now
With the exception of some busy times in the lobby, I never felt overwhelmed by people or noise. Even their expansive pool never felt crowded, nor filled with too many sounds of screeching children. If part of your exercise routine, as someone with chronic pain, is swimming, you’ll definitely be able to do that here. Actually, there are two pools: the large Stormalong Bay and the smaller and more secluded Admiral’s Pool. Dotted around the pools were one of my favorite features, the hot spas. For me, the hot water and water jets were perfect for relaxing my muscles. (Especially after Mike talked me into swimming in the pool one night when it was only in the 60s. I may have waddled quickly to my towel mumbling, Coldcoldcoldcoldcoldcold, a la Anna after tumbling into the stream in Frozen.)
Located at the pool was quick service food and a fully stocked bar, so I didn’t have to go far to have a yummy lunch and scrumptious adult frozen drink. Any spoonie knows that, the less energy you expend, the better. It was nice to not have to leave the pool, go to my room and get dressed, and then find some lunch that was worth eating.
My view as I ate my lunch.

Other peaceful places…and a Mai Tai.

The post was getting too long, so I’ve broken it up into 5 parts. More A Spoonie Does Disney to follow, including my thoughts on food, services, and accessibility and mobility to follow.