Traveling with RSD
 

I am planning a trip to...gulp...Disney World with my mother in September. I LOVE Disney World but I obviously have some serious concerns about such a trip with RSD. I mean...I don't want to get off the couch...what makes me think I can handle a theme park.

But we have talked about doing this for YEARS...me and my mom. Mother, daughter trip. And since getting hurt it really has made me think that I need to do these things while I can. Right now it's my ankle...but what if it gets worse? What if the hard days become the impossible days? I know it doesn't do me any good to worry about things that I can't possibly know about...but I can't help it.

So...my plans are to bring a TENS unit, my heating pad, medications (obviously), and I have planned 2-3 sit down meals a day which will allow me to take it easy and rest several times a day. I have resolved to rent a wheel chair or electric cart if I feel like I NEED to...but I'm hoping that won't be necessary.

I walk and am on my feet 9+ hours a day at work...so I think I can handle it...but I have noticed a big difference in the way that I mentally process the pain at work and when I am not at work. Things like shopping with my mom at a mall are something I cannot handle for more than an hour or two...and those 2 hours or so are miserable. I think it's because at work my mind is constantly occupied by the millions of things that are going on or need to be done. At home...out with mom...I just can't seem to focus on something enough to distract me from the pain.

So...my concern is that I will be miserable no matter what I do on this trip. I am trying to stay positive...it's how I cope with the day to day stuff...telling myself that I NEED to get up and that I NEED to keep moving. I'm 26 years old and I am NOT going to curl up an die...but I have days when that is harder than others. And today, while planning my trip and reading guides, I found myself suddenly overcome with concern and doubt and I just needed someplace to vent and let it out.

So...any words of wisdom? About traveling? Advice? Anyone actually been to Disney or a theme park since their diagnosis? Anyone think I am totally nuts for even thinking about attempting something like this with RSD? Cause...right now...I have some serious doubts about whether or not I will be able to handle this.

Hi Catra.

I recently flew to the west coast of Florida from MD. The flights to and from were horrible, as the cramped airplane made me uncomfortable (we did upgrade to first-class on the flight down, so that made it a little easier. First on and off, bigger seats and more legroom). The altitude did not help either, plus just the stress of "running" around the airport, car rental agency and settling in at our hotel. I would suggest using a wheelchair at the airport so you don't have to walk forever (if you are flying). Plus you get boarded first and are the first to get off. However, once we got situated we could relax and enjoy our stay. The climate was wonderful for my pain and being in the sunshine everyday was very helpful.

I took my meds, TENS unit and heating pad, plus my favorite pillow and comfy socks. We always planned our outings around my pain and started later in the day so I could sleep in. It was during Easter when we went, so the water wasn't really warm. I was hoping to be in the water as much as possible, so I was just a bit dissapointed, but just being in the warm humid climate really turned my pain down (from a constant 8-10 to a 4-5). I thoroughly (sp?) enjoyed it and felt a whole lot better in their climate than here at home. I didn't want to come home! We have since decided to move down there permanently.

Just remember to pace yourself, listen to your body and get lots of rest. It sounds like a wonderful experience for you and your Mom. Have a fabulous time!

Kim

Catra, Just a suggestion, but you may want to contact Disney and explain your condition to them. They are experts in hospitality and may have suggestions and know things about how to negotiate the parks that you have not thought about. I did use the new motion sickness medication Bonine (OTC) and it did not make me as groggy as the Dramamine did. Another thing that I did was to check my luggage so I did not have to deal with it on plane changes or have to lift it into the overhead bins. I cost extra, but at least I didn't have to worry about it. I hope you have an amazing time with your Mom and enjoy all the magic of Disney. I have to admit that I am a teeny bit jealous!!! Lisa

HI Catra,
 

no ,you are not nuts to keep on living ,trying new things and going on vacation. you are smart to plan ahead, be prepared , pace yourself, enjoy any road bumps or detours along the way. LIFE IS NOT ALL ROSES BUT IT IS WHAT WE MAKE OF IT. .. AND OF COURSE OUR JOURNEY WITH RSD WILL BE WHATEVER WE MAKE OF IT ONE STEP AT A TIME . IT MAY AFFECT OUR BODIES BUT IT CAN NOT TAKE OUR SOULS/ SPIRITS. It may be a more difficult journey than the healthy road we once travelled but we can make it over the bumps and laugh along the way up the hill to conquer the mountiantop !!! geee i am sounding very philosophical ...oops sorry lol JUST KEP ON SMILING AND ENJOY ALL THAT YOU CAN STILL DO AND LET THAT ENCOURAGE YOU TO KEEP DOING MORE. wISHING YOU EVERY HAPPINESS AND A GREAT TRIP. PLEASE LET US KNOW HOW IT GOES.

oooooook. So here we go!!! Congrats on getting out of the house and going awayyyy!!!!

First off.... Contact the airport TSA supervisor no earlier than a week before your flight, and explain them your situation about being touched. I dont know if you have any metal in you, or have anything that you have to get taken. But i do know that the last time i flew, the TSA lady was so rough and mean after i gave her a whole shpeal about hurting me. And it caused my body to A HUUUGE flare as the TSA lady grabbed every single inch of my body. I clearly wear nothing with wires, and just gym pants to refrain from them speculating. Well anyways, to make a long story short I thought I was going to die alive as she rubbed, and pushed, and sqeezed every limb on my body, and I was swaring up and down crying my eyes out i literally could have killed her. I couldnt walk for days after, and my mom called the TsA and they investigated it, and next time that I fly, I call and the top lady will come walk me through tsa to prevent any of this. I have flown so much, and we all know the good from the bad, and her collegues were telling her just let her go she is fine. but noooo.....
so as a foretelling advice, it might be smart to just call and get that taken care of. Also, when i fly I bring a pillow to sit on and to lay against and blankets to keep me from the chill of the plane. it looks like i am camping, but it keeps my legs from doing bad things :)

best of luck to you and have a faaaabulous time on your vacation :)

Thanks everyone for the advice. It makes me feel so much better. I have everything planned so that we can pace ourselves. My mom has arthritis so she;s not exactly going to be dragging me around through the park. And we've been so many times to Disney that I have adopted the philosophy of not trying to fit everything in and just take it very easy.

It's a comforting thought that the weather will be good for me...that wasn't something that I had really thought about. I know it's different for everyone but it's definitely a positive that I hadn't considered.

I am very excited but still trying not to work it up too much in my mind since I am worried about possible pain, etc.

Thanks again. Definitely feeling better about my trip now.

I am planning my first flight since onset of RSD 3 yrs ago plus SCS implant. How do you get in contact with TSA? I am scared of being mishandle as described above -Thank you -Fondly-carol

I travel all the time, sometimes I have really bad days during the trip, and sometimes it goes without one problem. Some things that I try to do is make sure I have enough meds for emergencies, because once the pain gets out of hand it is hard to enjoy anything.

One thing you might check on is a power chair for both of you. This will take a lot of the stress level down just knowing you dont have to walk everywhere, and Disney will accommodate you on the rides you might want to go on.

Above all try to have as much fun as you can because those memories really help out after your back home. Glad your your going to get out and see some sights! :winky:

Just wanted to follow up and thank you so much for advice. i am planning on flying for the first time since onset of RSD 3 yrs. ago ,and called TSA office at our airport. The lady was EXTREMELY kind and helpful-told me to contact her about a week before flight and she would personally aide me or assign someone to help me . Thank you for this information! Fondly-Carol

Travel
 

Here is how I manage travel - including a Disney World trip. I always allow an extra day for rest; I start days late in the morning, I plan for an afternoon nap or rest. I advise you to keep travel plans, but schedule plenty of rest time. Sleep Late, Nap Lots ..... You'll Be Glad You Did!