What is your touring plan with POTS or similar like chronic fatigue, fibro, etc.?

[cwnhokie]

My 14 year old son has POTS. His biggest concern is fatigue and pain. We plan to take a wheelchair and try to get him to use it. In the past we have always gone to the parks early when it is cooler and less crowded, but that was before POTS. Mornings are tough for him but cooler would still be better. We are going the first week in May. I'm afraid if we leave for a mid day break he won't want to come back. Right now we are planning to do parks two days, then two days off, then two days again and one day off before heading home. Not sure if he can do two days in a row but our older son is arriving the third day so that is why I have two days in a row right now. I know we will probably just have to adjust as we go, but for the first three days we will have the dining plan so I've made some ADRs. Interested to see what has worked for others.

 

[Mrsjvb]

we travel off season, do all TS meals , book our FP+ for the must do rides and take a break about mid way through to just do the report amenities.

 

[LilyWDW]

I don't know where your son's fatigue levels would fall compared to mine (Chronic Fatigue), but here are some things I do.

First, I do not do full days in the parks. Either I will do rope drop and then leave late afternoon-ish or, if I want to be there late, I don't start my day until around lunch time. So if I want to see Illuminations for an example, I won't get to Epcot until 1 or so. I also will not do an early morning after a later night if at all possible (and if I have to, the early morning day will be a SHORT day).

Second, I pretty much always have a TS meal booked for lunch or dinner depending on my plans. However, even when I eat QS, I take my time. I will not rush to eat. I get my food and eat slowly so I have time to decompress and rest. I mean, I won't just sit at a table with no food or drink, but I also won't be hurried.

Third, I make sure to pepper my trip with off days or super easy/short days. Normally I travel during Food and Wine, so I count visits to Epcot in that as those days I go slow around World Showcase, trying different foods, and I sit down quite often. It's not as tiring as other park days so for me it is a "down" day (plus I don't start those days until about 11AM and often will finish early evening so they are shorter).

Forth, I give myself permission to say "I am done. I need to rest. This will be here another time."

Even with doing this, I often need a couple days after my trip to get over the fatigue.

 

[MaryLovesPoohBear]

I have similar fatigue problems. And the biggest change for me is, like LilyWDW, I give myself permission to slow down. To take it easy. To rest.

I also use a scooter. I have to remember to use it. I will park it and walk around some, but I try to keep it at "some" rather then walking around a bunch. I also have planned down time. It might be at the resort or at a meal or just at a show. In fact, I've been known to nap during shows.

 

[CatNipRules]

I have Fibro. We go in September. I use an ECV. I don't push myself anymore. I will take stops in the shade and relax. I let my son do a few rides without me. I'll sit in one of the gift shops to decompress.

Take advantage of Fastpasses. They will be your friend. I try to drink lots and lots of water. If I drink soda or anything super sugary, it seems to sap my energy quicker and it makes me sore.

Do TS meals. Take advantage of the air conditioning. This will be his friend. If he feels like he needs a break do some of the shows. We take it slow and steady.

There were lots of times on our last trip there that I couldn't do a full day in the park. The exhaustion and pain got to be too much. So, we went back to the hotel and I laid in the bed for a few hours. Then, we went to Downtown Disney. I give myself permission to say that's enough. I need a break.

 

[mamabunny]

All of the above suggestions are great; the only thing I can think to add is that selecting the right Resort might help. A quieter, smaller resort (or the Cabins, which are wonderfully restful) might be good; the atmosphere will be more conducive to the kind of restorative rest he needs.

Mid-day breaks at the Resort are important, as is simple planning (space rides with attractions and meals to keep a certain level of activity). If you want to entice him back to the Parks, maybe plan on a Fireworks Dessert Party (less stressful and crowded than standing in crowds, or trying to see from the wheelchair) or some other activity that he will really look forward to.

It's OK to be in pain at WDW. A lot of folks think that just because you are there, somehow the pain magically goes away... it does for a few very lucky folks, but for the rest of us, we have to deal with it as best we can. My wish, and hope, and prayer for you is that your dear son has the very best trip possible.

 

[cwnhokie]

Thank you! This was his idea. He has been sick for 3 years and we haven't' been able to go. He's been home schooled for two years. He's started to make some progress in the last six months and wants to try to go back to public school for high school next year so we wanted to get the trip in before that. I told him we could go anywhere and he picked Disney World. We had lots of Disney rewards money saved up so off we go! I usually like to have a plan for Disney but this is throwing me since we never know from one day to the next how he will be.

We are staying at Port Orleans French Quarter for 3 nights then moving to Bonnet Creek. I went back and forth between POFQ and the cabins but finally decided it would be easier to get around at POFQ.

 

[LilyWDW]

We are staying at Port Orleans French Quarter for 3 nights then moving to Bonnet Creek. I went back and forth between POFQ and the cabins but finally decided it would be easier to get around at POFQ.

POFQ is my resort of choice honestly (though I will admit that I have never stayed in the cabins). It's a small resort and very quiet as long as you don't overlook the pool.

 

[marcyleecorgan]

My mom has a checklist of "things wrong with her", fibro included. We tried to rent her an ECV but her coordination is so bad she can't drive one. And she refused the wheelchair because she didn't like that we would have to spend time parking it AND finding it again.

We tried having her come to the parks for 3 days out of our 7... it was pretty much a disaster... she was wiped out by the time she got through the gates. Driving to the parking lot from Bonnet Creek, waiting at TTC, walking from the station to security, security to Guest Services, Guest Services to Main Street.... yeah.... that was enough for her. She watched the parade but really couldn't do much after that! ARGH

Chatting with her, I mentioned next time at Disney we'd be getting that wheelchair... sadly she was like, "No, I don't want to do Disney again. When you visit, you need to do something else in Florida." *facepalm* If she can't manage Disney, she isn't going to manage our pace anywhere else... we're up and running from the moment we're out the door until we crash at midnight, then we do it all again!

 

[cwnhokie]

That's how we used to do Disney but this time is going to have to be different, that's what I'm trying to wrap my head around.

 

[DisneyMim]

I have fibromyalgia and visit Disney often. We have been going forever so I don't feel that I have to do everthing every time. Difference is I am an adult but I can see that a child would really be looking forward to rides. We take it very easy. We are not and have never been rope drop people. Mornings are my worse time and it takes me awhile to get going. We are DVC members and typically stay in 2 bedroom villas so we eat breakfast in our villa. We also have aps so we can park hop or just leave a park if I am not feeling well. I say this because I realize they for some people this would not work. If you have limited time/tickets you won't want to leave a park. We always do a quick service lunch and I do really take my time eating and sitting. We always do a table service dinner and this helps tremendously as I use this time to get off my feet and relax. I don't need to use a wheelchair at this time so I just walk and take breaks when I need to. I think the most important thing to remember is to just go at his pace. Rest when he needs to. Go see a movie, the one in France is one of favorites, it has seats. Beware of China and Canada. No seats. Also things like the nemo show, etc. I hope you have a wonderful magical vacation. I wish your son no pain, or at least less pain.

Enjoy The Magic!!

 

[cwnhokie]

we only have 4 day tickets this time and no park hopper option, but I figure we can always add to it if we need to. I talked it over with him today and he said going later in the day and staying later he thinks would be better for him. So i moved everything to the afternoon. I figure we can either wait for him to get moving or one of us can take the 9 year old early and come back for a break and get him.

 

[DisneyMim]

Yes I think he has a great idea. I Know exactly what he means about going later in the day. I find I am much better later in the day and really enjoy the nights. Do whatever works for you ur family. Stop and smell the roses. I think so many people are in a rush to get to the rides that they miss so much. By having to slow down I have found so many little overlooked things. Again, I wish you all a wonderful vacation and no pain for your son.

 

[cwnhokie]

We've always been a stop and smell the roses family, I think that's why we love Disney so much. So many little things to enjoy, my kids are not big coaster riders, we all enjoy the experience. I just don't want to short the little guy since he hasn't had the experiences his brothers have had. It will all work out great I'm sure.

 

[mamabunny]

We have stayed at both POFQ and the Cabins - and we love both! - but I think that POFQ might be a good choice for your family.

The boats to and from Disney Springs are a wonderful, relaxed way to travel, and at the end of your day at the Parks, if he is still up for a bit of an adventure, you can go to Disney Springs, and then boat home to POFQ from there!

I know you are worried about this trip, but if you can let him lead the way, he may be able to have a wonderful trip!

 

[gap2368]

We've always been a stop and smell the roses family, I think that's why we love Disney so much. So many little things to enjoy, my kids are not big coaster riders, we all enjoy the experience. I just don't want to short the little guy since he hasn't had the experiences his brothers have had. It will all work out great I'm sure.

You have been given great advice. But you said that you do not want to short the little guy, Have you thought about having an evening/ a morning where you take your younger son and go do what he wants at his past. It can be so hard to be the sibling of someone with a disability, especially if there is a lot of time spent in the hospital and DR offices.

I hope you have a great time

 

[Daisybell911]

I have sarcoidosis so I deal with a lot of pain and swelling. I go slow, and do my favorite things first so if I do tucker out, I'm not as upset. We are doing a lot of character meals so I can rest, recharge and see lots of characters without waisting time. I can get around fine until my body decides to freak out sometime during the second day so I got a scooter. I decorate it so it's fun and doesn't seem so "medical".

 

[Rera2528]

It sounds like your son has a terrific grasp of what his body can and cannot handle, and I give him a lot of credit for that! I went to Disney twice while in treatment for Lyme Disease, and I found that I pushed myself too hard while there. I thought I was doing well, and when I came home, I crashed for days. Having those planned down days sounds very smart, because you are setting yourselves up mentally that there are forced breaks. Looking back, that would have been the way to go.

I second planning a night that is set aside for the youngest. It may relieve any pressure your son with POTS may feel to keep going for his younger brother if he knows that the youngest will have a special experience.

Many congratulations that he is regaining some strength and stamina!

 

[Liv Riley]

I did all my favorite things first. A lot of hidden Mickey hunting, a lot of indoors stuff, and took it slow. My younger brother (17) was a TROOPER and pushed my wheelchair for me when I got tired or cranky and threatened to run people over when they stopped in front of me... It helps me feel less faint-y to have one of those cooling neck bandanas. You can go to a sports store, too, and buy some cooling mat material and cut and sew it into a tube; add velcro on one end so it can seal but you can get it wet and stuff it with ice at your resort and it'll melt basically all day.

 

[wendow]

My 16yo dd also has POTS (as a symptom of Lyme disease). She has been sick for years but the last two years have been pretty intense (bedridden at times). We went to WDW this past September. We so desperately needed that trip after the last two years. She was not able to keep up at the pace she could in the past but we rented a WC, took lots of breaks, made time for naps, made sure to hit the pools, kept her well nourished and hydrated...and it was still such a magical trip. It took a bit for my dd to be willing to use a WC but she very quickly realized it was not just for her, but for us all, so we could have the best trip we could have.

My dd got a diagnosis of Lyme this past Dec and began treatment. Her POTS is much better, and other symptoms are improving also. If we went in 2017, she would probably still need a WC but I am hopeful that when we go in 2018, she won't need it at all (or at least not everyday).

Hope you have a great trip!