Doing Disney with chronic widespread pain

[laurainsem]

I understand it's hard. I too have body aches frequently along with stomach issues lately and worry about our trip and not feeling well. We have two months so I am preparing myself by taking long power walks a few times weekly and just building up each time. I also make sure I have plenty of Advil or other medication I may need. Also eating healthy sometimes helps how you feel. To keep energy levels up when you are at the park make sure to eat something good and healthy if possible say a chicken salad, etc. and eat a little more often smaller meals or small snacks. if you eat too much at once or badly it will make you even more sluggish. Stay hydrated and go on rides with ac and short lines just to get a break. Also go back to,resort to lie down and put your feet up for an hour or two so you will feel more refreshed. I find as long as I do these things and eat healthy to keep energy levels up I am fine for the whole week.

That is all terrific advice, thanks Tami. I was thinking, now that I got the boot off last week (broke my foot in two places) I would start taking the dog for daily walks again, slowly increasing the distance each time. I think that will help me immensely, whether I use the ECV or not. I was still dealing with chronic pain during my last trip in '09 but I was in better shape and didn't have as many problems, though I still took downtime each afternoon. For that reason it's essential for this trip (and life in general) that I get stronger if I can.

 

[tami82]

That is all terrific advice, thanks Tami. I was thinking, now that I got the boot off last week (broke my foot in two places) I would start taking the dog for daily walks again, slowly increasing the distance each time. I think that will help me immensely, whether I use the ECV or not. I was still dealing with chronic pain during my last trip in '09 but I was in better shape and didn't have as many problems, though I still took downtime each afternoon. For that reason it's essential for this trip (and life in general) that I get stronger if I can.

I understand, I too looked back to 2009 the first trip with my kids and hope I can have that same energy that I did then. I'm staying at my dream resort and also my older daughter will be joining us so I have to stay healthy these next two months. Except now I have the stomach issues (possible IBS from my symptoms) which I didn't then so in have to watch what i eat. Yes i think the walking would be a good thing for you. I too have to start that faithfully this week so that means getting up early at 6:00 to walk around the football field so I don't have to deal with bad heat later in the day.

 

[laurainsem]

I understand, I too looked back to 2009 the first trip with my kids and hope I can have that same energy that I did then. I'm staying at my dream resort and also my older daughter will be joining us so I have to stay healthy these next two months. Except now I have the stomach issues (possible IBS from my symptoms) which I didn't then so in have to watch what i eat. Yes i think the walking would be a good thing for you. I too have to start that faithfully this week so that means getting up early at 6:00 to walk around the football field so I don't have to deal with bad heat later in the day.

Ooh, the Poly! Have a great time, I would love to stay at one of the deluxe resorts someday. I have stomach issues as well so have to be careful what I eat too. Hopefully my stomach will cooperate while on vacation so I can enjoy myself a little bit. I hope yours holds up too!

 

[cuddles]

I have developed arthritis in my back, legs and feet and our upcoming trip has me stressed out because I can no longer walk more than a few blocks or stand in lines for a long time. My son says to rent a scooter so I may do that, otherwise I will be so miserable trying to get around. To look at me, you can't tell I have an issue and will just think I am just overweight and that's why I can't walk normally and i don't want other guests thinking that is why I need a scooter. Oh well my comfort is more important than what they think, right? Trust me I would rather be able to walk! Now my question is to those who have used a scooter and rented it outside of the parks, why wouldn't you just rent one in the parks? It seems easier than lugging one in your car or shuttle bus....unless you can't walk at all, then I understand.

 

[gap2368]

I have developed arthritis in my back, legs and feet and our upcoming trip has me stressed out because I can no longer walk more than a few blocks or stand in lines for a long time. My son says to rent a scooter so I may do that, otherwise I will be so miserable trying to get around. To look at me, you can't tell I have an issue and will just think I am just overweight and that's why I can't walk normally and i don't want other guests thinking that is why I need a scooter. Oh well my comfort is more important than what they think, right? Trust me I would rather be able to walk! Now my question is to those who have used a scooter and rented it outside of the parks, why wouldn't you just rent one in the parks? It seems easier than lugging one in your car or shuttle bus....unless you can't walk at all, then I understand.

I have never rented a scooter but they do run out of them at the parks, it is cheeper to rent off sit, and some of the hotels there is a lot of walking.

 

[mamabunny]

I have developed arthritis in my back, legs and feet and our upcoming trip has me stressed out because I can no longer walk more than a few blocks or stand in lines for a long time. My son says to rent a scooter so I may do that, otherwise I will be so miserable trying to get around. To look at me, you can't tell I have an issue and will just think I am just overweight and that's why I can't walk normally and i don't want other guests thinking that is why I need a scooter. Oh well my comfort is more important than what they think, right? Trust me I would rather be able to walk! Now my question is to those who have used a scooter and rented it outside of the parks, why wouldn't you just rent one in the parks? It seems easier than lugging one in your car or shuttle bus....unless you can't walk at all, then I understand.

Prior to owning my own personal ECV(s), I always rented from outside vendors. Here's a quick rundown of why:

- The transportation system at WDW is great for folks on wheels. Nearly every single boat, and all of the buses and monorails are ECV/wheels ready. Yes, you board first, and you get off last, so it can "slow" things down a bit, but once you are experienced, you will be amazed at how quickly you can drive on/off the bus and get on with your fun!

- Renting from outside allows you to use the ECV at your Resort hotel. Some of the resorts can have quite a hike from your room to a bus stop, or to the laundry, or to dining options, etc. Every WDW Resort hotel is very wheels friendly as well as the Parks.

- Disney Springs (formerly Downtown Disney) is much larger than it used to be, and even with the new centralized bus stop and the boats running between the two far ends, you can still do a BUNCH of walking there. We absolutely love to go down there for shopping and dining, and so and ECV is a must for me there.

- Sometimes (not always) the parks run out of the rentals. During the course of the day, the inventory at any of the parks can fluctuate. You cannot reserve or hold an ECV at the Parks (or Disney Springs). You can "hop" your rental between them, but if you give up your ECV at (for example) the Magic Kingdom, and then go over to Epcot, and they are all rented out... you will have no choice but to wait until someone returns one as they are exiting the Park.

- Last, and (for me) not least is the maneuverability factor of the Park rental units. Those are larger, very heavy duty units, but as a result, they are far more difficult to maneuver around in tighter places. Some of the bathrooms are very difficult, if not impossible with those.

Please remember that a huge majority of the people you will see using personal mobility devices and aids at WDW have a "hidden disability". Anyone who judges them does so from a place of fear and ignorance. Using an ECV to maximize your vacation at WDW is no different than using a pair of glasses to see, or a calculator to do math. It is a tool to accomplish a goal or task. Nothing more.

 

[Selket]

I have developed arthritis in my back, legs and feet and our upcoming trip has me stressed out because I can no longer walk more than a few blocks or stand in lines for a long time. My son says to rent a scooter so I may do that, otherwise I will be so miserable trying to get around.

I have severe arthritis in both knees and both need replacing. I'm able to get by at the moment with doing shots in them and the surgeon would rather me be older to replace them (I'm early 50's - and it IS debatable whether it's better to wait or not wait but right now for the moment I'm ok with shots). Anyway...to look at me I seem just fine but what you said above is EXACTLY what happens to me. I can walk and stand but to do so constantly and all day is too much. Honestly I can barely walk down an incline anymore the way my knees are. I'm better on level ground but even then it's best for short distances. I'm fine shopping for example (I don't need a scooter at the grocery). I also had a bad bicycle accident last Fall and had a brain injury (that's a whole other story) - but the ECV gives some personal space and just the ability to stop where I want (out of the way of walkers) and take a break - make my own bench and sit on it so to speak - lol! I park the scooter and get out for rides (if I have a FP which I usually do for what I ride or it is a short wait) and I get out when I shop in the stores or eat. It's easy to park the ECV - with the strollers or in out of the way places.

Rent a scooter off site. The ones at WDW are HUGE compared to the off-site ones. Try a rental and if you hate it then you can simply not use it and send it back (and you won't be out all that much money compared to the cost of your entire vacation). You can always have a family member drive it on and off the bus for you if that's a concern. For your situation I wouldn't think twice about renting a scooter.

 

[Mommee]

I have the hypermobile type of Ehlers Danlos Syndrome. There is a thread on the disabilities community board if you're interested. I can't use an ECV (hands and shoulders are severely affected) so my husband pushes me in a transport chair. We show up at park open (but not for rope drop; those crowds are dangerous to me!) and tour for the morning. We have lunch in the park and typically head out after that. If I'm having a good day we might stay longer. I use a frogg togg cooling towel to keep from overheating.
There's several rides I don't do-thunder mountain, space mountain, dinosaur, expedition everest, rockinroller coaster, tower of terror, the spinny one at animal kingdom, etc. They cause too much pain. I have a lot more fun if I just people watch while the rest of the family does these. I LOVE the mine ride, though. The seat kind of cradles me and it sways instead of jerks Afternoons include a soak in the hot tub to reduce muscle spasms, and if I haven't slept well I'll take a nap while hubby takes the kids to the pool. If we want to see a parade or fireworks, we don't try to stay all day; we head to the park after dinner. Every couple of days we have a non-park day. I wear both of my hand braces, and bring my shoulder sling into the park in case I need one. Typically my hips give me the most trouble from sitting in the wheelchair so much.

 

[Bete]

Do the parks smart. Get a scooter. Don't back track. Plan accordingly. Get DAS. Use fastpass plus. Alternate rides with shows. The shows will allow you to rest some. Getting a bite to eat is a rest period, too. Meet and greets can be fun; you don't have to do rides all the time. You can stay on your scooter through the ride queues. You can sit in your scooter in the theaters. There is handicap viewing for parades and fireworks and scooters are okay in those areas, but you have to arrive early to secure a spot. I would avoid rides with deep entries like test track or boat rides. Rides that jerk you will not be your friend, either. Enjoy the live street acts. See the acts throughout World Showcase in Epcot.

See if your doctor has any recommendations. Maybe, you can be put on stronger meds while vacationing. Try the meds before you go to make sure you can function. Stay hydrated. Mornings are the best in the parks. Take advantage of extra magic early mornings. Don't overdo. Don't push yourself to the point of no return. You may find yourself spending more time at the resort if you overdo.

Taking a scooter on and off the buses is hard work. You need to make some maneuvers to get it parked on the bus. You might be better off letting someone else do it for you if you can handle the steps up and down the bus. Renting offsite for a scooter is cheaper and you will have it at the resort, too. Make sure you charge your battery completely each night. Take your charger in the park with you, in case, you need an emergency charge. Watch and monitor your battery meter to make sure you have enough power. Take the key when you are off the scooter except when a cast member needs to move it; because the ride enters and exits at different places. Don't park it in a congested area like a parade route. There is a manual override where a Disney cast member can move your scooter manually if the need is there to do so. Scooter parking can often be done with strollers.

You can practice at home free at the grocery stores with their scooters. It will give you an idea what it is like. The grocery scooters are harder to maneuver than the portable travel scooters. You need to decide if you want a three wheel scooter or four wheel scooter. The three wheel scooter allows you to take turns better, but they can tip over more easily. The four wheel scooter is considered more stable, but turns will be a little harder. You may want to go to a local zoo and use a scooter there for a day to make sure you like it and you are okay with it. Your hands need to control the scooter. Practicing at home will make the trip easier.

 

[KPeveler]

Another bendy here (EDS Hypermobility)!

Do not even try to walk the parks. It is not just the distance, but the fact you do it everyday for a week! I use a wheelchair in daily life now, but I started using it in the parks not long after my EDS diagnosis. There is no reason to push yourself. Get up to walk when you need to, to avoid stiffness. But for me, just walking enough to get from chair to attractions was plenty for me.

Make use of first aid - they have nice cool places to lay down. They can also give you ice packs if you need it.

Don't feel like you have to do everything or even most things. It is better to do 3 things a day and really enjoy them, than do 10 and be in horrible pain.