any problems for those with "invisible" issues?

[ammag]

Hello,

I have ME/CFIDS/ chronic fatigue syndrome, and fibromyalgia. (the first 3 are the same illness, but people use different labels unfortunately) However i am 35 and have two kids...and often do not look sick or like i am in pain. However, i am never not both..lol. I was functioning much better until the last 5 months or so, now I am getting worried about our october trip. I dont think i could possibly rent a wheelchair because we need two umbrellas or a double stroller.

I will rest and take all of my usual precautions, have already designed our itinerary around my issues and my kids' ages....any advice? anything special i should ask for when getting a GAC? I will be getting a parking placard for NY in time, hopefully. staying offsite, renting car.....7 days in parks with lots of breaks only 1-2 later nights. my main issues are fatigue, pain in joints and muscle spasams- difficulty with standing and stairs, etc. I am a little afraid of being treated poorly by someone thinking I am not really sick or dont need whatever help the GAC give. I guess I have to just ignore that if it happens.......so whats your advice?

 

[LilyWDW]

The issue is that the accommodation for those with stamina issues is a wheelchair or ECV. Even if they offered another accommodation at an attraction, that will not help in the parks, on the transportation, in character lines, ect. There are not spots in the lines of the attractions for sitting and resting. Some of the lines are VERY long walks.

 

[peemagg]

I have issues similar to yours and I use an ECV. It allows me to save my energy. If I tried to walk the parks, I would only be able to last about 10 minutes while walking. That is not my idea of fun. The ECV allows me to do more during the day.

 

[lanejudy]

Will someone be with you who can push the double stroller so you can use an ECV? That really will be your best "accommodation." There is a LOT of walking at WDW, I think most people walk between 6-10 miles in just one day. As a PP mentioned, Disney's response to stamina issues is to rent a wheelchair or ECV and you will definitely need that; you can ride it right into the lines and transfer to the ride vehicle. A GAC is only useful at rides/attractions - it does nothing for getting around the park, using transportation, at restaurants or resorts; you mention trouble with stairs and that can be accommodated with a GAC if necessary, but keep in mind that many alternate entrances end up with a much longer wait than the standard line. I recommend using a double stroller so both kids can be pushed by another adult, and you use an ECV. If you don't have someone else with you to push the stroller, I think you need to seriously consider whether this is the right vacation for your family at this time.

Good luck!

 

[LazyDaisy]

My husband is 30 and looks totally healthy and in the prime of his life. He finds it very painful to walk due to invisible neuromuscular issues. His knees especially bother him and by the end of a few hours (often less) of walking he is in severe pain. I am 29 and look totally healthy. I have heart issues that are nothing most of the time, but sometimes they make me very weak and short of breath, and if I don't find somewhere to sit down, and I mean immediately, I feel like I will pass out and sometimes do black out. (It's not dependent on exercise or heat or anything - they just come on for no reason.) We are both (!) considering getting scooters for this upcoming trip. We would both (!) look like total "fakers". Oh well.

 

[Kellykins1218]

If people think you are "fakers" then let em. You know what you need and that's all that matters. Why care what closed-minded people think? It's not like you'll see any of them after the trip anyway, right?

 

[mistysue]

My husband is 30 and looks totally healthy and in the prime of his life. He finds it very painful to walk due to invisible neuromuscular issues. His knees especially bother him and by the end of a few hours (often less) of walking he is in severe pain. I am 29 and look totally healthy. I have heart issues that are nothing most of the time, but sometimes they make me very weak and short of breath, and if I don't find somewhere to sit down, and I mean immediately, I feel like I will pass out and sometimes do black out. (It's not dependent on exercise or heat or anything - they just come on for no reason.) We are both (!) considering getting scooters for this upcoming trip. We would both (!) look like total "fakers". Oh well.

You could always go the route of sticking out your tongue at those you feel are glaring just to see how quickly you read about yourself on the boards...

Seriously though, OP- I would probably go with the ECV. Then I don't know if it would be a problem for you, but if not, you could even let one of the LO's ride on your knees sometimes when the stroller needs to park and the ECV can get through. Last time we went it seemed like DS was just tired enough to need to be held in lines but not tired enough to actually rest if we left.

 

[crashbb]

You could always go the route of sticking out your tongue at those you feel are glaring just to see how quickly you read about yourself on the boards...

Seriously though, OP- I would probably go with the ECV. Then I don't know if it would be a problem for you, but if not, you could even let one of the LO's ride on your knees sometimes when the stroller needs to park and the ECV can get through. Last time we went it seemed like DS was just tired enough to need to be held in lines but not tired enough to actually rest if we left.

Actually, allowing a child to ride on your lap when driving an ECV is not allowed at WDW since it is a safety concern.

 

[aubriee]

Seriously though, OP- I would probably go with the ECV. Then I don't know if it would be a problem for you, but if not, you could even let one of the LO's ride on your knees sometimes when the stroller needs to park and the ECV can get through. Last time we went it seemed like DS was just tired enough to need to be held in lines but not tired enough to actually rest if we left.

If you rent one from offsite, part of the rental agreement you say you've read and signed, states that no one will be allowed to ride with you on the ECV. If someone who works from the company happens to be in the park and sees you with a passenger, they can confiscate the ECV and you will not get a refund. Also if a WDW CM sees someone with a passenger they are supposed to remind you that it is not allowed on either one of their ECVs or for an offsite rental.

 

[SueM in MN]

As other pointed out, it's is not safe or allowed to have a passenger on an ECV.
Ihsve seen bad situations where a child knocked into the driver's hand and the ECV veered off into other people. I have also seen small children try to get off a moving ECV or fall off. So, there are very good reasons for the rule.

Besides what was mentioned by other posters, Guest Assistance Cards do nothing to shorten the distance walked.
You still have to get from the line entrance to the boarding area. This can sometimes be a very long distance. For example, that distance at Soarin' is over 1/4 mile long. And, once you have ridden, it's 1/4 mile again to get out.
There are some attractions that are wheelchair accessible, but not ECV accessible. For those, oth n ECV, you would have the option of walking or switching to a wheelchair.
The disABILITIES FAQs thread (near the top of this board or follow the link in my signature) has information about renting ECVs in post 2 and about GACs in post 6.
Page 2 of that thread has information about using an ECV and a list of attractions where everyone will stand for a while unless they have 'brought a seat with them,' in the form of a wheelchair, ECV or rollator (rolling walker with fold down seat).

These things - plus what other posters already mentioned - are why WDW's recommendation for people who are concerned about stamina or standing in lines use a wheelchair or ECV.

 

[>Ash<]

Hi Guys,

i have an invisble well, its invisible when i dont wear shorts. i have a prosthetic leg but walk very well, i occasionally am able to walk long distances in the cooler weather. on an evening at florida i walk more, im able to use my gac card when im walking

this may help you plan your trip OP. on your arrival head over to the town hall and just have a conversation with the CM just l;et them know of your porblems and your concerns, they will be able to allocate you the appropriate GAC card.

hope you have a good time, i too will be their in october. wearing my limegreen mickey head with my user name on hehe

 

[I Love Pluto]

I agree that an ECV is your only choice when you realize your symptoms. Joint pain & fatigue alone are enough to warrant an ECV.

Don't let people who stare offend you. They do look (I have caught them) but they are just "curious" as to "what's wrong with you". It's really an innocent curiosity rather than a put-down.

I was told after bowel and spinal surgeries that I was the healthiest looking sick person the surgeon had ever met. These were 2 different surgeons who never met each other. I took it more as a compliment.

I must look GOOD!!!

 

[ammag]

wow thanks for the great responses! Ive been looking at the ECvs but I dont think we could afford it..this trip is mostly free/gifts and unless DH gets a new job soon as we hope, I may have to just deal wiht it. somehow. ugh well I will make the best of it, maybe get some new meds? this board is so supportive, i appreciate it!

 

[tinkerpea]

I would go to guest relations when you arrive at the park,There ARE things they can do on a GAC for you just explain your situation the best you can!They give out different accomadations for different things I have some of the same issues as you and found the GAC to be very helpful on the last 6 trips i needed it.

I also have a child with ASD BUT i had the GAC way before he was diagnosed for my own problems so i know that they have a whole range of things they can do for different disabilities

 

[canopynut66]

I have MS and Lupus and have to use a ECV and do not like to use one but beats staying home. I rent from outside vemdor called walker mobility and they have it there when I arrive so I have to and from buses and rooms and allduring the trip and they pick itup when I leave. also I do not look ill but this all will get worse as times goes on. but for now EVC works for me to enjoy life and ignore ones who do not understand life can slap you in the face over night like mine did. was at disney had been there a week and walked all over and went to bed fine and the next morning could not get up two days later found out had MS. had been what I thought was healthy all my life. has been five years now and have came to see could be worse things.

 

[Piper]

I understand financial issues--the cost of my meds is astronomical! But going by what you are saying, your choice is to go and enjoy with an ECV or go and be miserable (and affect everyone else negatively.) You may want to try little economies now to save some extra. How much fun will it be if you have to cut your days really short!?!


Apple scooters had the least expensive ECVs the last time I rented one. They were safe and reliable.

 

[peemagg]

I agree with Piper! I believe that Apple charges about $150 for a week for the rental of a very nice scooter. It is the one that I use personally. It is the Pride Elite Traveler Plus scooter.

I have also used Apple on two different occasions and can't say anything but good things about them.

 

[cm8]

Hi Guys,

i have an invisble well, its invisible when i dont wear shorts. i have a prosthetic leg but walk very well, i occasionally am able to walk long distances in the cooler weather. on an evening at florida i walk more, im able to use my gac card when im walking

this may help you plan your trip OP. on your arrival head over to the town hall and just have a conversation with the CM just l;et them know of your porblems and your concerns, they will be able to allocate you the appropriate GAC card.

hope you have a good time, i too will be their in october. wearing my limegreen mickey head with my user name on hehe

Okay, seems you have already edited your post! I was just about to say something!

 

[ammag]

apple's prices are much better than I thought! Ive nevr had to use one before, now I am having anxiety. lol. thanks..will see how I am in another month or two and decide...

 

[peemagg]

apple's prices are much better than I thought! Ive nevr had to use one before, now I am having anxiety. lol. thanks..will see how I am in another month or two and decide...

Using a ECV is very easy to do, but will take concentration and awareness on your part. Not for operating the scooter, but to be watching out for those around you. Most people either don't see you or do see you and walk in front of you anyways. You will have to be on constant vigilance for others. You could practice using a scooter at your local Walmart or other store that has them. Those are bigger and bulkier than the ones you would rent.