Chronic Fatigue Syndrome

[AliceAndJohn]

Hi Guys,

My husband and I are looking at booking our next trip to WDW in the late spring/summer of 2016 and I'm concerned about how to cope with my CFS. Last time we went (Winter 2014) we stayed in a ground floor room at Pop Century which was great but I struggled with all the walking around the parks.

I don't feel that I need a scooter or wheelchair because we take regular breaks and I know my limits but standing in lines for sometimes an hour or more really took its toll.

Can I apply for the DAS? Should I apply for the DAS? Is there anyone else who has CFS who has any tips for me?

Thanks

 

[lanejudy]

Information about the DAS is available in the WDW - Disability Access Service thread pinned near the top of this forum.

Disney's recommended accommodation for mobility/stamina-related issues is to recommend use of a mobility device. There are no places to sit in line and a mobility device can provide that for you. While I recognize your wish to remain under your own power, maybe if you look at an ECV as a tool (much like glasses to help you see) it might be more acceptable to you.

Enjoy your vacation!

 

[gap2368]

like judy said disney will tell you to rent a wheel chair or a ECV I know most do not want to rent one but with a DAS card you still do a fair amount of walking ( some rides just the line is a half mile long one way) also there really is not that many places to site that is in the shade or in side so you will be standing or walking around to find a somewhere to sit. I would rent something and take a few breaks ( I have found that I can go into first aid when my medical problem is stating to act up and lye down for 45 minutes to an hour) maybe a nice long lunch even QS in side some where, do a show in the het of the day or try and schedule fast pass for the hotter times of the day that way you have something to do. you can also park hop to another park I find the buss to be very cold and it gives you a nice 10 or so minutes and it is normally now crowded.

but i think and wheel chair or the things that roll with a sit on it would help you the most you could push it and when you need to take a break you could sit and have your husband push you. you will find a lot of people doing this at disney there are a number of people whom do not need a mobility device in there every day life but do at disney

 

[Bete]

My cousin has the same condition and we've travelled together to Disney World. In her case a scooter really made a good difference. The way she looked at the rental cost was she was getting more park hours in and feeling decent and hence increased the value of her park ticket by having more time in the park.

We never even thought of asking for a DAS. She has other issues, too, but the scooter really made a big difference for her. We really accomplished more than I thought we would do.

You can always try for a DAS and see what happens if this is what you really want to do.

 

[ammag]

I have it too! I managed 90% of our first trip on my own! our second three day trip I made it one day unassisted and now I am going to be scooting wiht the best of em. I believe if you find you need the help they will deliver to you on short notice, and even at the parks. Double check that! But definitely think of it as a tool, like someone said, probably the wise person who also said it to me!

I know it's different, and maybe hard to do, I am right there! But IF you struggle it's not worth going without, you deserve the best vacation possible!!! Also make sure to talk to your doctor(s) beforehand and see if there is anything they can do to give you extra support. New med, etc.

I am not much into alternative therapies, as none have worked with me, but I have a friend who swears by Bowen which is some kind of muscle manipulation?!? And acupuncture. If you have the availability maybe look into that.

If you want to talk message me!!!!!

 

[Goofy14sure]

It's your vacation! You can move slow and take a lot of breaks, but with the use of a tool, you can keep up with your family, take breaks
When you want too ( not when you have too), always have a nice place to sit without searching for a bench!

Rent an ecv from an offsite vender and use it around the resort and in the parks, go check out Disney Springs and enjoy your vacation!

Have a Great Time!

 

[mamabunny]

Hi Guys,

My husband and I are looking at booking our next trip to WDW in the late spring/summer of 2016 and I'm concerned about how to cope with my CFS. Last time we went (Winter 2014) we stayed in a ground floor room at Pop Century which was great but I struggled with all the walking around the parks.

I don't feel that I need a scooter or wheelchair because we take regular breaks and I know my limits but standing in lines for sometimes an hour or more really took its toll.

Can I apply for the DAS? Should I apply for the DAS? Is there anyone else who has CFS who has any tips for me?

Thanks

You have options - all kinds of options - at WDW.

As others here have said, you can try to get the DAS, but will most likely be advised to use a wheelchair or ECV as appropriate to help with your walking/standing issues.

You can rent - at each park, from Disney - an ECV for $50/day. You can't take it back to the resort, or to Downtown Disney/Disney Springs with you. But, if you have a ParkHopper, you can "hop" your rental to another park.

You can rent from offsite (non-Disney) vendors at a much reduced rate. They will deliver/pick up the ECV from the resort, and all you do (besides drive it around) is plug it in every night while you sleep to charge it. If there is not enough space in your room, you can ask for the table and chairs to be removed. Bring along a power strip.

You can also rent a wheelchair while in Orlando - but unless you are used to pushing yourself, you will literally tire yourself more trying to push the wheelchair. With CFS, you really need a scooter or ECV. You could have your hubby push you - if you do, be sure to bring a pair of bike gloves for him, so he doesn't blister his hands.

You can also rent or buy a Rollator. (Search Google for pictures/descriptions). The advantage to a rollator is you always have a seat with you. The disadvantage is you have to push it, also probably not advised for someone with CFS.

I don't blindly advocate for ECV use - I fully believe that it benefits some folks greatly, while others may have conditions better suited to other mobility solutions. But in your case, I would rent an ECV. It is the solution that will take the least toll physical toll on you. If you find it too stressful to drive it on/off the bus, your husband can do that for you.

Rent the ECV. Use it as it is intended - as a tool to allow you to do the things you want to do. Don't worry about what other people might think; you will never see those people again. I promise. You have a better chance of hitting the lottery AND getting struck by lightning in the same day than you do of seeing anyone from WDW ever again.

And have a Magical time!

 

[ammag]

I have a friend who has a cane wiht a seat, perhaps that might work was well? I've seen the ones you can lean on, on this little triangle seat at the top, and a friend used one that unfolds to a leather or "leather" seat between the two sides. Got her through Denver comic con for three days.

 

[LilyWDW]

I also have CFS. In my opinion a DAS is not needed and will not be given. The fatigue can be solved by getting an ECV or wheelchair and that will be Disney's suggestion for stamina issues.

 

[happymommy]

I would suggest maybe getting a wheelchair at the parks.
My DD has Ehlers-Danlos Syndrome, and first time ever last March, we did the wheelchair rental in the parks. It was too much for her joints after the first half day (she is newly diagnosed). The wheelchair was easy to push, and it made her trip not only bearable, but amazing. She could rest her legs and enjoy herself. She was given a DAS, so we could rest while waiting for the time for the ride; they would definitely give one to you if you ask. I would also, though, get a wheelchair, even if it's at the parks. It will help so much!

 

[OurBigTrip]

I would suggest maybe getting a wheelchair at the parks.
My DD has Ehlers-Danlos Syndrome, and first time ever last March, we did the wheelchair rental in the parks. It was too much for her joints after the first half day (she is newly diagnosed). The wheelchair was easy to push, and it made her trip not only bearable, but amazing. She could rest her legs and enjoy herself. She was given a DAS, so we could rest while waiting for the time for the ride; they would definitely give one to you if you ask. I would also, though, get a wheelchair, even if it's at the parks. It will help so much!

I wouldn't say the OP would "definitely" be given a DAS - none of us knows, based on what is written. If the OP's issues are only fatigue/mobility, then there would be no reason for a DAS to be issued. A CM might still issue one, but certainly not "definitely".

 

[happymommy]

I think the fatigue is a real reason to get one. You can rest rather than standing in line, which helps my DD immensely. We also use the wheelchair in lines to let her rest as much as possible.
To the OP: you'll decide whether or not you want to ask for one.

 

[gap2368]

I think the fatigue is a real reason to get one. You can rest rather than standing in line, which helps my DD immensely. We also use the wheelchair in lines to let her rest as much as possible.
To the OP: you'll decide whether or not you want to ask for one.

there really is no need for a DAS as it dose not do any thing that a wheel chair can do. for the most part the CM will not give one out for this resin you just got lucky that day. I would not plan on it happing again.

 

[OurBigTrip]

I think the fatigue is a real reason to get one. You can rest rather than standing in line, which helps my DD immensely. We also use the wheelchair in lines to let her rest as much as possible.
To the OP: you'll decide whether or not you want to ask for one.

The standard Disney answer for fatigue is to rent a wheelchair or ECV. If fatigue is the issue, there is no standing in line, so no DAS would be necessary.

 

[seashoreCM]

One disadvantage of a Rollator or cane seat -- you cannot move up a few feet in line every few seconds without standing up each time.

 

[tobikaye]

One disadvantage of a Rollator or cane seat -- you cannot move up a few feet in line every few seconds without standing up each time.

With a rollator, it depends on the kind you have. I have seen some that can roll while being sat in. My sister and mom both have the kind that do not. My sister just raises up a small amount so that there is not so much pressure on the sit and then she can still roll without having to fully get up in slow moving areas.

 

[madameM]

I have a friend who has a cane wiht a seat, perhaps that might work was well? I've seen the ones you can lean on, on this little triangle seat at the top, and a friend used one that unfolds to a leather or "leather" seat between the two sides. Got her through Denver comic con for three days.

This is what I've always used in the past. They are great for minor mobility issues. I used mine mostly while waiting in lines. I got so many compliments on it, I should have bought 1,000 of them and sold them!

Yes, I know Disney would never allow that, but they could make a lot of $$$ by designing one with a Disney theme and sell them in the parks.

This trip next June, I'm definitely getting an ecv . My back, neck and legs hurt so much worse now.

 

[chainkid]

I have fluctuating issues so sometimes I need an ECV and others I'm fine with out it. I have enjoyed the parks more with ECV's as I have energy left at the end of the day to stay out at night. When on my own I'm done early and rarely venture out at night from sheer exhaustion. I would never feel embarrassed to use one and certainly don't feel getting a DAS would really help that much. They are fun to use and you can park them and get in a little walking when you feel like it. I never go in a special line as covering the long distances gives me energy to wait in lines

 

[ammag]

Sent times if feel a little bad that I need an ECV on yin trip, but then I go to target or somehitng and wish I had it. I am actually looking into buying one in the next year or two because the rest of my life can't be spent suffering! Over it!

 

[tinkerpea]

I would suggest maybe getting a wheelchair at the parks.
My DD has Ehlers-Danlos Syndrome, and first time ever last March, we did the wheelchair rental in the parks. It was too much for her joints after the first half day (she is newly diagnosed). The wheelchair was easy to push, and it made her trip not only bearable, but amazing. She could rest her legs and enjoy herself. She was given a DAS, so we could rest while waiting for the time for the ride; they would definitely give one to you if you ask. I would also, though, get a wheelchair, even if it's at the parks. It will help so much!

You'd really lucky that you managed to get a DAS.
Disney do not issue DAS for any mobility related disability,or fatigue unless there is a accommodation needed that a wheelchair or ecv does not provide,
Even after having chemo and going with a picc line. I was told unless there was another reason that a mobility aid would not solve then I would not need the DAS.
I went on without it,and only when the heat and severe sickness ( side effect from meds) got bad did I get the DAS because a accommodation not met by a mobility aid was needed.
I definitely would not want somebody to get their hopes up that they would get a DAS for this condition.