Chronic fatigue alias sleeping beauty

[Carine]

Hello everyone,

I already post my question to a different board but I believe this is the best place I could get better tips and tricks. I’m planning to go WDW in 2 years or so and I need all you can tell me to save myself energy. I’m having chronic fatigue, so in a good day I have 3-4 hours energy.

I have signs before I get all Goofy , meaning a need a nap badly! Usaually I have 30-45 mins windows before the first signs and the Goofy behaviors (irritability, lost memories, strange fever, walking like if I am drunk, no concentration...)

So my previous question on the other board was if there was a resort better located so when I get the first signs, it’s time to hit the hotel. But apparently there is no such hotel with many transportation option that could offer me this relief. People suggest ECV, that is a good ideas . So less walking, more energy and more time in the parks.

Then someone suggest the first aids facility for a quick nap maybe. When I don’t wait the last minute to rest I need a 45-60 minutes solid nap. And then I should be good to go for an other 2-3 hours. But again it may vary! Are we aloud to put a blanket in the grass and rest? Or any suggestions any one?

We are planning a 10 day trip so I can take my time and not be burn out and have to sleep a straight 18 hours sleep every 3 days...

Hope to hear from you guys!

 

[lanejudy]

moving to the main disABILITIES Forum where this will catch more views and responses

 

[Carine]

moving to the main disABILITIES Forum where this will catch more views and responses

I’m new at this forum...so I’m assuming your the one who can change the post to the main disAbilities Forum right? Should I changed the title maybe? Thank you for your help!

 

[mamabunny]

Hello everyone,

I already post my question to a different board but I believe this is the best place I could get better tips and tricks. I’m planning to go WDW in 2 years or so and I need all you can tell me to save myself energy. I’m having chronic fatigue, so in a good day I have 3-4 hours energy.

I have signs before I get all Goofy , meaning a need a nap badly! Usaually I have 30-45 mins windows before the first signs and the Goofy behaviors (irritability, lost memories, strange fever, walking like if I am drunk, no concentration...)

So my previous question on the other board was if there was a resort better located so when I get the first signs, it’s time to hit the hotel. But apparently there is no such hotel with many transportation option that could offer me this relief. People suggest ECV, that is a good ideas . So less walking, more energy and more time in the parks.

Then someone suggest the first aids facility for a quick nap maybe. When I don’t wait the last minute to rest I need a 45-60 minutes solid nap. And then I should be good to go for an other 2-3 hours. But again it may vary! Are we aloud to put a blanket in the grass and rest? Or any suggestions any one?

We are planning a 10 day trip so I can take my time and not be burn out and have to sleep a straight 18 hours sleep every 3 days...

Hope to hear from you guys!

Welcome - I know you must be excited as you plan for your trip!

Certainly an ECV will be helpful; you have lots of time to "practice" using an ECV, and one of the ways folks around here recommend doing that is by using the "scooter carts" at stores like Wal-Mart, Target, Lowes, Home Depot, your local grocery store, etc. Even though the ECV you rent for use at WDW will most likely be smaller and much more nimble, by practicing driving in busy stores, you will begin to get used to conditions you may encounter at WDW. Given that your fatigue is so pronounced, you will most likely want to rent from an offsite vendor, and have it delivered to your WDW Resort hotel; many of the hotels have grounds that are rather large, so it will be very helpful to have the ECV at the hotel. You will park the scooter in your Resort room every night, and make sure you charge up the battery completely overnight before the next day!

Blankets on the grass raise a couple of issues: First, if it is rainy during your time there, you will have to have a waterproof to lay down, plus a blanket... that's a lot to carry around. Remember that you will have to go through bag check every time you enter one of the Parks, and may have to remove the entire contents of your bag for inspection if requested. Additionally, I believe that if you did spread out a blanket, you will probably have a Cast Member come by in fairly short order and ask you to move - and when you explain why you need to lay down, you will be directed to First Aid anyway.

As far as First Aid in the Parks goes, you are always welcome to stop by and work with them regarding your needs. You could even consider stopping every 2 or 3 hours, and then taking a shorter "time out" at First Aid. With Park Hopper tickets, you could plan your days so that you spend a few hours at one Park (say Magic Kingdom) then back to the hotel for a rest and maybe a light meal, on to another Park (for example, Hollywood Studios) for a few hours, back to your room for a while, and then finish the day at either a third park, or Disney Springs. Even with standard "one Park" tickets, if you act to rest and recharge *before* you become so fatigued, you may find that you can dramatically extend your stamina.

Where you stay is *very* subjective; much depends on your budget and personal preferences. In the "Moderate" category, I would suggest Port Orleans French Quarter or Port Orleans Riverside; they have a more relaxed vibe, and for a nice change of pace you can ride the boats to and from Disney Springs. For a Deluxe, any of the Monorail hotels might be a good choice; you have good access to MK, and
they are (relatively) short trips to/from the other theme Parks; Animal Kingdom is the furthest park away, and Disney Springs is a slightly longer trip as well. My personal favorite of the Monorail Resorts would be Poly; again, there is a slight more laid-back vibe, and it is quieter than Contemporary, where the public spaces can get a bit hectic and noisy for my taste at times.

For the most "central" location, I would look at the Epcot area Resorts; those offer the shortest travel times (overall) to the most locations on WDW property.

If you feel like you will be spending most of your theme park days at one Park (for example, you want to see the other 3, but intend to go most often to Magic Kingdom) then finding a room nearest to Magic Kingdom at Contemporary would be ideal. If you are going to be at Epcot or Hollywood Studios more, then you might be better served by Boardwalk, Swan/Dolphin, or Beach/Yacht. I would only suggest basing your Resort on a specific theme park location if you are very certain that park will be your priority.

In the next two years, you may have changes to your condition; remain flexible as you plan your trip.

 

[Carine]

Welcome - I know you must be excited as you plan for your trip!

Certainly an ECV will be helpful; you have lots of time to "practice" using an ECV, and one of the ways folks around here recommend doing that is by using the "scooter carts" at stores like Wal-Mart, Target, Lowes, Home Depot, your local grocery store, etc. Even though the ECV you rent for use at WDW will most likely be smaller and much more nimble, by practicing driving in busy stores, you will begin to get used to conditions you may encounter at WDW. Given that your fatigue is so pronounced, you will most likely want to rent from an offsite vendor, and have it delivered to your WDW Resort hotel; many of the hotels have grounds that are rather large, so it will be very helpful to have the ECV at the hotel. You will park the scooter in your Resort room every night, and make sure you charge up the battery completely overnight before the next day!

Blankets on the grass raise a couple of issues: First, if it is rainy during your time there, you will have to have a waterproof to lay down, plus a blanket... that's a lot to carry around. Remember that you will have to go through bag check every time you enter one of the Parks, and may have to remove the entire contents of your bag for inspection if requested. Additionally, I believe that if you did spread out a blanket, you will probably have a Cast Member come by in fairly short order and ask you to move - and when you explain why you need to lay down, you will be directed to First Aid anyway.

As far as First Aid in the Parks goes, you are always welcome to stop by and work with them regarding your needs. You could even consider stopping every 2 or 3 hours, and then taking a shorter "time out" at First Aid. With Park Hopper tickets, you could plan your days so that you spend a few hours at one Park (say Magic Kingdom) then back to the hotel for a rest and maybe a light meal, on to another Park (for example, Hollywood Studios) for a few hours, back to your room for a while, and then finish the day at either a third park, or Disney Springs. Even with standard "one Park" tickets, if you act to rest and recharge *before* you become so fatigued, you may find that you can dramatically extend your stamina.

Where you stay is *very* subjective; much depends on your budget and personal preferences. In the "Moderate" category, I would suggest Port Orleans French Quarter or Port Orleans Riverside; they have a more relaxed vibe, and for a nice change of pace you can ride the boats to and from Disney Springs. For a Deluxe, any of the Monorail hotels might be a good choice; you have good access to MK, and
they are (relatively) short trips to/from the other theme Parks; Animal Kingdom is the furthest park away, and Disney Springs is a slightly longer trip as well. My personal favorite of the Monorail Resorts would be Poly; again, there is a slight more laid-back vibe, and it is quieter than Contemporary, where the public spaces can get a bit hectic and noisy for my taste at times.

For the most "central" location, I would look at the Epcot area Resorts; those offer the shortest travel times (overall) to the most locations on WDW property.

If you feel like you will be spending most of your theme park days at one Park (for example, you want to see the other 3, but intend to go most often to Magic Kingdom) then finding a room nearest to Magic Kingdom at Contemporary would be ideal. If you are going to be at Epcot or Hollywood Studios more, then you might be better served by Boardwalk, Swan/Dolphin, or Beach/Yacht. I would only suggest basing your Resort on a specific theme park location if you are very certain that park will be your priority.

In the next two years, you may have changes to your condition; remain flexible as you plan your trip.

Thank you mamanbunny,

So love your name lol ! I no longer need a ECV to make my grocery, but I surely did have some practice already . And your right may be l’ll be even better with my fatigue in two years from now. Used to be even worst, slept 20 hours straight for 3 months. Since 2013, I’m a slow poke lol, but every years is getting better and better.

My concern was outside my routine what would happen, and more importantly what can make my dream come true. I had tears in my eyes when I found out about the First Aid that could help me or that I might be able to get a special card to not wait too much on rides (nothing have been promesses but a read that that it could be ask) At least now I know that it can happen and I’m excited to just put money aside! WDW create sleeping beauty for a reason lol.

Thank you again for all your tips mamanbunny!

 

[gap2368]

Thank you mamanbunny,

So love your name lol ! I no longer need a ECV to make my grocery, but I surely did have some practice already . And your right may be l’ll be even better with my fatigue in two years from now. Used to be even worst, slept 20 hours straight for 3 months. Since 2013, I’m a slow poke lol, but every years is getting better and better.

My concern was outside my routine what would happen, and more importantly what can make my dream come true. I had tears in my eyes when I found out about the First Aid that could help me or that I might be able to get a special card to not wait too much on rides (nothing have been promesses but a read that that it could be ask) At least now I know that it can happen and I’m excited to just put money aside! WDW create sleeping beauty for a reason lol.

Thank you again for all your tips mamanbunny!

There is no card where you do not have to wait for rides, there is a card that you do not have to wait inside the lines for rides, but you still wait the full time. SO if it is 12:00 and space has 60 minutes wait you will wait 50 minutes outside the line and then go back and go in the FP line. sometimes you get on faster but sometimes this takes longer to ride ( I have heard that they inflate ride times at the end of the night and other times they do this too.) Mobility and fatigue are two things that normally do not get issued this card. You are more than welcome to stop by Guse service and ask them about it, but be prepared to say what your needs are waiting in line and why it would help you to wait outside the line


I do think First Aid would be a big help to you as there is place to lie down and you could easily nape for 45-60 minutes in there.

With 10 days you should have a lot of time to get a lot done ( so this would be 8 park days if you did not go on travle days)

I would go to each park 2x and split up each park in half so one day at the MK do Tomorrowland and fantice land make your FP for the time you know is your best time and then back to the hotel (or first aid) for your rest. I would not park hop as that takes a lot of time and a lot of energy ( and if you find you need to you can add them letter, but if First aid as a good enough rest spot then I would do this and not your hotel)

It is ok not to see and do everything Most people can not do and see everything,

I have heard that doing a ride followed by a show really does help with fatigue

I know you are excited and I hope you get more energy is the time come closer for you to go it sounds like you have already made some progress

 

[Carine]

There is no card where you do not have to wait for rides, there is a card that you do not have to wait inside the lines for rides, but you still wait the full time. SO if it is 12:00 and space has 60 minutes wait you will wait 50 minutes outside the line and then go back and go in the FP line. sometimes you get on faster but sometimes this takes longer to ride ( I have heard that they inflate ride times at the end of the night and other times they do this too.) Mobility and fatigue are two things that normally do not get issued this card. You are more than welcome to stop by Guse service and ask them about it, but be prepared to say what your needs are waiting in line and why it would help you to wait outside the line


I do think First Aid would be a big help to you as there is place to lie down and you could easily nape for 45-60 minutes in there.

With 10 days you should have a lot of time to get a lot done ( so this would be 8 park days if you did not go on travle days)

I would go to each park 2x and split up each park in half so one day at the MK do Tomorrowland and fantice land make your FP for the time you know is your best time and then back to the hotel (or first aid) for your rest. I would not park hop as that takes a lot of time and a lot of energy ( and if you find you need to you can add them letter, but if First aid as a good enough rest spot then I would do this and not your hotel)

It is ok not to see and do everything Most people can not do and see everything,

I have heard that doing a ride followed by a show really does help with fatigue

I know you are excited and I hope you get more energy is the time come closer for you to go it sounds like you have already made some progress

Thanks gap2368, to clarify the « card » thing. That’s fine it’s still manageable. With the fast pass and I’m guessing we can wait on line seating on our ECV so I don’t tired too much by standing up. The rides that don’t offer me waiting on the ECV I just need to get a fast pass and returning at the good time. If I wait 15 mins-20 mins standing up I’ll be fine, but it’s the long wait that make me anxious, but hey ECV , fast pass + nap + slip day .... it will work! And like you said 10 days I surely have enough time to slip the day to rest and slip the park in 2 . And I know I won’t see every thing and believe me I don’t want that either...my brain will be to much overload.

 

[Betty Rohrer]

Thanks gap2368, to clarify the « card » thing. That’s fine it’s still manageable. With the fast pass and I’m guessing we can wait on line seating on our ECV so I don’t tired too much by standing up. The rides that don’t offer me waiting on the ECV I just need to get a fast pass and returning at the good time. If I wait 15 mins-20 mins standing up I’ll be fine, but it’s the long wait that make me anxious, but hey ECV , fast pass + nap + slip day .... it will work! And like you said 10 days I surely have enough time to slip the day to rest and slip the park in 2 . And I know I won’t see every thing and believe me I don’t want that either...my brain will be to much overload.

remember you will be able to take ECV in most lines all the way to the ride and your ECV will be where you exit waiting for you. there are a few rides where you have to transfer to a wheelchair which will bring to back to your ECV. at those rides the are wheelchairs there for you to use. you do not have to rent one in the park to ride these rides. there are very few rides that you cant use a wheelchair/ECV in line People Mover is one. if you have balance issues I would look at a folding cane that will fit in ECV basket to help you on and off rides esp the ones with moving ramp like Haunted Mansion as this helped me a lot last trip

 

[gap2368]

Also I would go and stop at guest service and let them know you have a litmmited number of hours in the park and ask them what whould be best for you, so that you can enjoy as much as you can ( I really would not even say I heard there was a specle pass or anything like this) If you find you miss a FP becuse you are too tierd ( not becuse you were doing something else) Io wulsdomeone know often times things can happen if you let someone know ( like one of the nures at Fisrt aid, Guest relstion CM some one at the ride you had a FP for ( I miss FP all the time due to my medical problems and Iowuld say 75% of the time if I say something they wil do something so that I can ride when I am able too ( I have seen and know if other people that do this too )

Thanks gap2368, to clarify the « card » thing. That’s fine it’s still manageable. With the fast pass and I’m guessing we can wait on line seating on our ECV so I don’t tired too much by standing up. The rides that don’t offer me waiting on the ECV I just need to get a fast pass and returning at the good time. If I wait 15 mins-20 mins standing up I’ll be fine, but it’s the long wait that make me anxious, but hey ECV , fast pass + nap + slip day .... it will work! And like you said 10 days I surely have enough time to slip the day to rest and slip the park in 2 . And I know I won’t see every thing and believe me I don’t want that either...my brain will be to much overload.

yes you can take your ECV in lines with you the few you can not will have a wheel chair that you can use

Are you going a lone?

I posted more but my computer deleted it but will redo it soon looked like it added it to this one

 

[gap2368]

Also, I do not know if you are flexible on your dates but if you are then go on to Disney and try to find when the hotel rooms are the cheepest this will be when the parks are less busy so the line will not be as long and you can do more things.

 

[Hoodie]

Definitely get an ECV and utilize First Aid to rest. There are Minnie Vans that can take an ECV - not sure if this will still be going on in 2 years, but if it is, it would probably help.

For the resort - I would determine which park is top priority. EPCOT resorts are easy because you can go right in and either take the path or the boat to Hollywood Studios. Contemporary has a walking path direct to Magic Kingdom. The reason I say pick your top park is because it can take a good hour just in transportation/security/entrance to get from some of the hotels to the parks. Same with the return, especially if you need to wait for another bus with the ECV. If you are going with someone it may be beneficial to rent a car. I don't want to discourage you but just make you aware that the last 2 times we were down, Disney transportation was not really timely at all. It ended up being a detriment instead of a bonus.

The good thing is that you are two years away. A lot of time to plan and adapt as necessary.

 

[hsmamato2]

from the little I know about the DAS,I don't know that it would help you due to your fatigue. I do know a bit about what you're describing, and it's not really standing,or anything in particular that causes the "fatigue" (IMHO that's a bad name for what happens in your body at those moments but that's just me) I would advise you stay onsite,so when you start to feel something coming on, you exit the park. Before full on symptoms hit you,just grab the bus back to your hotel. You can close your eyes on the bus ride back ,and then rest. It's possible that a good schedule planned plus possibly an ECV for the long walking days may help you more than DAS,which merely gives you a different place to wait for a ride, not shorten the wait. I don't know that they would alow a full on nap at first aid(but I really don't know this) and to me, it would be more beneficial to go back to my hotel, get the rest time,and then maybe head back to the park when you feel up to it. And as others have said, try to schedule a few FP around your 'best' times of day, say in the morning, then rest in afternoon, then possibly more activity later.

 

[Carine]

remember you will be able to take ECV in most lines all the way to the ride and your ECV will be where you exit waiting for you. there are a few rides where you have to transfer to a wheelchair which will bring to back to your ECV. at those rides the are wheelchairs there for you to use. you do not have to rent one in the park to ride these rides. there are very few rides that you cant use a wheelchair/ECV in line People Mover is one. if you have balance issues I would look at a folding cane that will fit in ECV basket to help you on and off rides esp the ones with moving ramp like Haunted Mansion as this helped me a lot last trip

Thank you Betty Rohrer,

I didn’t thought about the cane. I don’t have balance issue, but if I don’t listen to my first signs and try to stretch my alarm widow before resting I might.

 

[Carine]

Also I would go and stop at guest service and let them know you have a litmmited number of hours in the park and ask them what whould be best for you, so that you can enjoy as much as you can ( I really would not even say I heard there was a specle pass or anything like this) If you find you miss a FP becuse you are too tierd ( not becuse you were doing something else) Io wulsdomeone know often times things can happen if you let someone know ( like one of the nures at Fisrt aid, Guest relstion CM some one at the ride you had a FP for ( I miss FP all the time due to my medical problems and Iowuld say 75% of the time if I say something they wil do something so that I can ride when I am able too ( I have seen and know if other people that do this too )

yes you can take your ECV in lines with you the few you can not will have a wheel chair that you can use

Are you going a lone?

I posted more but my computer deleted it but will redo it soon looked like it added it to this one

Ha

gap2368, I won’t be alone, I am going with my boyfriend. I don’t think I could do that alone anyway lol

 

[gap2368]

Thank you Betty Rohrer,

I didn’t thought about the cane. I don’t have balance issue, but if I don’t listen to my first signs and try to stretch my alarm widow before resting I might.

I know this is easier said then done but please listen to your body and if you need to rest stop and rest 9 either at first aid or your hotel) I know that it is easy to get caught up in the Disney bubble I did this and I landed in the ER so not fun. I know have a pane that works for me ( I have my alarm go off on my phone every 3 or 4 hours when it goes off I take a break no matter what)

I am glad you are going with your boyfriend. can he help you does he know your signs for when you need a rest. Some people find that using an ECV take too much energy you might do better with a wheelchair if he can push you and you can walk some ( using it as a walker) just something to think about.

 

[Carine]

from the little I know about the DAS,I don't know that it would help you due to your fatigue. I do know a bit about what you're describing, and it's not really standing,or anything in particular that causes the "fatigue" (IMHO that's a bad name for what happens in your body at those moments but that's just me) I would advise you stay onsite,so when you start to feel something coming on, you exit the park. Before full on symptoms hit you,just grab the bus back to your hotel. You can close your eyes on the bus ride back ,and then rest. It's possible that a good schedule planned plus possibly an ECV for the long walking days may help you more than DAS,which merely gives you a different place to wait for a ride, not shorten the wait. I don't know that they would alow a full on nap at first aid(but I really don't know this) and to me, it would be more beneficial to go back to my hotel, get the rest time,and then maybe head back to the park when you feel up to it. And as others have said, try to schedule a few FP around your 'best' times of day, say in the morning, then rest in afternoon, then possibly more activity later.

Thank you hsmamato2, your right nothing in particular could cause the fatigue except everything lol. Strange to said but it’s true.

 

[Carine]

Also, I do not know if you are flexible on your dates but if you are then go on to Disney and try to find when the hotel rooms are the cheepest this will be when the parks are less busy so the line will not be as long and you can do more things.

gap2368, I m completly flexible that’s why I’m taking so much time in advance to plan. To make sure to have the best time, hotel, price and all I need to know for my needs so that every thing ou almost every will be stress free and I will be enjoying my vacation like anybody else. Wondering should I rent a ECV for my boyfriend as well? I means even if those thing are not super fast I might ending be faster then him. He can always park the EVC outside the attraction and wait standing up. But at the hotel we put our ECV inside the room? Is there enough place? Just a thought.

 

[gap2368]

gap2368, I m completly flexible that’s why I’m taking so much time in advance to plan. To make sure to have the best time, hotel, price and all I need to know for my needs so that every thing ou almost every will be stress free and I will be enjoying my vacation like anybody else. Wondering should I rent a ECV for my boyfriend as well? I means even if those thing are not super fast I might ending be faster then him. He can always park the EVC outside the attraction and wait standing up. But at the hotel we put our ECV inside the room? Is there enough place? Just a thought.

The ECV can go faster than the average person walking but I would not go faster then he can walk as you run the risk of running into people and that would not be fun. If he does not need one I would not get him one. this way if you want to walk some he could ride some. Also, only two ECV can go on a bus together and if someone else is waiting and he has an ECV too you will have to go to the park in a different bus or wait for another one. does not happen that often but it does, with one ECV your less likely to need to wait, and I know I would feel really bad if my boyfriend had an ECV and we were waiting for the bus and another ECV came and had to wait because my boy friend had an ECV when he did not really need one.

Please put your ECV IN YOUR ROOM. ( not yelling just making a point) I have had a too many people leaving there or a rented ECV out of there room and I have had a hard time getting in my room ( and I do not use an ECV or wheelchair) so for those people it would be harder, I have also seen a group of teen joy riding someone ECV they left it out every night in the hall way of the hotel I saw some teens on with it late one night the next day the people were looking for it, I was so annoyed they had left it out every night making it hard to get in my room I did nothing said nothing ( I really did not know where the teens left the ECV or really what they looked like so was not much help but I just did not care) point is to keep it in your room as there is enougth room for it, if need be you can have the table and chiar taken out to give you more room. and if you have a deluxe resort then there will be more then enough room.

If you can hold off on going for a few more years, DIsney is doing a lot for there 50 annivery you might want to go after the 50 as there will be a lot to do, you said that your health has gotten a lot better I would wait a year and just see how you are doing or go in two years and then go agin in two more years this way you can see some of the new things that will be in for the 50th anniversy but toy story land and maybe star wars land should be opend for your visits

 

[pfalcioni]

One thing to think about in regards to Park Hopping, the actual transportation time between parks can be considerable. We usually plan on at least an hour from the time we decide to hop until we go through the gates of the other park. The same is true of going back to your resort for a rest, in most cases transportation will eat up at least a half hour. In your situation I would concentrate on spending your entire park day in one park and using the First Aid stations for naps.

If you have a decent touring plan you can actually get quite a bit done in 3 or 4 hours, especially if you get there before the park opens, so you can plan at least some of your park days to be just half days and still fit in plenty of fun.

 

[hsmamato2]

Thank you hsmamato2, your right nothing in particular could cause the fatigue except everything lol. Strange to said but it’s true.

I know.....