Teenagers with Chronic Fatigue Syndrome

Stratocastermagic

<font color=blue>I bought this guitar and I learne
Joined
Feb 29, 2004
We will be visiting WDW in July/August 2004 with two teenage sons, both of whom have Chronic Fatigue Syndrome (CFS - also known as ME).
Does anyone have experience of visiting WDW with this condition and any tips or advice on how to get the best out of our trip? What help can we expect or should we seek?
We'd be very grateful for any ideas!
 
I would think the best thing to remember is WDW will be there for another trip. There is no way to see everything even if you were perfect and the weather was perfect and the stars were aligned perfectly!:p

Take as many breaks as you need. We love sitting and watching the people. Don't let the boys push themselves too hard. They should have fun, even if it is in small doses!:sunny:
 
I am not a teenager, but I do have CFS. I have learned not to push myself - I make sure I rest when I need to and don't try to rush to get to the parks in the morning.

I think it is very important to let the boys pace themselves. They will probably know best how much they are up to. I get in trouble when I get overtired - then I just shutdown completely for a week or two. Of course I am old (50+) so that accounts for some of it.

When I was first diagnosed it was sometimes hard for me to admit how tired I was and that I needed to rest - particularly when I was traveling with my aunts in their 70s or my 80 year old father. It was embarrassing that I could not keep up with them!

The heat also seems to zap me more than it did when I was younger. I've lived in New Orleans and Houston so it's not like I'm not used to heat and humidity. I find those spray fans work very well for me.

I've learned to avoid alcohol but that should not be an issue for teenaged boys.

I would also make a point of using the Fast Passes so that you will not be standing in long lines. I get a FP and then if I need to I go wait someplace that has a/c like one of the shows until it's time to go in.

I sort of alternate shows where you sit down with the rides but again it depends on what they will enjoy.

I often will go to parks for two days and take a day off and then back for two, etc. I used to be one to go to the parks when they opened and then not stop until they closed. I cannot do that now.

People with CFS as you know can have swings in energy levels. On some days I am almost normal and on others I can barely brush my teeth. Some people with CFS react adversely to barometric pressure changes. I also find that eating very large meals can zap me.

One thing that you might do between now and then is to try to determine if you can some of the triggers for their CFS low points -like I mentioned for me it can be heat, large meals, overexertion. This varies by person.

CFS is often very closely associated with fibromyalgia. While I do not have fibromyalgia I do have a general achy feelings a lot that is helped by ibuprofen. So I make sure that I have a large bottle in my suitcase and carry some with me at all times.

If you think the scooters would help then rent them. I haven't done that yet as I find them to be cumbersome and I can walk (and need to for exercise).

Will you be driving a car and do you have a handicap parking tag? I usually drive so I don't have to wait on buses. I ask the parking attendant if I can park in the first spot instead of way down a row so it's not so far to walk to the tram.

You might want to check into the GAC (which I think stands for general assistance card). There more data on this board about them. I do not use one so I don't have any information about them.

Good luck! I still have a great time at WDW. The good news is that it is much more common for CFS to go away in teenagers than it is for adults.
 
Welcome to disABILITIES.
If you think the scooters would help then rent them. I haven't done that yet as I find them to be cumbersome and I can walk (and need to for exercise).
That is good advice in general, but WDW parks won't rent scooters (ecvs) to be driven by people under 18 and the websites of most of the outside rental places also indicate that they will only rent for adults.
If they get very tired, you may need to rent wheelchairs for them (although getting a teenager to admit to being that tired is probably not going to happen).
Will you be driving a car and do you have a handicap parking tag? I usually drive so I don't have to wait on buses. I ask the parking attendant if I can park in the first spot instead of way down a row so it's not so far to walk to the tram.
The handicapped parking are at AK and the Studio are close to the entrance. Handicapped parking at Epcot is a fair hike. There are no parking lot trams from the handicapped parking area in any parks. The tram from the parking lot always brings you as close as possible to the actual park entrance, so the best advice might be to tell each parking CM that you get to that you have people with mobility issues and ask to park close to the tram stop.
If you are staying on site, it's best to take the bus (unless you are staying at a MK resort and can take the monorail or boat). The bus stop area is very close to the park turnstiles. If you drive and park in the parking lot, you will need to take the parking lot tram to get to the TTC, then take the monorail (up a long, steep ramp to get to the station) or boat to get to the same are where the bus lets you off. Most of the bus stops do have benches for use while waiting for the bus, so you almost never have to stand the whole time.
You might want to check into the GAC (which I think stands for general assistance card). There more data on this board about them. I do not use one so I don't have any information about them.
GAC is an abbreviation we use of the boards for Guest Assistance Card. It is a tool for CM to be able to tell what sorts of assistance is needed by someone with invisible disabilities. People who have wheelchairs or ecvs (or visible disabilities) generally don't need a GAC unless they also have invisible disabilities that are not taken care of by having a wheelchair accessible line. Examples of things a GAC would be used for include: a quieter place to wait (for someone with autism or sensory issues); to be able to bring a stroller into lines and use it like a wheelchair; being able to wait in a shaded spot if the queue is in the sun for a significant amount of time(although most queues are shaded). WDW doesn't generally give out GACs for conditions involving stamina. For stamina or tiredness issues, WDW's official publications suggest using a wheelchair or ecv and use of fastpass, since the time and distance spent in lines is smaller than the time and distance it takes to get from place to place.

WDW is a very large place, which most people don't fully appreciate until they are there. Just to walk around the lake in WS is over a mile, and the average person probably walks between 6 and 9 miles a day. Most of the walking is not in lines. If you walked that much all at once, it would be impossible. That's why pacing is very important.
Using fastpass is a good idea. You can send one member of your party ahead to get the fastpasses - You put your park tickets into the faspass machine. A fastpass pops out with a return time printed on it. When you return at the time, your wait in line is generally going to be 10 minutes or less.
Also, if you vcan get to the parks early, you can go on a lot of rides in a very short time without doing a lot of running around. When DH and I went in July (normally a busy time), we were able to go on about 8 things in MK before 11.

This is a very good website with a lot of information and resources about visiting WDW with disabilities or challenges. She has some hints for pacing, etc in the FAQs area.
 
Thanks very much for your replies. Forgive me for taking so long to acknowledge them - I decided to wait to see if any more would come, and then... Well, you know how it is!
I didn't make it clear in my original post that we are coming to Florida from England - so for us, this is a very 'big' vacation, something that we can't afford to do every year.
It'll be our third trip to WDW and we are very much looking forward to it. We've been talking about it for years! Because of this, there's a certain pressure to make sure that everything is perfect.
Now, I know that no vacation is perfect and that, with teenagers with CFS we are going to have to make some compromises and some tough decisions, but we are planning our trip like a military campaign to make sure that we don't waste our precious resources. We have the Unofficial Guide which we used on our last trip and which we found extremely helpful. This time, we'll have to follow the touring plans as far as we are able - while being gentle with ourselves (and our boys - and their grandparents!). We are going to be staying at AKL for 11 days, so we have quite a lot of time to spread out our theme park visits and 'must dos'.
After that, it's a week at New Port Ritchie (where we can sleep late!) and then a few days staying at Universal Studios (if we have all recovered enough energy!).
So, that's our vacation. We're looking forward to it! Thanks again for your input.
Best wishes,

Alan
 

GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!











facebook twitter
Top