Chronic Fatigue Syndrome,Fibromyalgia, and other "invisible" illnesses in WDW

[jtwras]

I just wanted to start a thread here about dealing with "invisible" and sometimes questioned illnesses.

I suffer from two of these conditions ( CFS/FM) and have found that some people don't know what it is or think that it is not a real illness.
This is a difficult thing for sufferers to deal with.

In my case, I deal with being tired almost all the time, getting worn out from exertion to the point where I am bedridden later that day or the next day and daily headaches and pain.
If you have either of these illnesses you know what I mean.

I went to WDW in May of this year (2005) and asked for a GAC to aid me in my vacation. I explained that I couldn't afford a wheelchair but wondered if the GAC would be something that could help me. I was very nicely accomodated with a card that allowed me use the standard wheelchair access. I was pleasantly surprised at how nice she was and that she didn't give me a difficult time since I don't "look sick".

The first time I decided to use it, was at Tomorrowland Indy Speedway (I only used it when I had too). The CM there was so polite and ushered us right in. Almost all of the treatment I recieved was just as nice.
For the first time I felt that my condition was accepted and acknowledged...
I admit I cried.

However a few "choice" CMs did ask where my wheelchair was and gave me a lecture about which queue to use since I didn't have one (even though I had asked the first CM I saw at each attraction and went where they told me.)

Anyone else have something to share about their experiences? Post them here.

Jtwras = Jennitwr on vmk

 

[JoannaOhio]

I haven't been to Disney World since December 2000, and my DD pushed me around in a wheelchair then, so I didn't really have an issue at the parks with my invisible disabilities. I have been living with CFIDS (Chronic Fatigue Immune Deficiency Syndrome) and Fibromyalgia for the past 11 years. I developed it while going through 8 months of chemo after breast cancer surgery, but I didn't know the full effects of the disease(s) until I was finished with chemo and the symptoms persisted. The hardest part for me in the beginning was being dismissed by the very young "doctors" (i.e. med students) at the clinic that I could afford to go to. They insisted that my problems all stemmed from being post cancer treatment, post menopausal, and depressed. One of them even had the nerve to say to me, "I'm tired all the time, too, but I still come to work every day!" (I really don't wish this disease on anyone else, but I wish there was a way for them to have to live with it for even a week.) They told me I was fatigued because I was depressed. I told them I was depressed because I was so fatigued, etc., but they didn't "get it".

Fortunately, my surgeon's office helped me to get on Medicaid, and I was able to go to a real doctor - who immediately understood and verified the diagnosis I had arrived at after much reading and research. I am retired, and I usually try to schedule my time so I do activities (swim at the Y, grocery, other errands, etc.) on one day, and then allow myself to stay home and rest the next. Even with these accommodations, I sometimes have a couple of days in a row where I can barely get out of bed. When we come to Disney World in December, I'm hoping my disabilities won't get in the way of our fun. My DD's fiancee has MD and will be in a motorized wheelchair. He also has a manual chair which I will be using. We won't be at any of the parks at rope drop, so we may miss out on the few E-ticket rides that interest us, but I'm sure we'll still have a good time.

We'll arrive on Sunday afternoon, December 18th, and we plan to buy groceries and settle in to our rented villa - and probably take a dip in the private heated pool. Unless EMH hours change our routine, we plan to go to MGM Studios on Monday - not worrying if we don't get there till noon - and staying till the park closes. Tuesday we'll sleep in, and go to Mickey's Very Merry Christmas Party - trying to be at the turnstyles at 4pm to get in early with only our MVMCP tickets. Wednesday will probably be a rest day - with maybe a relatively short trip to DTD. Then there's Thursday and Friday to plan. Since the crowds will increase as the week goes on, we'll need to decide if we want to go back to MK on one of those days. I guess it depends on how many things we still want to do there (including seeing the Spectromagic parade, which won't happen on our MVMCP night). If another day at MK is still on our schedule, we'll probably do that on Thursday, and go to Epcot on Friday - realizing that Friday will be more crowded than Thursday, but Epcot is also a bigger park and can handle bigger crowds more easily. (We bought 7-day, non-expiring, non-hopper passes, so it won't be a big issue whether to use 4 or only 3 park days this trip, and we'll save whatever is left for our next Disney vacation - whenever that may be).

We'll still have a bit more vacation in Florida, but we don't plan to set foot in any of the Disney parks after Friday, December 23rd. We have no desire to join in that mob scene! We visited SeaWorld on Christmas Day in 2000, and it wasn't at all crowded, so we'll probably go there at least one day (and maybe a second day with their second-day-free offer). I guess I've gotten a bit off track here, but it's been a while since I've talked about CF & Fibro with other sufferers. For those who haven't experienced it, this insidious disease not only makes you fatigued - (and it is an overwhelming fatigue that is worse than any "tiredness" you've ever experienced) - it can rob you of short term memory, the ability to think and speak logically (often searching your brain for the word you know is there but won't come out of your mouth) - trouble getting restorative sleep - painful muscle aches and spasms - clouded vision - and many other invisible symptoms. All of these are very real for those of us who live with these disabilities, and it's made even harder when you run up against doctors who don't believe it is a "real" illness.

jtwras, I'm glad that most of your experiences at WDW were positive (or so it seemed from your post). Hang in there, and do whatever works best for you.

 

[MommytoMJM]

I too have Fibro and auto immune arthritis. We do the parks every weeekend, but I have my husband to help me, he attaches my wheelchair to my daughters and pushes us both through the parks. I ususally have to use my pain meds and I rest during the rest of the week. My husband does most of the household derrand running and stuff and works nights so he can be home to help me with MJ during the day. I too get looks from guests, fortunately most of the CM's know me and no longer question it. although last night I had a run in with a custodial CM last night over using the companion restroom when he wanted to empty the trash....Unfortunately for him, a manager I know was standing there......she wasn't too happy with him.

Anyway, feel free to ask any questions, it is nice to have a support here with you all!

 

[WHIT1]

I too have Fibro and auto immune arthritis. We do the parks every weeekend, but I have my husband to help me, he attaches my wheelchair to my daughters and pushes us both through the parks. I ususally have to use my pain meds and I rest during the rest of the week. My husband does most of the household derrand running and stuff and works nights so he can be home to help me with MJ during the day. I too get looks from guests, fortunately most of the CM's know me and no longer question it. although last night I had a run in with a custodial CM last night over using the companion restroom when he wanted to empty the trash....Unfortunately for him, a manager I know was standing there......she wasn't too happy with him.

Anyway, feel free to ask any questions, it is nice to have a support here with you all!

i have fibro and have had it for 10 yrs and i always did well going to disney but i also was working and on my feet alot. but not i'm on disability and i am concerned about the walking. do you do any walking there or in the wheelchair the whole time? i was wondering how your lower back and knees were after a day there. that will be my concern.

 

[WHIT1]

I just wanted to start a thread here about dealing with two "invisible" and sometimes questioned illnesses.

I suffer from both of these conditions and have found that some people don't know what it is or think that it is not a real illness.
This is a difficult thing for sufferers to deal with.

In my case, I deal with being tired almost all the time, getting worn out from exertion to the point where I am bedridden later that day or the next day and daily headaches and pain.
If you have either of these illnesses you know what I mean.

I went to WDW in May of this year (2005) and asked for a GAC to aid me in my vacation. I explained that I couldn't afford a wheelchair but wondered if the GAC would be something that could help me. I was very nicely accomodated with a card that allowed me use the standard wheelchair access. I was pleasantly surprised at how nice she was and that she didn't give me a difficult time since I don't "look sick".

The first time I decided to use it, was at Tomorrowland Indy Speedway (I only used it when I had too). The CM there was so polite and ushered us right in. Almost all of the treatment I recieved was just as nice.
For the first time I felt that my condition was accepted and acknowledged...
I admit I cried.

However a few "choice" CMs did ask where my wheelchair was and gave me a lecture about which queue to use since I didn't have one (even though I had asked the first CM I saw at each attraction and went where they told me.)

Anyone else have something to share about their experiences? Post them here.

Jtwras = Jennitwr on vmk

if your read my heading you will see there are more illiness that are connected and make it very hard to function in life . i know i had to go on disability this year because of all of the above. with these conditions you seem to loose more and more of your independence and thats why i go to disney to try to get some of it back.people look down on you when you tell them whats wrong and drs please. when the dr told me i had meniere's he gave me a rx and walked out the door didn't even tell me what it was. had to go unline to learn about it. just like fibro. i feel like i have these conditions so i can maybe help someone else who is the same way.

 

[jtwras]

I am so pleased to see others who can contribute to this thread!
One feels less alone when you see others who understand what is involved with having an "invisible" condition.

As far as walking is concerned, I walked the whole time since I could not afford a wheelchair. I pushed our daughter's stroller sometimes for support. My lower back was killing me after the first two days, and I took it really slow at EPCOT after that (there are alot of little slopes there). As far as my knees are concerned, I don't have much problem with them so they were fine for me. I also tried to sleep in as much as I could during our trip and made sure to stretch out and take preventative pain reliever every 4 hours ( and I used two kinds of meds and rotated them). When we got home I was bedridden for two days straight (as planned), but it was worth it! We had one of the best vacations ever.

I wish that I could go on disability but so far I have not been able to prove my case to the Social Security people. I have been trying for 5 years now. I cannot work because I am not sure I will be able to get out of bed every day. *sigh* Oh well......

I agree that I don't wish these conditions on anyone, but it would be nice if some people could experience it for just 1 week. Then they would understand.
My husband and I joke that I should get a job with Social Security, then when I have "down days" and cannot come in, maybe they will get it.

Play in the park without the pain and fatigue in Disney's Virtual Magic Kingdom! Visit vmk . com

Jtwras = Jennitwr on vmk

 

[sarahjane]

Just joined the forum and saw that a thread had been started re CFS. My son is 5 years old and has now been diagnosed with cfs for a year. We are going to disney in august and I have been worrying about what kind of assistance we can get for my son. He will be in a pushchair since he gets so fatigued but this isn't the half of it. The fatigue isn't just caused by physicial exertion - mental exertion, over stimulation heat etc etc can all have an effect on him. He is unable to attend school full time with the condition. We will use the pushchair as a wheelchair but I am also concerned about waiting times, the heat etc as he will not be able to deal with too much of this either and I was wondering if there was any other concessions we would be able to get for him. ie. waiting in cool places opposed to in the queues in the heat. We intend to take things very easy anyway with lots of rest days ( we are in florida for 17 days) but obviously the easier we can make it for our son whilst in the parks a better time will be had by all and we need to pace it so he dosesnt have a relapse. I know I'm rambling a bit but as others have said previously this illness can not be seen which makes it incredibly difficult to explain to others. The symptoms can vary from day to day but the bottom line is should my son over do it either physically or mentally he can end up in bed or laid up on the settee for days. Any suggestions would be gratefully accepted.

 

[WHIT1]

Just joined the forum and saw that a thread had been started re CFS. My son is 5 years old and has now been diagnosed with cfs for a year. We are going to disney in august and I have been worrying about what kind of assistance we can get for my son. He will be in a pushchair since he gets so fatigued but this isn't the half of it. The fatigue isn't just caused by physicial exertion - mental exertion, over stimulation heat etc etc can all have an effect on him. He is unable to attend school full time with the condition. We will use the pushchair as a wheelchair but I am also concerned about waiting times, the heat etc as he will not be able to deal with too much of this either and I was wondering if there was any other concessions we would be able to get for him. ie. waiting in cool places opposed to in the queues in the heat. We intend to take things very easy anyway with lots of rest days ( we are in florida for 17 days) but obviously the easier we can make it for our son whilst in the parks a better time will be had by all and we need to pace it so he dosesnt have a relapse. I know I'm rambling a bit but as others have said previously this illness can not be seen which makes it incredibly difficult to explain to others. The symptoms can vary from day to day but the bottom line is should my son over do it either physically or mentally he can end up in bed or laid up on the settee for days. Any suggestions would be gratefully accepted.


so sorry that your son has cfs at such a young age. as an adult its hard to function. he has his whole life ahead of him and having deal with this. is he learning what he can and can not do without paying the price? it will take a long time with alot of trial and error,plus be positive thinking . you can live a somewhat normal life. just alot of adjusting.do have a great trip and let us know how it goes.

 

[jtwras]

We will use the pushchair as a wheelchair but I am also concerned about waiting times, the heat etc as he will not be able to deal with too much of this either and I was wondering if there was any other concessions we would be able to get for him. ie. waiting in cool places opposed to in the queues in the heat.

Sorry to hear about your Son's diagnosis. I have a hard enough time as an adult who understands what is happening to my body. I can only imagine how difficult it must be to be younger and suffering.

Regarding your question about waiting times and cool shaded places to wait, there are places like these at almost every attraction. Even if it is not in the standard or wheelchair queue line, they will do their best to accomodate your Son's needs.

Make sure you go to guest services at the first park you go to on your first day and ask for a GAC (guest assistance card). When you are asking one be sure to tell them not only his condition but that he needs to have areas of this type to wait in. They will give you a special needs park guide along with your GAC and be happy to answer any question you may have. The GAC is good for the entire time you will be in the parks (all 17 days )! Just be sure to get a special needs guide at each park.

Hope your vacation will be as great (overall) as ours was!

Visit the park without pain or fatigue at Disney's Virtual Magic Kingdom
go to " vmk . com "

Jtwras = Jennitwr on vmk

 

[jtwras]

For those who haven't experienced it, this insidious disease not only makes you fatigued - (and it is an overwhelming fatigue that is worse than any "tiredness" you've ever experienced) - it can rob you of short term memory, the ability to think and speak logically (often searching your brain for the word you know is there but won't come out of your mouth) - trouble getting restorative sleep - painful muscle aches and spasms - clouded vision - and many other invisible symptoms.

I couldn't have put it better!

One of them even had the nerve to say to me, "I'm tired all the time, too, but I still come to work every day!" (I really don't wish this disease on anyone else, but I wish there was a way for them to have to live with it for even a week.) They told me I was fatigued because I was depressed. I told them I was depressed because I was so fatigued, etc., but they didn't "get it".

I have actually had an employer say the same thing to me (but luckily no doctors)!


Thank you for sharing your ups and downs with us.



Play in the park without the pain and fatigue in Disney's Virtual Magic Kingdom! Visit vmk . com

Jtwras = Jennitwr on vmk

 

[SueM in MN]

Just joined the forum and saw that a thread had been started re CFS. My son is 5 years old and has now been diagnosed with cfs for a year. We are going to disney in august and I have been worrying about what kind of assistance we can get for my son. He will be in a pushchair since he gets so fatigued but this isn't the half of it. The fatigue isn't just caused by physicial exertion - mental exertion, over stimulation heat etc etc can all have an effect on him. He is unable to attend school full time with the condition. We will use the pushchair as a wheelchair but I am also concerned about waiting times, the heat etc as he will not be able to deal with too much of this either and I was wondering if there was any other concessions we would be able to get for him. ie. waiting in cool places opposed to in the queues in the heat. We intend to take things very easy anyway with lots of rest days ( we are in florida for 17 days) but obviously the easier we can make it for our son whilst in the parks a better time will be had by all and we need to pace it so he dosesnt have a relapse. I know I'm rambling a bit but as others have said previously this illness can not be seen which makes it incredibly difficult to explain to others. The symptoms can vary from day to day but the bottom line is should my son over do it either physically or mentally he can end up in bed or laid up on the settee for days. Any suggestions would be gratefully accepted.

You can request a GAC to use the stroller (pushcar) as a wheelchair and also explain his other needs. You can acually look at the Guidebooks for Guests with Disabilities at each park on the official Disney website. That can give you an idea of which attractions might be too loud and/or over stimulating. (One hint is that many of the attractions that are not recommended for service animals often have things like explosions, fire or sudden loud noises).

If you can go at another time of year (which I know might not be possible), you might want to choose a cooler month since August is rather one of the hotter months and it is fairly busy since people in the US are at the end of school vacations.

Going to the park early in the morning is good if you can do that. By going early, you miss the warmest parts of the day and also most of the crowds. Even during the busiest months, you can usually see many attractions in the first few hours after the park opens with little or no wait. My DH went to MK during Spring break ( a very busy time) with my oldest DD, my niece and nephew just after opening. They were able to see all the Fantasyland attractions plus Space Mountain and Splash Mountain without a wait of more than 15 minutes for anything. If you go early in the morning, you can leave the park by 10:30 or 11, having seen a lot before it gets too hot. Then, take a rest and/or swim at your hotel and, if you want, return in the early evening, when it begins to get cooler and the crowds have died down.

Fastpass is very helpful. You can send one member of your party ahead with all your park passes to the fastpass machine at the attraction. The fastpass that comes out of the machine gives a time to return. When you return, your wait in line will be 15 minutes or less.

Most of the queues are well shaded and some of the outdoor ones (yes, even outdoor ones) are even air conditioned.

If he needs a cool, dim spot to "recharge" for a while, you can always go to First Aid. They have individual cubicles with a cot, a chair for someone to sit with him and a small table. If you have cell phones or walkie talkies, you can contact the rest of your party when you are done resting.
Another place to "recharge" from the MK is to go to one of the nearby resorts. they all have nice lobbies where you can sit in a cool area in comfortable chairs for a while. Many of them have a children's area where a TV is playing Disney movies.

 

[jjmowen]

All of this information is such a big help!

I also have an "invisible" disease. I have interstitial cystitis. It causes much pain and constant runnning to the restroom. I was very worried about handling the long lines at the parks. On our last trip in 03 I had some problems. By the time I waited 45 min in line I had to use the restroom so bad I was miserable and in pain on the ride.

We are leaving on Saturday and I am quite anxious. My doctor wrote a note for me explaining my disease, but I was not sure how it would be received. I hope to have a good experience. I won't need to use a wheelchair as sitting can cause worse pain than standing. I feel better knowing others have been treated well.

Thanks.

 

[SueM in MN]

My doctor wrote a note for me explaining my disease, but I was not sure how it would be received. I hope to have a good experience. I won't need to use a wheelchair as sitting can cause worse pain than standing. I feel better knowing others have been treated well.

Thanks.

They may not want to see your letter; they don't need one, although some people with invisible disabilities feel more comfortable asking for assitance if they have a letter. Be prepared to explain what your needs are (not your diagnosis) and think of what might assist you in dealing with your needs. In general, the guest Assistance card (GAC) is not meant to shorten or eliminate your wait in line, just to provide conditions that accomidate your needs.

 

[JoannaOhio]

If waiting in a long line (45 min. or so) is unavoidable, might it be possible for someone needing to use the restroom to get out of line and then get back in with the rest of their family?

 

[MommytoMJM]

i have fibro and have had it for 10 yrs and i always did well going to disney but i also was working and on my feet alot. but not i'm on disability and i am concerned about the walking. do you do any walking there or in the wheelchair the whole time? i was wondering how your lower back and knees were after a day there. that will be my concern.

I am in my chair all day (except for transferring to rides and in the bathroom, etc....) It is the lesser of two evil for me...I pad my chair and take a lumbar support pillow and straighten my knees every few minutes. Sometimes I stand to stretch, but I know my limits on walking...we actually used to rent me a chair until we discovered that I couldn't walk from the monrail or parking lot to where the chairs were rented.

 

[WHIT1]

All of this information is such a big help!

I also have an "invisible" disease. I have interstitial cystitis. It causes much pain and constant runnning to the restroom. I was very worried about handling the long lines at the parks. On our last trip in 03 I had some problems. By the time I waited 45 min in line I had to use the restroom so bad I was miserable and in pain on the ride.

We are leaving on Saturday and I am quite anxious. My doctor wrote a note for me explaining my disease, but I was not sure how it would be received. I hope to have a good experience. I won't need to use a wheelchair as sitting can cause worse pain than standing. I feel better knowing others have been treated well.

Thanks.

had to look that one up and i feel for you. i have nervous bladder and that is miserable enough where you can't injoy what you are doing without that urge. but here is hoping you still have a great disney time.

 

[Cheshire_cat]

Sending a hug to all of you who posted. I was diagnosed with Lupus 2 years ago after many doctors told me I was fine....."you have 2 kids, you're supposed to be tired and achy". I haven't been to Disney for awhile, so I don't know how my body will react. I guess I'll figure that out when we get enough money to go

 

[sarahjane]

Just joined the forum and saw that a thread had been started re CFS. My son is 5 years old and has now been diagnosed with cfs for a year. We are going to disney in august and I have been worrying about what kind of assistance we can get for my son. He will be in a pushchair since he gets so fatigued but this isn't the half of it. The fatigue isn't just caused by physicial exertion - mental exertion, over stimulation heat etc etc can all have an effect on him. He is unable to attend school full time with the condition. We will use the pushchair as a wheelchair but I am also concerned about waiting times, the heat etc as he will not be able to deal with too much of this either and I was wondering if there was any other concessions we would be able to get for him. ie. waiting in cool places opposed to in the queues in the heat. We intend to take things very easy anyway with lots of rest days ( we are in florida for 17 days) but obviously the easier we can make it for our son whilst in the parks a better time will be had by all and we need to pace it so he dosesnt have a relapse. I know I'm rambling a bit but as others have said previously this illness can not be seen which makes it incredibly difficult to explain to others. The symptoms can vary from day to day but the bottom line is should my son over do it either physically or mentally he can end up in bed or laid up on the settee for days. Any suggestions would be gratefully accepted.

Thanks for advice. We have to go in August as I have three other children as well as DS one of which is in senior school so have to go during holidays. We have been to Disney before when children were younger so we are in the lucky position that we know what we def want to see etc. We intend to use fastpass as much as possible and generally plan our days. We are also going to take a couple of days "out" and drive to Clearwater to chillout.

As other people have posted one of the hardest things is that he looks so well most of the time and you do tend to get lots of negative comments like what is a child that size doing in a pushchair. Oh look at him running around - there is nothing wrong with him. I'm afraid I still haven't hardened to this.

We have even had so called friends tell us that should we be going on a holiday like this with a child with this illness. Well we have three other children whose whole life can't be put on hold and I am postive that if we manage the holiday sensibly that our son will have a brilliant time. I don't want him to miss out because of this horrible illness.

I am sorry for rambling again and apologise if I have ended up posting this message (although not quite in the same words) twice. I don;t think I did it right the first time.

 

[babyblues68]

I hope others read this and realize you can't see all of our disablities. I've been living with FM/CFS for almost 4 years now. Even close friends still don't understand. It's always comforting to hear from others with this. You know someone out there knows what your going thru.

December 2005 will be our first trip back to DIS since I've been sick. I'm praying I don't have a bad flare while on vacation. My husband does everything for our family since my illness. I'm hoping he gets a break being on vacation.

TC

 

[WHIT1]

I hope others read this and realize you can't see all of our disablities. I've been living with FM/CFS for almost 4 years now. Even close friends still don't understand. It's always comforting to hear from others with this. You know someone out there knows what your going thru.

December 2005 will be our first trip back to DIS since I've been sick. I'm praying I don't have a bad flare while on vacation. My husband does everything for our family since my illness. I'm hoping he gets a break being on vacation.

TC

i know what you mean about first trip its been 2 yrs and its been 1 whole year of being out of work and during that time i have worked hard getting some of my life back. people give me weird looks like there isn't nothing wrong with you especially people i use to work with. it took every ounce of energy for me to look normal and to function at my job. but i am looking forward to this trip and i will have to really take it easy walking and doing steps. i am going in oct and will be celebrating my bd and that my accomplisehments,i hope. so good luck!!!