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

[JoannaOhio]

I live in Ohio, my grown daughter lives in Maryland, and her fiancee lives near Pittsburgh. (They met online through eHarmony.) He has muscular dystrophy, and is unable to drive. Although he is employed full time, his mother needs to come to his house every morning and evening to get him out of bed and dressed, pack his lunch, prepare his evening meal, get him undressed and back in bed at night - along with all the other smaller accommodations. My daughter drives to spend 2 or 3 (or 4 or 5) weekends a month with him, and I have driven over from Ohio for a "family" weekend several times.

His disabilities are very obvious, and although I had talked with him about my problems with CFS, fibromyalgia, et al, I don't think he really understood the scope of it until this past weekend. We convened in PA, and spent most of 4th of July at his mother's house. She lives a few blocks away, and also cares for her older son with MD.

Anyway, I had purposely planned to stay over until Tuesday, 7/5, so I could spend all day Monday there and not have to drive home at night. I slept in on Monday - partly to just be out of the way of his normal daily routine of getting off to work. I had been up for a couple of hours, when I felt like I needed an "emergency nap". I lay down at 11:30am - even set the alarm - but the next thing I knew it was 2:30pm, and I could barely get myself out of bed. For those who live with this "invisible" disability, you've probably experienced a similar kind of fatigue. No matter how much I sleep, I feel "drugged". At 2:30, I realized there was absolutely no way that I could make a safe drive home that day.

Fortunately, my future son-in-law is a real sweetie, and he didn't mind at all that I needed to stay over another night. He was very concerned about whether I was "okay", and it gave me the opportunity to describe to him what CFS fatigue and fog are really like. Since we're planning to all be living together in Maryland within the next year (including my 14-year-old granddaughter), it's probably good that he's beginning to have a better understanding of my disabilities. Too bad most of our friends and acquaintances don't really get the chance to witness our problems firsthand.

 

[jtwras]

I have been reading all the posts and thinking to myself how many of us there are! It is a comforting feeling to have so many people here understand what we are going through, since there seem like so many out there who have no clue!

I know how hard it is to have something really wonderful planned and have a flare up. All things take a back seat to those!! I hope that you all can have a great time in WDW when you go. The GAC really helped, but I did use fast pass when I could and took it really easy (for a WDW vacation ).


On a side note.. I have not been able to go on disability for my condition.
Do any of you have a suggestion for me?

Hope you all have restful days and nights!

 

[zumbergc]

On a side note.. I have not been able to go on disability for my condition.
Do any of you have a suggestion for me?

Hope you all have restful days and nights!

I've been reading a lot on some fibro boards. A lot of people don't get disability their first time. Some it takes time and time again, and a lawyer to help. It might be useful to get a hold of your medical records. There are some people who have found that their doctors are kind of writing different things in their notes, than actually telling the patients. So they thought they had a good doc, to help them with the disability, but really they didn't. I'm sure some docs don't want anything to do with claiming disability case.
I don't have any specific advice, but there are some fibro boards over on yahoo, and someone there could give you better tips.

Fibro isn't fun. It took me a long to time to use a wheel chair in the parks. In the visits before the wheel chair (even before i was diagnosed with fibro, at night i was in lots of pain, icing down some of the parts that really hurt. After the first day, whatever body part was the worst that trip hurt pretty much the rest of the trip.

I get looks from people, i try to walk some, and my hubby drives the scooter.
Or we park the scooter sometimes, and both walk. All depend on how the legs, back feel.. Its a compromise, i can't walk a whole or even a half day so, i walk some to keep the leg stregth up. I generally try to not let it get me down when we get nasty looks. I figure, if they were in pain for a month after a disney trip, they'd be in a scooter too. Since they aren't in pain for a month, or months after a disney trip, i figure they can just be ignored.
We upgraded to a scooter a couple trips ago, and won't go back to a push chair. So much more freedom and independance. Plus, with some back issues the chair is much better.

Last trip i even brought my own extra coushin for the back. I'm short, only 5'1" tall. so even with the seat at the low spot, i can't sit back comfortably and hold the handle. With my back rest from home, it helped a lot. I used a low back support, which i get on-line, and add that to a cushion i made myself. That way i was forward enough to comfortable reach the handle without throwing my back/shoulder off in pain.. Plus, you can get boat fabric, think pleather, to make a cover to that your home made cushion doesn't get wet in the florida showers. I used some rope to attatch it to the scooter, with some punched holes in the sides of the boat fabric, with those metal rings. Worked great, wasn't the best looking thing, but it was really comfortable for me.


Connie

 

[puggymom]

Wow, I never visit this forum, but noticed this thread on the main page. I have had fibro since I was 16, now approaching 39. There is a great website http://www.fibromyalgiachat.com that I visit, They have some geat advice. One thing I found from that board is the wonders of cherry juice, I take it every morning and it has helped in ways I couldn't imagine. I have bought from a place www.brownwoodacres.com. I mix with ice and water and a little sweet and low. Next time I am going to try the gelcaps. I am fortunate that I can still a pretty normal life, though as I get older it does take more out of me.

 

[Talking Hands]

I am taking cherries themselves instead of cherry juice. I use the frozen cherries as they are readily available in the grocery store. They do help woth the stiffness and pain.

 

[JoannaOhio]

Wow, I never visit this forum, but noticed this thread on the main page. I have had fibro since I was 16, now approaching 39. There is a great website http://www.fibromyalgiachat.com that I visit, They have some geat advice. One thing I found from that board is the wonders of cherry juice, I take it every morning and it has helped in ways I couldn't imagine. I have bought from a place www.brownwoodacres.com. I mix with ice and water and a little sweet and low. Next time I am going to try the gelcaps. I am fortunate that I can still a pretty normal life, though as I get older it does take more out of me.

I am taking cherries themselves instead of cherry juice. I use the frozen cherries as they are readily available in the grocery store. They do help with the stiffness and pain.

Thanks puggymom for the links to the fibro website. I just added it to my favorites, and will go back later when I have more time to read. It's funny, but back before I developed CFS & Fibro, an older friend of mine preached the virtues of eating cherries to ease the pain of arthritis. She used to buy canned pitted sour cherries, and then mix them with a can of the sweet cherry filling for pies. (She also suggests fresh pineapple.) We lived together for a while, and since I moved away I have gotten out of the cherries habit, but I think I'll try it again.

You just never know what you're going to find on these fabulous DIS boards.

 

[mjaynes288]

Is there anyone on this board with MCS(multiple chemical sensitivities)? I want to go to Disneyland but am afraid I will be gassed by people who thing it is their right to polute the air with formaldahyde, tolulene, hexane, and other cancer causing chemicals(AKA ingredients of perfume).

 

[JoannaOhio]

I am sensitive to all scented products - perfumes, deoderants, detergents & fabric softeners, etc. It's always a risk to make plans for an event that involves reserved seating - because I might get stuck next to someone who is heavily perfumed. It makes my nose hurt and gives me a headache. Sometimes I can switch seats with others in my party, and that helps a little. I have been to gatherings - (mostly sponsored by women) - where participants were asked to not wear any scents. I wish that was true of all events that take place in enclosed spaces. Guess I'll just have to take my chances and hope for the best at Disney World.

 

[heavenly]

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

I have had Lupus since 95 (the rashes showed up during a WDW trip) and if you follow the advice here and remember to pace yourself you can do well. I was diagnosed with Parkinsons two years ago and still make the trip. Granted I do rent an ECV, but I try to moderate it's use through the use of a GAC, I don't always need or want to use it.

 

[heavenly]

I have been reading all the posts and thinking to myself how many of us there are! It is a comforting feeling to have so many people here understand what we are going through, since there seem like so many out there who have no clue!

I know how hard it is to have something really wonderful planned and have a flare up. All things take a back seat to those!! I hope that you all can have a great time in WDW when you go. The GAC really helped, but I did use fast pass when I could and took it really easy (for a WDW vacation ).


On a side note.. I have not been able to go on disability for my condition.
Do any of you have a suggestion for me?

Hope you all have restful days and nights!

The best suggestion I know regarding the disabilty issue is to contact your elected officials. Sit down and write them a letter, let them feel "a day in your life" and if they are worth anything you will get a response. Don't just send it to one, hit your congressman, both senators and even the White House.

 

[JenJen]

Wow! I just signed up for this board and I can not believe there is someone besides me that has Fibro and CFIDS that love to visit amusement parks
I was diagnosed with fibro and CFIDS at 12 and I am 30 years old now. I understand what you all go through. It is very frustrating "looking normal" and having a war going on in your body.
I am so happy to hear that WDW was so accommodating to your needs when you went. Although I have been to WDW a few times I visit Disneyland in Anaheim California more often because that is where I am located. About two years ago (I believe) Disneyland went to the WDW version of the GAC and it has cut down on a lot of abuse but it has also made it more difficult to get for situations like ours. I don't think that they undersatnd that a wheelchair can make our problems worse. Although everyone with fibro and CFIDS is differant, wheelchairs make me more achey and cause a flare up the next day. They also do not help the fact that after 3 hours I am exhasted if I am walking, sitting, standing.
I also have a great web site for those of you with Fibro or related illnesses it is call fibrohugs . Not only is it very informative it is a great place for support if you or a loved ones suffer from fibro or related illnesses such as Lupus or arthritis. For all of you that have suffered from this devastating disease my thoughts and prayers are with you through your journey.
JenJen

 

[dyna]

WOW just stumbled onto this thread you don't know how many times I'd wished for a thread like this and just didn't really have the words myself.

My DD now 15 yrs old was dx'd 2 yrs ago with CFS/FIBRO, Central pain processing disorder and a few other things. WE have been to hell and back a couple times had some really really hard times but she doing MUCH MUCH better the past few months.

Just wanted to say it's nice to know there is others out there with the same illness that understands. Please feel free to PM me if you'd like to chat more on this subject.

Also I too suffer from the chemical odors not only do I get sinus migraines that can last for days but asthma attacks are not fun.

 

[dyna]

BUMP

Those with CFS/Fibro please feel free to send me a PM

 

[babyblues68]

I am sensitive to all scented products - perfumes, deoderants, detergents & fabric softeners, etc. It's always a risk to make plans for an event that involves reserved seating - because I might get stuck next to someone who is heavily perfumed. It makes my nose hurt and gives me a headache. Sometimes I can switch seats with others in my party, and that helps a little. I have been to gatherings - (mostly sponsored by women) - where participants were asked to not wear any scents. I wish that was true of all events that take place in enclosed spaces. Guess I'll just have to take my chances and hope for the best at Disney World.

I wish hospitals would have their nurses and other at hospital employees not to wear perfumes. I can't count how many time my mother was in the hospital. It never failed at least one nurse coming in would have a strong perfume on. My mother would get so sick from it. That was a long time ago. Sents didn't bother me, until this past May. I had gastric-bypass. The assistant that wheeled me to my car had the strongest perfume on. I would have puked if I would have had food in me. Ever since the I can't even wear any perfume. My surgery was a great thing. It has helped with my fibro some, but, i have migrains from strong oders now.

TC

 

[SueM in MN]

I wish hospitals would have their nurses and other at hospital employees not to wear perfumes.TC

The hospital I work in is fragrance free asa much as possible (it's impossible to get some products fragrance free, but we try). Perfume/fragrances wearing is not allowed according to our personnel policies. Now, if we could just get the visitors to comply.
So, hospitals are starting to think about it.

 

[babyblues68]

The hospital I work in is fragrance free asa much as possible (it's impossible to get some products fragrance free, but we try). Perfume/fragrances wearing is not allowed according to our personnel policies. Now, if we could just get the visitors to comply.
So, hospitals are starting to think about it.

I agree about the visitors. I used to work at a hospital and you could smell them down the hall and know who was coming.

 

[Ploni]

I have RA, which is also an invisible disability. We went to Disney in April '05 and I rented an ECV. The problem was that even with a GAC to use the wheelchair entrance, Disney thinks that the regular entrance is accessible on certain rides and it just isn't true -- at least not for an ECV being steered by a person with limited mobility in her hands & arms. (My kids get very upset at the sight of me in a regular wheelchair, so that wasn't an option.) On Test Track, I nearly started a riot after I hit/ran over the feet of several people in line (who, granted, wouldn't give me any space to maneuver). By the time we got to the front of the line, I was in tears and we skipped the ride, and after that I didn't go on any attractions that wouldn't allow me to use a special entrance.

We wanted to go back this October, but I didn't want to have a similar experience. I called Disney, got transferred around a lot, and found the office that deals with guest relations and disabilities. They argued quite a bit that the entrances were appropriate, but I told them that they weren't appropriate for ME, that I'd been going to Disney since 1972, the trip in April was the first one since I got sick, and it would be the last if I didn't get some additional accomodation. Finally, they agreed to give me a GAC that allows me to bypass the regular line on ALL attractions. I got the usual speech that I may still have the same wait time, etc., but I don't care.

The point is that you can get what you need if you're willing to advocate for it. Tell them how long you've been coming to Disney (or how much you've looked forward to it). Remind them of Disney's tradition of accomodating guests with disabilities. Whatever you do, don't hang up the phone until you get what you need.

 

[JenJen]

What they will have you do is wait the time of the line outside of the que in a waiting area or give you a time to come back later in the day. (that is what normally happens at WDW) I for one do not believe that because you are disabled you should go right to the front of the line but I do feel they need to accommodate you so that you can go on all the rides that anyone else can go on. There is an exception to those children with autism or sensory issues because they have meltdowns if they have to wait to long but even some of these children can have a "come back time" Every child is differant with these conditions but still even a "Come back time" the same amount of time you would wait in the line would be appropriate. I myself have Fibromyalgia, CFIDS, MS, a seizure disorder, anxiety disorder, and OA but I don't expect them to let me right on. I know what I am getting myself into when I go to an amusement park and that I will have to walk a lot and have extended waits at some places and it will be a long day like everyone else. Did I like the old system better when you went right up to the front of the line with a disability pass? Of course I did but it is not necessary and it is not even the law. All the law states is that people like us have equal access to everything like everyone else. Not special access. This may sound harsh but it is the truth. Disney has done such a great job accommodating guest with disabilities better then any park I know. They accommodate each need differently which is remarkable and I applaud them!!!!
JenJen

 

[Ploni]

That's fine. I don't object to waiting -- I object to being put in a position where I'm injuring people because Disney's lines are in fact too narrow to easily turn an ECV in (again, maybe this is because I have problems with my hands, I don't know, but all I know is that *I* can't do it, and it was preventing me from going on certain attractions.

My point is that, if your needs are different than those of others, even others with the same disability that you have, advocate for yourself until they meet those needs. The cast members at Guest Services probably have limited authority to make exceptions, and they have limited time, which is why I called ahead. It took about a 15-minute conversation to convince their disabilities expert to make an exception, but he did it. Again, I think the key is that I was very polite, kept saying how much I love Disney, and REFUSED to take no for an answer.

 

[bellecat22]

Hi Everyone!

I'm new here, and I was reading all your posts about your "invisible" illnesses.
I too have one or two or three of them. In the past few of years I have had a couple of brain surgeries which has left me with balance issues and other residual problems. I also have plantar fasciitis which doesn't allow me to walk long distances. I finally bit the bullet and rented an ECV after twisting my ankle this past September at WDW and I have to say 99% of the Cast Members did not even give me a second glance. That really made me not feel like such an outcast, since everyone says, "Well you don't LOOK sick".

As for anyone trying to get on disability, keep trying and get a lawyer or advocate. I got denied 4 times and finally had to go to court to get on disabilty. If anyone wants to email me, please feel free, I would be happy to give you any info I have on the subject.