Here's the true root of my frustration. Going to a Disney CM at Guest Services without a doctor's letter is like going to the post office to buy auto parts, because the CM's stare blankly, having no idea what this illness is. If your physical challenge is invisible, even at WDW, you're looked at suspiciously. I don't want to be treated better than other guests, but I would like to be treated as well which neccessitates a doctor's letter. We most certainly were treated as "less than" and as an inconvenience by several CM's on our last family trip. We ran into others experiencing the same thing. The GAC is useless when CM's refuse to honor it, ignore you, gripe about it, or question why you'd even be at Disney. (These ALL happened!)
Why don't we do something else for a vacation? Can you think of something any better, because we're open for suggestions! I'm tired of people acting like we're faking it or that we're so lucky to have an
ECV in the group like you get some special privileges. Yes, we get to take longer to get from place to place. I get to pop vicodin and still hurt, and my son who has the same pain gets to take regular Tylenol only because of gastrointestinal bleeding for which he was recently hospitalized.
Noise - This is part of the sensory overload issue. - Disorganized and random noise is what is really bad. Watching a movie, listening to a book on tape is good, but the TV or radio on for hours or being in a place where people are talking or yelling (baseball game) just causes intense pain. No one but doctors seems to understand this either. The noise out in the open walking between attractions is unobtrusive, but put someone with this problem in the middle of the maze with people all around in close quarters, and it can cause immediate, excruciating pain. Getting on the attraction, even loud ones like Dinosaur, is a relief because all the random chatter isn't piercing you anymore. It sounds weird, I know, but it's not completely about volumn. To keep noise (sensory) overload down, we do sit-down meals and avoid attractions when they have long lines. We don't do Illuminations or Fantasmic, and we've taken a fireworks cruise. We have an extensive list of coping techniques, many that cost us more money. We NEED the option of waiting in an alternate location away from bright light or the non-stop chatter when a wait is going to be, say, 30 minutes or so and my son is aching. If a 10 minute wait is too much, then we're headed out of the park or to first aid anyway. Ear plugs sound like the solution, but they don't totally fix it, and they get lost easily. I don't know why, but you can feel the noise, and the only way to make it better is to get outside away from it. I hate the big pavillions in Epcot when they're busy and have limited tolerance for being in them because of that. Among the worst lines (using Fastpass even) are Test Track and Space Mtn. Good lines for us have been Kali River Rapids (now that it's wider) and Haunted Mansion.
When I didn't need to spend less time in the parks and certainly didn't desire to go ahead of anyone, Disney was constantly, to my embarrassment, sending me to the head of the line via a special line. I even would tell CM's to let others who had been waiting longer in the other line to go and would just turn away if a line was long to avoid that scenario. Now that I have a child who needs about twice the rest and half the activity of normal kids just so he can cope with the non-stop pain, we often end up waiting longer than those without any health issues. I can't tell you how many times we went to the special entrance in the MK with our GAC and watched people who walked up after we did get on the ride before us. Perhaps the rides are less staffed, or maybe CM's are so accustomed to mainstreaming that when they work the attractions that aren't, they forget. I do know that we weren't the only ones running into that.
This all adds up to now needing special accomodations through a GAC, because hidden disabilities are more pronounced handicaps at WDW than in school and at home. If it weren't for Mission Space, we might stand a chance of talking the kids into a cruise instead of anther Disney year. One trip breeds more trips, and by the end of the 1st one, my dh will be declaring (once again) that he's done with Disney. It's my job to find a way to preserve his sanity on this trip that he, in a momentary mental lapse, suggested.
I was hoping to get an idea of what they can do on a GAC, but instead I'll talk to the rheumatologist and have him specify what should be done and why.
Just needed to vent, because I love Disney but am dreading this.