Nervous about upcoming trip

[Nandid]

I'm becoming extremely nervous about my upcoming trip to Disney.
I am disabled, but normaly have no problems with my disability. I suffer from a condition similar to MS, but unlike MS it is not degenerative. I don't use a wheelchair or anything to get around. I have flare ups of my disorder from time to time, but I recently had one and the likelyhood of having another soon is very very slim. When i have flareups I can become totally non ambulatory and sometimes require hospitalization. My flareups happen about once a year or so.

I"m just so nervous now I don't know what to do. I"m so afraid something will happen when I'm at Disney. I am traveling alone with my two youngest children ages 14 and 3.
My son knows how to handle my emergencys and knows i need extra help sometimes. He is patient and very helpful.

When i started planning this trip it was the entire family going, my husband, four of our kids and one grandbaby. But work and school have cut the traveling party drastically. I will be in Florida for two weeks. The last four days my husband will join us, but between the time i get there and than I'm on my own. I thought about changing my plans and changing plane tickets and coming back early, but the cost to change the tickets is more than what i originally paid for them.

I'm just so nervous. I haven't been to Disney since i was diagnosed with my condition. We have gone on trips other places and i usually don't have problems. If i do they are minor and a little rest cures the problem. However this is the first trip I've ever done that is longer than just a few days by myself.

I don't know if I'm just so nervous because I am just recovering from a flare up. It takes me a long time after a flare up to get back to doing things like i did before i had it. I leave in less than two weeks and i'm a total wreck.

Any suggestions to help me calm down and realize I can do this?

 

[peemagg]

I have a question for you. Does over doing it tend to make flare ups worse or wipes you out? If so you might want to look into having a ECV rented from an off-site company or even from home. IF this will help to reduce the possibilities of a flare-up, then you should think about it.

Since you didn't say what tends to bring your flare ups on, it makes it hard to give some advice without more details. If you could tells us more about what triggers things, maybe we can be more help.

 

[Nandid]

The minor flare ups I have can be brought on by lots of things. Lack of sleep, stress, not eating right, improper dose of medication. Theres so many things that can bring it on.


A major flareup usually has just shows up. Usually they are a surprise. There is usually no reason for them. I usually notice a few weeks before they hit that i have minal upper body strength and from there it escalates to no strength at all anywhere. Usually i will go through A period of a week or so where i can barely walk.

The disorder i suffer from can b very unperdictable. I am pretty good at figureing out when my next flare up will be. My last one started in early July and I just came out of it about a week and a half ago. I am still having mild symptoms..but that is common after a major flare up. The mild symptoms i am having don't stop me from walking or standing or carrying things. My vision is slightly off at times,.cuz my eyes cross but i can adjust to that.

Usually a mild flare up requires me to just sit down and rest for 20 mins or so.

Last summer my family went on a tour of National Parks for 10 days. I did great on that. I hiked 5 miles carrying a baby. I walked all over the place. I had a ton of strength and endurance. We went on a cruise in May and i did ok with that. Only problem i had was all the stairs on one of the tours.

I have just never gone on a trip like this by myself. My hubby has always been there. That or one of my older kids. I'm just really nervous..i'm still getting use to even having what i have. It's been three years and usually i don't have problems so it's hard to even admit I am even disabled. I've never used a wheel chair or anything in the past to get around. I have never needed it. At home if i have a flare up that is so bad i don't have the strength to walk..that usually means i stay at home and dont go anywhere.

I really was looking forward to this trip untili had the flare up in july and i started getting really really nervous and anxious. We have put this particular trip off five times in the past four years. Twice because of things that happened to me(neither time was related to my disorder in anyway..one was an emergency surgery and the other was a forced bed rest when i was pregnant with my youngest) and the rest because of other things. We have never got this close to going on this trip. My son is very excited about going ..my three year old is talking constantly about seeing mickey mouse. My hubby feels im ok to go do this,my neurologist says go for it. My older kids say you can do it. Everyone at home seems to think i'm up to this ..me on the other hand am a nervous wreck.

 

[peemagg]

I think you need to do whatever you can to reduce your possibility of a flare up. I agree with your husband that the trip is doable provided that the 14 year old understands that they are going to need to be of a lot of assistance. If that means helping with the little one or being the gopher for everything, so be it.

Seeing as how you are going for such a long time, I would not try and hit a park every day. I think I would go to a park one day and take a day off to rest. Also on park days, go back to the room to rest in the afternoon. With some careful planning, you can do this. I don't know if a GAC would be of use to you, but you might look into one.

Have you read the disAbilities FAQ's section at the top of this forum? There is a lot of useful info in there. I would also get the book "PassPorters Open Mouse for Walt Disney World and Disney Cruise Line". It has info from trips with infants to all sorts of other disabilities. It explains different options out there that are available to those of us with disabilities of all sorts.