Multiple Sclerosis & Family Trip to WDW!!!!

[4lowesonthego]

Welcome to my pre-trip report about having MS and going to Disney. Of course having MS isn't a prerequisite to read it. Maybe no one will read it at all, but I've been looking for something like this and can't find it! So if I can't find it, I'll make it, maybe it'll help someone else.

My name is Devin, I'm 35 and will be traveling with DH 37, DS 12, and DD 10 (with epilepsy). The last week of March will be our 3rd trip to the world! I do have MS so forgive me if I misspell or completely use the wrong word altogether, it is what it is.

I was dx with MS seven years ago after having surgery to remove a brain tumor that was actually MS. Recovery from that took many months, some things I never recovered from. Maybe you can relate if you have this stinking disease. I felt like I had to get everything in, all the things that I really wanted to accomplish, before I was too sick to do it. Of course, I know now, that wasn't completely true. I'm not going to turn this into one of the MS med ads that show us running through fields of daisies because I just feel THAT good, but the future doesn't feel quite that dismal now.

That brings me to our 1st trip to the world, taking my children was definitely on my bucket list of things I absolutely had to get done. It was a great trip in most every way, but I won't sugar coat it, some things were really hard to deal with. Probably the worst was having to use an ECV, and that can be tough when your young, newly diagnosed, and "look" so good. I have no doubt that in my mind it was worse than the reality, but some of the glares I received getting on the busses, were not fun to have to endure for me or my family. Obviously, now I have thicker skin, we have to have that with MS, right? Refer to my it is what it is comment in the second paragraph.

Our second trip, two years later,was fantastic. We rented a car to carry the ECV, so no glares. I figured out, with a nap I could do half the day with the ECV, go take a nap, and do the bus for the later part. I wasn't so newly diagnosed, so I gave a few glares back. I know, not nice, but it made me feel better! I should mention that Disney is amazing with handling people with different needs, I've never felt any negativity from them.

So fast forward to today, the planning of trip #3. Woohoo! My DS will be 13 in a few weeks, both of them are growing up, so this will be our last trip with just kids, no teens! That's important to me for reasons I don't entirely understand. Another big difference is that I'm now taking Tecfidera for my MS, and I feel good (I don't want to say it too loud, I might jinx it! Just kidding.......well mostly!). This will be the first trip that I will attempt to not use an ECV, but I'll keep the # handy in case I need it. I'll give more details about our trip soon, for now I need to go, but thanks for reading what I have thus far. Hope it wasn't too boring, but it is what it is!

 

[4lowesonthego]

Okay, so it's been awhile since I posted last. I've had some pretty bad MS days, but I'm doing better so the planing continues!

We're down to less than 3 weeks now, so I'm beginning to feel a little bit of a time crunch. I made my FPP selections at 60 days out and then (thank goodness!!!) got in on the one day that the FPP glitch happened. So I've got 1st tier fast passes for Epcot and HS, I'm kind of embarrassed about how happy I was about that. I'm talking tears of joy here kind of happy. It's an absolute must to go back to our resort to nap in the afternoon, so I was pretty worried about our ability to do that (ride those rides that is) with this new system. Since I'm attempting this trip without an ECV I'm trying to plan out our days to do the least amount of walking, no crisscrossing the park if possible!

I'm in the stage of planing of our trip that I'm "mapping" out our days. My husband keeps telling me that I shouldn't worry about it so much, we should just go with flow so dd and I aren't pushed too hard. He really worries about us, and I love him for that, but I'm of the opinion the more you plan the better your trip. I think it's when you get there if things don't work out, then you say okay, whatever we're still having a great time. The one thing that's not ideal about the glitch that allowed all the good fast passes is that I'm terrified to touch them! I don't want to change a thing for fear that I might loose them, but that's okay, I'm planning around that!

Our first day in the parks will be a Sunday at MK. I'm anticipating a busy day there, being the weekend during spring break time. I managed to get a fast pass for Be Our Guest from 11:10-11:40am so I'm starting our day in Tomorrowland so we can make our way around to Fantasyland for BOG. I plan to do rope drop each day, but I know with each day the exhaustion is going to get worse. We'll see if that actually happens. After TL, Fantasyland, Thunder Mtn (FPP), lunch (BOG FPP), Splash Mtn (FPP), Aloha Isle for the Dole Whip, back up to Tom Sawyer Isl, then back to POP to rest. Tom Sawyer is ALOT of walking, but there are some great benches to sit on near the raft dock that I anticipate taking advantage of! After our break, we have Pirates of the Caribbean FPP from 7-8pm. Before that, I think we'll do Pecos Bill for dinner. After that we can just do anything we missed earlier in the day. We'll be back at MK to do fireworks and parades on Wednesday, which will be a break/pool day for us except for that.

I know I'm doing a little bit of backtracking, but I think it'll be okay.

That's it for now, but I'll share more soon!

 

[J'aime Paris]

I wish you the best of luck with your trip! You're young, and have a positive attitude! MS sucks, but you will prevail!!
(My DH's uncle has a quickly progressive form of MS. It has robbed him of so much, so fast.)