Me Freaking Out Right Before We Leave. Help? Thanks :)

[BethCPTSD]

Hi,
I'm sorry -- I hope I can write this in a way that you understand me. I've posted in the past about my various disabilities (not all of them) but now our trip is actually 8 days a way and not just something I'm planning on "hopefully soon". I have Dissociative Identity Disorder, Complex PTSD, Major Depressive Disorder, Obsessive-Compulsive Disorder, Anorexia, Sensory Integration difficulties, severe POTS and Chronic Fatigue Syndrome along with several other chronic illnesses, mostly diagnosed within the last year -- some still being figured out.

WIth my DID I have a ton of child parts, and dealing with me much of the time is like interacting with a four year old. I am an adult -- I'm married and have a service dog who is coming with us to WDW, but emotionally, I am most frequently a small "child" in horrific flashbacks. In fact, over the past year or more I've had a terrible problem with spontaneous vomiting from my flashbacks, often in the car, and this is one of my concerns about Disney World.

I use a power wheelchair -- though I just got it and am really a novice in using it and knowing about it. But walking at all, even more so in the heat is virtually impossible with my POTS. I even get heart attack type symptoms if I am also carrying an item are exerting extra energy, so the wc is a total necessity. My doctor told me one thing to do besides what I already am, is to bring salt tablets, drink fluids non-stop, and salt all my food (POTS is usually due to very low blood volume.)

But I'm just stressing out over all -- a cumulative effect of all these things, especially all my anxiety related disorders. I'm worried about the heat, I"m worried about our constant flashbacks and making sure I can make it, going throughout the parks. We'll be there for two weeks -- May 29-June 11.

I'm sure my husband will be of some help and my service dog too. But I haven't taken my service dog on this taxing of a trip before -- and while I can't do it without bringing him with me, I'm also concerned about his overheating and fatigue too.

I'm also worried about people being uncompassionate, cruel or mean -- maybe provoked by me being in my power chair and not being able to see why just by looking at me.

I"m just really freaking out a lot. I've been wanting to do this for so long, but there are a lot of potential issues I know I will have to get through. Any words of encouragement or advice would be very appreciated. Thank you. I'm sorry this is so long.

Beth

 

[DisneyOma]

(((hugs))) I think you are very brave! And smart - you know your issues, and are being pro-active about them. With my anxiety, I've always just thought 'what's the worst that could happen" and run a scenario in my head, but I'm thinking that may not help you. But think of each issue individually - even the vomiting is something WDW has seen and taken care of countless times. And all those people down there are just a bunch of strangers you're never going to see again anyways. If anyone dares to be rude to you down there, screw them! It's your vacation, and who are they to judge you? I've found that people who do that are very insecure themselves, and I feel sorry for them. They must be very unhappy people.

 

[Bete]

If you are staying onsite at a Disney resort my first suggestion is to do the parks with extra magic morning hour. There will be less crowds and that will help at that time. Make sure you use fastpass plus and DAS. These are explained further in other posts.

Absolutely take a break in the afternoon for rest and to get away from the crowds. There are extra magic hours at night, too. If you can stay out late this might help.

You will be limited on what rides you can do staying in a power chair. Shows won't be a problem. Inside shows will be air conditioned.

You can get free tap water and ice at the parks. Bring a travel bowl for your dog to be able to drink, too. For yourself get a good sun hat and use sunglasses. You can get a neck cooling band; there's gel in them that keep you cool using cold water.

I wouldn't plan long days in the parks. You can use the first aid centers in the parks for a rest.

If you can I would go to a local zoo for a practice day to get more comfortable using your power chair and getting your dog adjusted to a park like environment.

 

[BethCPTSD]

Thank you, DisneyOma and Bete I don't think I said this before, but I was pretty much housebound for about 4 years until I got my service dog Harrison, last December. So that's another reason this is a big step and naturally causing some anxiety!! Thank you for your tips and encouragement!

 

[BethCPTSD]

Also -- Bete, I'm actually staying in Disney Springs, so not an official Disney Resort. (Doubletree.) So, I won't have the option of Extra Magic Hours unfortunately, but we're still planning to take it slow. I'm glad we get to go for two weeks, that will help.

And I wanted to add I will be able to transfer out of my wheelchair. I can walk a few steps to the ride, as long as I can ride up to where I get on. Thank you <3

 

[Selket]

I have rented an ECV for about 2 years now (due to terribly arthritic knees). I also had a traumatic brain injury a bit over a year ago which has offered some additional challenges (but I had started renting an ECV in the parks before that because of my knees). I'm in my early 50's and otherwise healthy looking so I'm sure no one can tell why I have rented the ECV . I've never noticed anyone giving me bad looks or what not - most people are really more concerned with their own selves (in a good way - with their family or just focusing on what they're doing - or looking at their phone - haha!) and not paying any attention to me anymore than anyone else. Sometimes I'm able to park it and get up and walk a good bit - other trips (or other days on the same trip) I've stayed in it most of the time.

Enjoy your trip and take it at your pace!

 

[gap2368]

you will be fine take things slow, know that thing will not be prefect and have a great time. It looked like we will be down the same time so have a great time

 

[wilkeliza]

A big consideration I haven't seen you mention is times you'll have to be separated from your service dog. Do you have a plan of action as well as coping tools for those moments. If not then try to stick to rides that will allow him. There is a rides thag allow service dogs and a list of those with a kennel where you keep the service dog while riding. Make sure you are aware of those.

 

[BethCPTSD]

I can be away from him for a few moments, like if it's a brief ride, but really depending on how we are in that moment. Today I have a very loose grip on anything in reality. I'm prepared to not go on some things when being with him completely is top priority. Thank you for mentioning it.

 

[Bearshouse]

Remember that First Aid is your best friend. There is a place to lay down, usually quiet, and the nurses have always been great.

 

[BethCPTSD]

Thanks again everyone. I'm having a really hard time with very young child parts, of you can try to understand what that might be like. They're incredibly traumatized and respond the way children do. We've always had (since birth) strong tendencies of reactive attachment disorder and at certain times are completely flooded with violent (etc) thoughts about ourselves and others. (We don't act on them except towards ourselves, esp now in adulthood.) Child parts really struggling with feeling like they don't deserve to go to WDW because they are so "evil" and deserve to be dead. I,know this is going to be really hard for them and they're going to want to,hurt us to, "pay" for being allowed something good. I'm sorry, the closer we get to this trip, the more we are becoming flooded and parts getting destructive. Thank you In advance if you can respond in a compassionate way. I know this is not a mental health board. ((Hugs))

 

[cobright]

This is my core advice for taking a vacation with an anxiety disorder...

This is your vacation. It costs you a lot in terms of money, time, and energy. Take every step necessary or likely to make it a success.

350 days out of every year I'm battling anxiety, pushing myself to get stronger and better able to handle it on my own. And that works for me and I get a little better most days. But a trip to WDW is not most days. So I pack the bottle of big clonopins, the bottle of big ambiens, and the big big bottle of rum. And I use them all (not at the same time) preemptively. Most days I never touch a benzo and that's great, most days I'm not shelling out WDW $$.

Whatever your normal pharmaceutical intervention happens to be, talk to your prescriber about dialing it up for the duration of your trip.

 

[BethCPTSD]

Thanks, Cobright. I'm on a lot of meds, but down to only one psych PRN, which is Ativan. And I will be taking it a lot. I'll also be emailing with my therapist, and talking to him when he's back from HIS trip, during my second week at WDW. I also have flash cards I've made with quotes from him and his picture on each one, that are helpful reminders to me.

I used to have Geodon as a prn too, but I'm currently taking the max amount for 24 hours when I go to bed at night with my other meds, so I can't take any extra during the day.

Thank you for the tips and your kindness.

 

[Bete]

See if your doctors back home have suggestions for a doctor in Florida just in case you need one there.

You may have to have an alternate park strategy like doing half days rather than full days. Another way would be to have one day on at the parks and one day off.

 

[earfulofmagic]

Beth, lots of hugs.

I second the suggestion of hitting the parks early if you can. if your service dog isn't wearing protective footwear, early morning and evening walking will be easier on Harrison's paws I'm sure you've already thought of this, but if not, a light parasol to attach to your chair or wide sun hat can go a long way! no idea if this is feasible, but cooling towels (eg: https://www.amazon.com/Frogg-Toggs-...677&sr=8-1&keywords=frogg+toggs+cooling+towel) help my dog on hot summer days.

I wouldn't worry too much about this part of planning, but it -may- help to check crowd calendars. They're mostly projections (some accurate, others not). Supposedly going to non-EMH parks on any given day is a way to avoid busy crowds. just food for thought.

two weeks at WDW sounds awesome, because there's no need to rush to fill any of your days, and you don't need to spend all day everyday out and about!
if I had two weeks my plan would resemble this: go to a park most mornings, spend my afternoons by the pool, or reading/napping, then maybe Disney Springs for dinner or explore my hotel, read, maybe a park if I hadn't gone that morning and felt up to it. ...but I am basically a vampiric homebody, opposed to sweat, heat, and unnecessarily heavy crowds. YMMV

Disney is an interesting place because there's a lot of pressure to ~have fun and BE HAPPY and "get yer money's worth" and make the best memories ever!~, but it's unrealistic. A Disney vacation is template-free! Do whatever makes you happy, and try to give yourself the patience and space to allow that.

And lastly, I won't get too deep into this, but you are far from alone here. I hope you only encounter accommodating and understanding folks on your trip.
Oh, and on people perhaps mistreating you because of invisible illnesses... I can't know what you or your husband's style is, but laaaaawd if I ever see anyone be cruel to anyone using DAS at Disney, I will likely be escorted out of the park. Some of the comments left by readers on this blog post give me hope that these are not wholly unfamiliar paths, and that cast members will be helpful: (http://www.disneytouristblog.com/disability-access-service-tips-disney-world-tips/)

Have a great time!!

 

[BethCPTSD]

Earfulofmagic,
thank you so much for your compassionate and thoughtful post! I used the link that you provided at the bottom too, and really liked the article and comments (i'm addicted to comments sections!)

You talked about the idea of a parasol to attach to my wheelchair. It's an excellent idea, one that I think would help -- but I'm not sure how to go about acquiring one, especially since we leave Sunday. Perhaps it's too late. I also don't know what would be needed in order to attach it to my wheelchair. Basically, I already will be using both hands -- for the wc joystick, and the other to hold on to my service dog. Thank you for the idea though!! Maybe it can still be worked out.

And thank you for saying I'm not alone. That's very reassuring, and I know other people have difficult trials too. In a sense, the worst part for me is having a developmental disorder (DID being called a developmental post-traumatic disorder) because it effects every aspect of even my most basic understandings of the world. And experiencing emotions in the way that children do -- where it's volatile, fragile and sensitive, etc. is complicated and hard (even to explain!) But anyway, thank you again. And I hope you enjoy your vacation too when it comes along. Take care.

 

[wilkeliza]

I'm not sure if anyone gave you this advice but if need be when you go to get a DAS have your husband as for you. I'm sure he knows your needs and why waiting outside the standard line would be benificial. Remember disgnosis means nothing for getting the DAS but needs are. Perhaps even together write down what you might say and how you would answer specific questions so it is available.

I'm not sure where you live but you could possible have amazon deliver you the umbrella attachment. I would imagine a stroller umbrella attachment would work if you can't find a wheelchair one. As long as there is some pipe you could put it around you can use it for almsot any umbrella.

 

[BethCPTSD]

Thanks! That's a good idea. My husband usually stands back and lets me do all the talking, but with this I think I could really use his help, so I can probably convince him to do so.
And I appreciate the tip on the stroller umbrella attachment. Just checking it out on amazon. Take care!