Still trying to accept that I have to have a ECV...

Discussion in 'disABILITIES!' started by Mom of 3, Jul 19, 2006.

  1. Esmk

    Esmk Earning My Ears

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    I too am relatively young, have RA and lupus, and on a normal day do not use a wheel chair. We have never gone to disney because I am afraid of not being able to walk. On other vacations after the first day I am relegated to our hotel room in pain and fatigue. I swore I would not get an ecv because I did not want my kids to remember that for their first trip. But this week, a month before our trip, my health has flared.

    I have two questions. When you rent, can you use a regular hotel room? Can you use regular transportation like the monorail?

    Timid and not sure I can do this.... But if I dont we may have to cancel the trip. I guess that would be worse.
     
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  3. poohbear7

    poohbear7 DIS Veteran

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    You can use a regular room with an ECV.
    Yes you can use the Monorail they have wheelchair cars that have more room for a wheelchair or ECV. The busses are easy to use also they will load you first and you will be unloaded last.
     
  4. Castillo Mom

    Castillo Mom DIS Veteran

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    You can do this. I know how you feel because I'm similar thoughts, but at some point we have to come to terms with these health issues and deal with them the best way we can. And you're correct, it would be much more disapointing for your children if you cancelled the trip. My first experience with the ECV last summer made me realize that I was causing more worry burden for my kids by not accepting my limitations. Keep reading these boards, it'll make the process easier for you. We can learn a lot from others that post here.
     
  5. Esmk

    Esmk Earning My Ears

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    Reading this post from begining to end has made such a difference in my outlook to this trip! Two days ago, disappointed by health, I think I was ready to cancel. Now to begin looking into how/where to rent ecv's.
     
  6. BlindTyldak

    BlindTyldak WoW-geek

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    My DH has MS and we rented an ECV last trip. For this one we bought an inexpensive one for him outright, since we can now use it for any vacation we take, even day trips. He's got a great outlook on it, when people give him "that look", which he gets a lot because he looks like an extremely healthy guy until he stands up. He just stares back at them and asks "What's the matter? Jealous?" with a huge grin on his face. :rotfl:

    don't worry about what people think or the looks they give you. DH is right, by 3 PM most of them are probably going to be thinking not an inconsiderate "look at her, too lazy to walk", they're going to be thinking "what I wouldn't give to have one of those right now!" :goodvibes
     
  7. travelitis

    travelitis DIS Veteran

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    I had to start using a wheelchair or ECV in my mid 20's because of reconstructive surgery on both feet. I'm used to getting those looks. Sunglasses are your friend. That and just not looking at those people. When it has gotten to me I've just wrapped my ankle. It didn't help me, but it gave them a reason their narrow minds could accept, and I fielded substantially fewer glares and could better enjoy myself.

    I'm really oblivious to it now. Last week when we were at the parks I told my dh that people seemed less judgemental and nicer. He hadn't noticed any change and had seen plenty of dirty looks cast my way. The difference is I choose not to see those people. They can stare at me all they want, but I don't even notice, because they don't exist in MY Disney World. If someone glares, but no one looks, they've only succeeded in hastening their wrinkles.
     
  8. I Love Pluto

    I Love Pluto DIS Veteran<br><font color=green>I guess that make

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    RA here, too. But I'm still stuck in the "I'll never use a chair" mode of thinking. We went to WDW in July. Each day - I made sure I used the pool mid-afternoon. It worked for me - really cut down on joint pain. Yes - sometimes I did hurt, but why complain? pluto:
     
  9. Haley Whippet

    Haley Whippet DIS Veteran

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    I will tell you your trip will be better using a ECV. You will be in less pain so you will be happier. You will have a basket and everyone will want you to carry their stuff :moped:
    I use mine to go on day trips at home, the zoo, the park, Etc
    I always end up carring water bottles and snacks, Everyone loves my ECV, Especially me!
    Just smile and no one will say a word.. :lmao:
    I have fibro, CFS and cronic pain.
    Deb
     
  10. Meezers

    Meezers Mouseketeer<br><font color=purple>my cats eat and

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    My DB (who just turned 39) has been told to use his cane all the time (he had a very bad hip injury). He is adjusting to the fact that someday he will not be able to walk. I also have some mobility issues.

    I hope you enjoy your EVC at WDW. We met some friends 2 years ago from the UK. It was the first time the guy had an EVC. I don't know what made him happier...WDW or the freedom to go where, when and how he wanted. Thank goodness he got NHS in the UK to buy one for him when he got home.

    To me...for a person with limited mobility ECV=Freedom! And don't worry about what other people are saying....I mean..it's not like your the size a whale and wearing Spandex :)

    PS...plus...you can volunteer to carry all the "junk" people seem to need to have at WDW!
     
  11. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    I've got a question for you to think about.
    Would you rather have your kids remember a first trip with a parent who was using an ECV and was able to do things and be fun or remember seeing their parent in pain?

    Maybe you would do the same things anyway, but the end result with the ECV would be doing them in comfort. Walking around in pain is just going to create more pain. My kids are older, but some of their early memories of WDW include watching their grandpa hobble around the parks, icing his knees after a day in the parks and sitting on a bench in a central place and not be able to enjoy the park with them. The last few trips before he died include memories of him using an ECV and really being included in the fun.

    My youngest DD can't walk at all and her first wheelchair was a freedom machine for her. I know some other parents of kids like her felt like the wheelchair was a depressing thing for them. It never was for us. We looked at it the same way as glasses - a way to do things that she would not otherwise be able to do. I might have a different perspective because without glasses, I can see clearly only about 5 inches away from my face (I even put my glasses on at night to get up in the dark). But, at least to me, ECVs and wheelchairs are glasses for the body.
     
  12. LindaBabe

    LindaBabe <br><img src="http://www.wdwinfo.com/dis-sponsor/i

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    Husbands who disapprove are THE WORST! Mine kept saying all you need is more exercise. Finally, after a bout with food poisoning took every bit of energy I had left, I flat out said I am using this ecv and you can go p*** up a rope. :moped:

    Well our friends that were with us didn't make any big deal out of it and it was SO liberating to actually be able to keep up with everyone. DH finally realized how much 'his' fun was hampered by my disability, and he has never said another negative word. Honestly, some times guys can bge so thick.

    I also use a cane to travel and take it with me on the ecv for when I need to get off and walk or stand - it gives me something to lean on . . .and something to use on the first person that "looks at me funny" heheh.
     
  13. Esmk

    Esmk Earning My Ears

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    Wow.... Everything you said makes so much sense. I was telling my husband we'd rent but only use AFTER I was in pain/exhausted and could not walk further. That way I'd do my best to be normal. But by then I guess I'd also be grumpy, sore, and not having a good time, neither would they. Time to push past some pride here....

    Thank you!
     
  14. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Hope you have a GREAT TIME. :wizard:
     
  15. diz8297

    diz8297 <font color=teal>The only culture she knows is at

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    My Mom joins us on our trips to WDW. Over the years, her back problems have progressed so that she went from renting ECV's at the parks to having one delivered to our resort to use throughout her stay. It has made such a difference in her experience. Please, please, please, use the ECV if it will make your trip more enjoyable. It is more important to enjoy your vacation and create memories than be concerned about other people.

    God Bless!
    :sunny:
    Phyllis
     
  16. powellrj

    powellrj DIS Veteran

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    Thank you for this thread. Because of it I am renting an EVC this trip. I have OA in both knees and am having knee replacement at the first of the year. Because I am only 46, we have held off as long as the DR. felt we could.

    I didn't think I was disabled enough and didn't want to take an EVC away from someone who needed one more than I did. I would look longingly at those with EVCs and wish that I could use one too. I was just afraid to admit I needed one, I was afraid at would others would say, I was afraid that I would have one when other people needed it more than I did.

    After reading your thread, I changed my mind and called and rented one for this trip. I held off until right before we left because I had hoped that the cortisone shots would work, but they haven't helped at all this time.

    Thanks again for giving me the courage I needed to make the call.
     
  17. diz8297

    diz8297 <font color=teal>The only culture she knows is at

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    I am so glad! Now go have a wonderful time!!!!! :banana:
    phyllis
     
  18. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    ::yes::
    Go and have fun.
     
  19. Haley Whippet

    Haley Whippet DIS Veteran

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    :grouphug: Have a great time, Enjoy the freedom you will have :moped:
    Deb
     
  20. arminnie

    arminnie <font color=blue>Tossed the butter kept the gin<br

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    I have CFS but do not have the pain problems of FMS that most CFS people do. I have never rented an ECV because not only can I walk, I actually love to walk.

    Before I had CFS I might walk 4 miles for exercise. It is something that I used to really enjoy. But I have found that I get exhausted at WDW and usually end up spending 1-2 unable to leave my room because of fatigue after a day at the parks (usually 4-6 hours not all day).

    So I am seriously considering getting an ECV in September. I know the heat is going to be really hard on me in September too.

    I guess my biggest fear is not any comments (I will be 60 next week so people don't expect much of me), but just how difficult is it to navigate an ECV through the parks?
     
  21. Haley Whippet

    Haley Whippet DIS Veteran

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    :moped:
    First, I am 51 and use a ECV, No one really says anything about it, At WDW people are usually very kind, Rarely will you ever hear any comment. No big deal.
    As for the parks, It is very easy getting around on a ECV. You will have a better trip because you won't be worn out. Go for it, Get one and enjoy the ride :Pinkbounc
    Deb
     

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