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

[Mom of 3]

I still get that niggly feeling in my tummy that I have to use a ECV to get around. I know I need to accept the fact but it's hard.

In my every day life I don't use a wheel chair because I can limit the amount of walking I do and if I'm having a bad day I can take it easy. I have Rheumatoid Arthritus and even though I can walk for a good couple of hours there is no way I could walk for an entire day around Disney.

Plus when you are at Disney and you park the ECV and walk to a regular seat or get up to stretch your legs you get those looks or comments from other people that don't see you as having a disability.

Hubby tells me to be sensible and just use the ECV because if I did over do it on my feet I really wouldn't be able to walk at all. The first time I ever went to Disney I refused to be in a wheel chair and walked around for most of the day even though my feet really hurt and by the end of the day I couldn't walk at all. I couldn't even make it from my bed to the bathroom without being carried.

I'm sure others that don't have an obvious disability or can do normal activities for a couple of hours before feeling tired or being in pain must feel funny about having to be in a wheelchair or ECV.

I suppose I'll get over it and make sure my 3 boys have a great time, DS10, DS6, and DS2.

Thanks for listening,

Anita

 

[poohbear7]

Please use an ECV. I know how you feel it took me a long time before I would admit I needed one. One time when we were at Disney I refused to use one and my family saw me stuggle. They went and rented one for me and brought it to me without me knowing. I had no choice but to use it and what a difference it made. I've never looked back I now take my own to Disney.
Don't worry about what others think by looking at me you would never know I have more than one disability. Go use the ECV and enjoy your trip it will make your trip a lot easier and enjoyable.

 

[Alex2kMommy]

I'm so glad you are going to use an ECV at Disney! My mom is overweight and has bad ankles, and can barely make it through the grocery store. She was embarrassed by a doctor years ago when she asked what could be done about her ankles, and he snorted and told her to lose weight. She just recently (after much nagging on my part) asked for a 'disabled parking' tag for her car.

There are so many things that she just doesn't do anymore because she can't walk that far and doesn't want to use a wheelchair or inconvenience others. She misses out on so much, especially time with her kids and grandkids! I would love it if she would use an ECV and go to Disney, but she wouldn't even consider it.

 

[Alex2kMommy]

I'm so glad you are going to use an ECV at Disney! My mom is overweight and has bad ankles, and can barely make it through the grocery store. She was embarrassed by a doctor years ago when she asked what could be done about her ankles, and he snorted and told her to lose weight. She just recently (after much nagging on my part) asked for a 'disabled parking' tag for her car.

There are so many things that she just doesn't do anymore because she can't walk that far and doesn't want to use a wheelchair or inconvenience others. She misses out on so much, especially time with her kids and grandkids! I would love it if she would use an ECV and go to Disney, but she wouldn't even consider it.

YOU, on the other hand, are going to have a great time with your family, and they will be so happy that you are with them and able to enjoy yourself, too!

 

[angelbaby29871]

i agree with poohbear7. it makes it easier and more comfortable to get round the world. i can get up and move around also and have heard some rude comments thrown at me but i just ignore them now. i have my reasons for using an ecv and its non of their business. i also have arthritus as well and its hard to get around sometimes especially on a holiday to wdw with your family. rent your ecv, have a great holiday and ignore those people ignorant enough to give you dirty looks and hurtful comments. Have a great vacation

 

[spiceycat]

mother can barely walk at all and she still claims she is not disability - she just has a problem walking.....

anyway my opinion of those people is they are just jealous. You had the far sight and the ability to get a ECV and they didn't....

all the WDW resorts have free wheelchairs - if you would rather do a wheelchair.

mother hates ECV, scooters and anything else powered,... so she has to be pushed....

so be sure and try out one first - before you rent one. some people can't (how about won't) learn to use one.

oh I am horrible today.

 

[Cheshire Figment]

Anita, welcome to disABILTIES!

I remember the first time I used an ECV at WDW. Judy told me it was a great relief for her since I did not have to stop every few hundred feet.

To really set your mind at ease, please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are travelling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[poohbear7]

You said it very well Cheshire Figment I totally agree.

 

[schlepsnort]

I'm 30 but have had RA all my life. I've had both hips replaced and my rt. ankle fused. I still have issues with my knees and other joints. I had a handicapped sticker that I used before my hips were done. I was actually verbally attacked by two senior citizens at the mall when they saw me park in the handicapped spot. I tried to explain my RA and was screamed at and was called many unkind names, I was only 18 at the time and walked with an obvious limp. They, like so many others assumed that because of my age there was no way I could be arthritic. Funny, I never knew arthritis came with an age requirement...
So anyway, I used to be rather timid and apologetic about not being "normal" and doing what is expected of my age group. I got tired of the looks and the sniping so I got rather in your face about it. Typically if someone shoots me a look I will shoot them one back and point to one of my more obvious scars (there are several) or a rather largely swollen joint that noone can deny, that's not normal and painful looking. And now I have a healthy collection of Arthritis related t-shirts that I've gotten from my own concoction or from doing arthritis walks to raise funds. I wear those when we go out to a place like WDW or even local fairs/amusement parks. That tends to cut down on the dirty looks and nasty comments.
My limp is even more noticeable now days and I tend to have tunnel vision just concentrating on getting to where I want to be and ignoring those around me.
I don't know if I will rent a chair while we are at the parks. We are only spending one day at MK and it's our last day so I might just go whole hog and take prednisone with me to help stave off the pain for that day. I haven't decided. My DH is very careful about suggesting a chair or ECV to me because he knows that I have a hard time accepting it as well. I had foot surgery about a year ago and I was so bitterly angry about using an ECV just to go grocery shopping but I had to do it. Otherwise DH would totally blow the grocery budget and we'd be eating all kinds of junk food! But honestly, if it starts getting too painful or all of my breaks start impeding on my kids having fun then I will break down and get an ECV and anyone who doesn't like it can stuff it in my opinion. Tolerance shouldn't be saved just for different ethnicities, it should also be for those of different abilities.
ok, off of my soap box now. After dealing with it for 30 years it's still a hot button topic for me.
Good luck, don't feel guilty, and stick your tongue out at those who make comments. It's not like you didn't have to wait any less time for the ride and they are just jealous of you anyway, who wouldn't like to ride around and save their legs?

 

[Schmeck]

all the WDW resorts have free wheelchairs - if you would rather do a wheelchair.

These resort wheelchairs are first-come, first-served - can't be reserved in advance, etc, and may be all in use at the time, so I wouldn't depend on getting one. It might be better to rent one from an offsite company if you want a wheelchair the entire trip.

 

[Biscuitsmom31]

I've got RA too. My plan is to get a cortisone shot a week before we leave. I'm hoping that will get me through the trip.

 

[schlepsnort]

Yep, as much as it HURTS to get it it is so worth it when you do! I think I'll probably need one for my knee before we go. At least my rheumy usually sprays the beejesus out of the area for the injection with freezing spray so I don't feel it as much. I had to get several shots during my pregnancy into my hip thanks to bursitis. So not pleasant but afterwards I got weeks of relief.

I'm going the cortisone, Enbrel injection a day before we leave, and then bringing back up prednisone, motrin, and extra strength tylenol. At night at the resort I plan on soaking my 'old' body in a hot bath tub with muscle relaxing salts and then rubbing ben gay on anything that might possibly hurt.

And again, if I think I'm slowing the group down, I will get an ECV. I want memories of WDW, not of hurting and where I had to sit it out!

 

[sleepingbeautymama]

I still get that niggly feeling in my tummy that I have to use a ECV to get around. I know I need to accept the fact but it's hard.

Hi, I know how you feel. I am also trying to accept the fact that I will have to rent an ECV. I guess it's so hard because I don't want to be disabled and I feel like I'm too young to be disabled (in my 30s). I have fibro, CFS and PN so it will be virtually impossible for me to make it without an ECV. I don't know why it bothers me but I worry about the stares I may get because I don't look disabled at all. I also feel like I have to worry about my own dh who makes me feel like I should try without one. I think he's going to be more embarrassed than me so it makes it that much harder for me to accept when I can't get him to. I already have a special cushion I have to sit on for one of my disabilities and he's less than thrilled when I take it places. The one thing I keep telling myself though is...should I care about what other people think and it's not like I personally know them anyway and do I want to ruin my dd's first trip to Disney because I'm in so much pain that I end up staying at the resort. Good luck to you and I hope you enjoy your trip.

 

[videogal1]

You should remember, when people are giving you THAT look, that you don't have to be disabled at the level required by the definition of the ADA in order to use an ECV. Good grief, if that were the case, the on- and off-site medical vehicle rental companies would go broke. Many people who do not qualify as disabled under the ADA rent ECVs and wheelchairs to accomodate their medical conditions...a fact that the more judgemental element of WDW vacationers seems to forget.

 

[starflower]

I still get that niggly feeling in my tummy that I have to use a ECV to get around. I know I need to accept the fact but it's hard.

In my every day life I don't use a wheel chair because I can limit the amount of walking I do and if I'm having a bad day I can take it easy. I have Rheumatoid Arthritus and even though I can walk for a good couple of hours there is no way I could walk for an entire day around Disney.

Plus when you are at Disney and you park the ECV and walk to a regular seat or get up to stretch your legs you get those looks or comments from other people that don't see you as having a disability.

Hubby tells me to be sensible and just use the ECV because if I did over do it on my feet I really wouldn't be able to walk at all. The first time I ever went to Disney I refused to be in a wheel chair and walked around for most of the day even though my feet really hurt and by the end of the day I couldn't walk at all. I couldn't even make it from my bed to the bathroom without being carried.

I'm sure others that don't have an obvious disability or can do normal activities for a couple of hours before feeling tired or being in pain must feel funny about having to be in a wheelchair or ECV.

I suppose I'll get over it and make sure my 3 boys have a great time, DS10, DS6, and DS2.

Thanks for listening,

Anita

I'm right there with you Anita. I also have RA and have only recently (this year) developed problems walking and standing. My fiance and I are going to Disney World in a couple of weeks and I'm fighting with myself about getting an ECV. I know I really should do it, but there's such a large part of me that is worried about all the things you mentioned, as well as a part of me that feels so helpless and frustrated at having to use an ECV at all. I have arch and ankle braces, and I'm tempted to use them for a half day at one of the parks before trying to take on a full day.

-Joie

 

[Cheshire Figment]

I would suggest you carefully read my comment #7 above!

So you start off in the morning and then get into pain. Earlier each day and you feel miserable. Don't worry about what others may say or even how they may look at you, you will never see them again. It is you and the people you travel with that is most important to you.

 

[mikesdisneymom]

I am going to have to rent an ECV myself just to help with all the walking, I have a bad ankle that seems to trip me up and make me stumble just walking thru the house, work, or a store, and also a knee that is losing it's cartilage and will need to be replaced and gives me alot of pain. Last December, on a trip to WDW I had rented a ECV for both my mom and dad, and one day dad felt terrible and decided not to go to the park, what a relief it was to not have to walk on my knee and ankle all day. This up coming trip to help me with all the pain I will go thru, I will rent an ECV just to help me get around, have decided that I can stand in the line, just need help with the walking part.

 

[bairdbeth]

Rent an ECV. A couple of years ago I re-injured my back just before our trip to WDW. My doctor said I could only go if I got a wheelchair or ECV. My DD was only 7 or 8 so I rented an ECV. I am very pooh sized and knew I would get stares. It really worried me, but I came to this forum and was reassured all would be well. I did get looks and comments as I parked and walked into rides, but I soon didn't care. I did not suffer from the extreme back pain that walking long distances caused. We went at a slow pace and my DD says that trip is one of her favorite trips. It was a hard decision, but I am so glad I made the right one. Get the ECV and forget what others think or say. It is their problem. Enjoy your trip!

 

[hmmchowell]

Don't feel bad!!! No one in their right mind would pay what we have to pay for an ECV at Disney World if they absolutely didn't need it. If I could walk, I would! I used one two years ago on our first family trip to Disney with my DS age 17 and DD age 5. I have severe osteoarthritis of both knees and am overweight. I have walked bunches in my day(used to live in NYC). But now, until I am able to have surgery, I can't stand for more than about 5 minutes because of the pain. An ECV was a godsend. I was able to enjoy our trip and had no problems with anything. Cast members were always very helpful and I don't remember anyone staring any more than the fact that people just sometimes stare. Don't worry. Use your ECV and enjoy your trip. You have a right to be able to have the freedom the ECV provides.

 

[Castillo Mom]

Oh my goodness, I came to the disAbilities board to post about the exact same topic. Last summer my boys and I spent several days at Disneyland. By the the second day I was in pain, but just kept going. By the third day I woke up with severe ankle pain and swelling. I was miserable and finally gave in and rented an ECV. Yes I did get stares once in a while and it made me uncomfortable and self conscious, but there was no way I was going to endure that pain.

I have arthritis in several joints but have pain only every once in a while. The ankle incident was the first time I experienced that much of a problem. I basically wrote it off as maybe having twisted my ankle somehow. Talk about denial. Well, this past February, I was on my feet all day in the kitchen on Super Bowl Sunday since I was hosting a small party at my home. By the end of the evening when I finally got a chance to sit down and rest a while, I couldn't get up due to severe pain and swelling in my ankle. The following morning I couldn't walk for a couple of days thereafter. Now I notice when I walk more than a couple of hours, I begin to have that familiar feeling again.

Next summer we have a 10 day trip booked for WDW. I want to enjoy the parks with my boys and sister, but I'm having a hard time accepting the fact that I'll need to use an ECV. I can really relate to the OP. My plan is to increase my physical activity as much as I can tolerate by beginning a walking program as approved by my MD. I'm not obese but do have some pounds to lose, so maybe that'll help a little although my doctor doesn't think it'll make much of a difference and that as time goes by, my condition will only get worse. I feel like a big cry baby when I realize that some folks out there have much bigger challenges.