How can I convince my mother to use an ECV?

[DaksKid]

Hello there, my family is planning a trip to Disneyland later this year. My mother has a hard time getting around because she has Rheumatoid Arthritis (which affects her toes and makes it hard to walk without a lot of pain) and Lupus. She has a very hard time with both walking long distances and the sun, which is a common problem with lupus. We keep suggesting an ECV and she agrees that it would be helpful. What she can't get past is all the stuff she has read on the DIS about people who use the ECVs. She's overweight and because of that she believes that people will judge her as using an ECV because she is "fat and lazy." She's not THAT overweight, but she is really paranoid about people judging her. How can I convince her to not think about what others may think and do what is best for HER?

I hate that judgmental people have made her feel she doesn't have a right to use tools to help her disability. It just burns me up because she agrees that it would be a good thing for her and the ONLY thing that prevents her from using one is that she doesn't wish to be judged. My mom is young and has a right to live and be happy even if it means using an ECV. I tell her it's not her fault that she got sick, but she just can't get past some of the nasty comments she has read. Any suggestions?

 

[ireland_nicole]

I'm sure Cheshire Figment will respond soon, and he does a great job of helping people with this issue. In the meantime, ask her if the opinion of a couple of jerks she doesn't know and will probably never see again is worth ruining her vacation (and yours) over. I know that looking at things from that perspective helped me to make better decisions on ECV use for myself (yes, I use one now, and I'm only 35.) Anyway, have a magical trip!

 

[Cheshire Figment]

Hi and to disABILITIES!

Please ask 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 traveling 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!

 

[DaksKid]

I'm sure Cheshire Figment will respond soon, and he does a great job of helping people with this issue. In the meantime, ask her if the opinion of a couple of jerks she doesn't know and will probably never see again is worth ruining her vacation (and yours) over. I know that looking at things from that perspective helped me to make better decisions on ECV use for myself (yes, I use one now, and I'm only 35.) Anyway, have a magical trip!

My mom will be 38 for our trip. We've been going to Disneyland every year since last year. She was too sick to go. I think it disappointed her more than any of us as she loves Disneyland so much. She doesn't want her health to stop another trip! I just know if she rents one she'll feel so much better for not having to go through a lot of pain that she won't care what people say! She LOVES Disneyland and I love the time I spend with my mom there, so I just want to find a way to make this easier for her. She says that in particular, because she *can* walk, people will assume she is just lazy. They'll see her go from the ECV to the ride and make their judgments. I jokingly suggested that she get a t-shirt and have it printed with "I have lupus and RA" just so people will realize she does have health problems. She laughed about it and thought it would be funny to do that.

Anyway, she is trying to lose weight, but it's hard when you're on prednisone. Her newer meds make her sick all the time though, so perhaps she'll lose weight before we go and feel less self-conscious about it. But it just burns me up that she feels she "isn't allowed to be sick" because of her freakin' weight!

Thank you for your response. I agree with what you wrote 100%. I see no point in allowing a few jerks and their judgments ruining her vacation. And I certainly plan to show her this thread later on. I hope it'll make her feel better about taking care of herself and doing what she needs to do! Thank you!

 

[DaksKid]

Hi and to disABILITIES!

Please ask 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 traveling 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!

Wow! That about sums it all up, doesn't it? Thank you for this perspective! Like I said, I'll be sharing this with mom later on. These are words full of wisdom. Thank you!

 

[ireland_nicole]

Go to cafepress.com they have a ton of t-shirts just like that, so you're mom isn't the first to want one.
Nicole

 

[SeaSpray]

I just returned from WDW 2 days ago and I used an ECV. I basically have a love/hate relationship with it. LOL I love it because it allows me to enjoy Disney World, because without it I'd get about 5-10 minutes worth of walking in and then have to leave. I hate it because it really is a nuisance as compared to just being able to walk.

Having said that, I have had to accept the idea that I can no longer "just walk" around the mall, a large grocery story, or most of all, Disney World.

I LOVE Disney World. I am fortunate enough to be able to go once or twice a year. There's no way that my RA or fibromyalgia or plantar fasciitis is going to keep me from going. At this point in my life (and possibly for the rest of my life) using an ECV is the ONLY way I can go.

We did all 4 parks on this last trip and except for being scared of parallel parking the thing on the busses it was quite an easy time using the ECV There were times when I needed to get up and walk for a few minutes due to joint stiffening, so those times I asked my DH to drive it for me. I didn't even look around to see if anyone noticed us changing places because I knew there might be some people who would think that we were just "joy riding" with an ECV. I don't care about those people. And I don't care about the people who see me and don't see any visible disabilities, or people who might think I should walk because I "could use the exercise" (I'm overweight too!).

I'm glad that you plan to read this thread to your mom to help her to see that she shouldn't worry about what other people think. Honestly, I think that 98% of the people at WDW are there having their own good times and that they don't bother to look at or judge others.

I hope that you all go and have a great time!!

 

[DaksKid]

Go to cafepress.com they have a ton of t-shirts just like that, so you're mom isn't the first to want one.
Nicole

Wow! There are a billion t-shirts there! I like this one the best so far! It says:

Be kinder
than necessary
for everyone you
meet is fighting
some kind of battle

 

[ireland_nicole]

Glad you like em! I'm not allowed to go there very often, though... I spend way too much

 

[DaksKid]

Glad you like em! I'm not allowed to go there very often, though... I spend way too much

I can't tear myself away! There are so many and for every issue that could come up. She could get a new one for each day. They have shirts for lupus, RA, Sjogren's Syndrome, and Fibromyalgia. She has all that (and a few others). Her immune system doesn't like her much at all. Anyway, I really think those t-shirts may help her. It's too bad she feels she needs to do that though. People really can suck at times, can't they?

I think that the people who judge don't realize that being sick slows you down and makes it easier to gain weight. My mom used to be really active and thin, but the sicker she got, the less active and she started to gain. And that one drug she takes called prednisone also made her gain. I don't think people realize how awful that can be and how hard it is to focus on losing weight when just getting through the day can be a chore.

Anyway, I appreciate everybody's stories and input. I hope she will see that she really can do what she needs to do!

 

[KPeveler]

something i have heard people use before is this:

pick a well-known place about 3 miles from where she lives. tell her you're going to take a walk there and back, and when she looks at you like you have three heads, tell her that you walk about 6 miles a day at disney (although sometimes as many as 10). she would be miserable by the end of day 1, and the rest of you would be miserable because you would either have to pay a fortune for her to sit in a hotel room (tickets are expensive for her to be in pain in a hotel room), or have to stop and wait with her every time she gets tired. Tell her that it is more important she enjoy every minute of the trip than worry about what some ignorant people, who she doesnt even know, think!

i am 23 and look perfectly healthy, and when i stand up to get on a ride I am sure i get plenty of looks. but quite frankly, I don't care what other people think. i know i am sick, my family knows, and everyone else can just bugger off.

I tell people "It's the Happiest FREAKIN' Place on Earth, so POOH on the rest of the world."

 

[minkydog]

pick a well-known place about 3 miles from where she lives. tell her you're going to take a walk there and back, and when she looks at you like you have three heads, tell her that you walk about 6 miles a day at disney (although sometimes as many as 10). she would be miserable by the end of day 1, and the rest of you would be miserable because you would either have to pay a fortune for her to sit in a hotel room (tickets are expensive for her to be in pain in a hotel room), or have to stop and wait with her every time she gets tired. Tell her that it is more important she enjoy every minute of the trip than worry about what some ignorant people, who she doesnt even know, think!

Good idea! Most people really have no idea how much walking is involved. They think "oh, I'll just rest when I need to". My DH is like that. He's only 51, but he has been disabled for 5years. He HATES the fact that he needs an ECV--believe me, he would rather walk. He looks perfectly fine, trim and young. But the last time we went we made it about as far as the castle when he turned to me and said "thank you for making me do this. I would never have been able to tolerate the walking." Not only would he not have tolerated the walking, he would have had to sit down every 10 minutes and rest; about an hour of that and I would have been really irritated. Even *with* the ECV, his stamina only lasted about 3-4 hrs--can you imagine if he was walking? Sometimes my DH has to be reminded that when he pushes himself to go harder & farther than he really can, he actually causes more trouble and work for the rest of us.

I know you have to walk gently here and you don't want to lay down any ultimatums, but I think you will have to speak frankly with your mother. She doesn't need to wear a shirt that tells people what's wrong. It's nobody's business. Tell her you're getting the ECV so she won't have to feel like she is burdening her family. Then do it. Rent one from an off-site company so you can have it 24/7. I predict it will take her less than one day to change her mind about it.

 

[merryweather20]

As everyone else has mentioned the sort of people that make the comments you've read are all complete morons. I have RA as well and I use a wheel-chair since joint damage has locked my knees at about 90 degrees. I actually had someone come up to me in the mall and tell me I shouldn't be using my wheel-chair. Hmmm I wouldn't be able to go to work, or grocery shop or anything then... As she continued to rant I realized that she thought that since I can move my legs, I could walk. Some people are just that stupid.

You and your Mom will more than likely meet some of these people, but more than likely you'll be so happy to be out enjoying Disney and not in pain.

 

[mechurchlady]

Tell that it aint nobody's business why a person is in an ECV or wheelchair. We waste so much time worrying about what others may think when really mot people do not notice.

If someone sees this wide load of about 280 pounds in an ECV and thinks it is because I am lazy then they get a piece of my mind. I will give them a litany of illness I have from the back problems, arthritis, bad knees and you name it. I am fat but how about you make it for me to go jogging 10 miles a day. That or I ignore them. You have to get an attitude and learn to have an acid tongue, a honey sweet reply, ignore people or something but never let people stop you from doing things that are needed like an ECV.

If someone thinks they do not need an ECV then show them videos of the parks and how far the walk is. Ask them if they can make it to the grocery store, in my case, and if they say no then tell them that the parks require walking as far as the store and back 3 times.

 

[Luv Bunnies]

We were planning a trip to Disneyland for last August. My mom really wanted to go with us but my dad has trouble walking for very long (diabetes and soreness from where they took the veins in his legs for his heart bypass). We proposed the idea of getting him an ECV and he kept refusing, saying he would stay in the hotel room and read while my mom went with us to the parks. After my boys told him they'd like him to come, he gave in and agreed to the ECV. He was so happy that he did. He was able to go everywhere in the parks and experience what he wanted to. He's not a big ride guy. He rode the train at DL and went on Soarin' since he'd never been on it before. He passed on everything else and was happy to park in the shade wait for us. He commented after the trip that he felt refreshed when the rest of us were dead tired! He was a little worried about the people around him but he quickly discovered the best way to drive. He went fairly slowly and watched out for people crossing in front of him. If anyone tried to jump too close in front, he would just stop and let them go. He drove a patrol car for 25 years so he tends to be very aware of what's going on around him (even though he was 81 at the time of the trip!). In very crowded areas, My DH and would walk directly in front of him to help carve out a path. He would just drive behind us at whatever speed we were walking.

If you want to get an ECV at Disneyland, I have some advice for you. Rent one from an off-site company and have it delivered directly to your hotel. We rented from Deckert's Medical Supply. It was waiting in the lobby when we arrived and my dad was able to take it directly to his room and charge it up. We were staying at a hotel on Harbor Blvd right by the crosswalk to the front entrance. But, my dad said the walk to the front gates to rent an ECV would have been too much for him. He was able to ride all the way from the hotel and back. He was also able to ride all the way to the end of Downtown Disney and back. If you rent in the parks, you can't take it outside of the gates.

I hope your mom agrees to get an ECV. She and you will have a wonderful and carefree trip!

 

[DaksKid]

I can't thank everybody enough for all your replies. We have read through all your comments as a family and we have figured out a solution that is perfect! See, one issue my mom has is that she is not totally incapable of walking and in fact likes to walk when she isn't too tired. She doesn't want to be tied to the ECV the entire day. If she feels well, she wants to walk. On cooler, cloudy days, she can go much longer without feeling tired or sick.

Well, the last time we were at Disney, my grandmother did use an ECV. She had recently had double need replacement surgery (like 10 weeks before our trip!) so she used one the entire time. Well, my grandmother is much better with her knees, but she has several health issues besides that (arthritis in her back) though not as serious as my mother's. She, too, would benefit from using an ECV part time! So guess what? They are going to SHARE one! Isn't that a great idea? My mom can rest when she needs to and my grandmother can rest when she needs to. Perfect! They both read your comments and saw a lot of good arguments in favor of using it. In particular, the realization of how much walking it really is made them look at each other and . Yeah, they definitely need to take breaks and take care of themselves and they realize that now. I am happy knowing my mother will have a nice time. I hate seeing her in pain. I don't mind going slower for my mom and grandma, but I want THEM to be comfortable because it is their vacation as well. So I'm happy now and I think this is the perfect solution!

Thank you all so much for helping us come to this. Now I can't wait for vacation time! No more worries!

My mom and grandma asked me to thank you guys for them as well.