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

[SueM in MN]

I have had someone ask me with my crutches (forearm or canadian type crutches) - "Do you really need those?" I replied, "Nope, they're my antenna to the mother ship!" That guy left me alone real fast.

When someone asked me "What's wrong with you?" I have been known to reply "Nothing has been the same since the aliens abducted me!"

Once a friend of mine, when a stupid/rude person asked her why she was in her wheelchair (she had some rare neurodegenerative disease), she looked down and started screaming "Wheelchair? What wheelchair... Oh no! Oh no! What happened to my legs!"

good attitude

 

[Twilight Terror]

We're off to WDW in 21 days and for the first time I am gonna have to use a wheelchair.

I have recently been diagnosed with a serious heart condition and even though I look 'normal' there is no way I could do WDW without wheels.

I find it very difficult when people stare at me and make comments just because they can't see my disability. I'm learning quickly just to ignore these ignorant people - they could be where I am next week.

I'm off to visit the mouse and have as much fun as I always do

At least we can all go away now, even if it does mean a wheelchair. You certainly couldn't do WDW without your wheels. By lunchtime, people might start mistaking your swollen elephant legs for Dumbo and attach you to the ride! You'll become your favourite ride!! For anyone reading who hasn't worked it out yet, I am allowed to mock - nursetibs is my mummy

Besides, if people become too rude, I might just have to lose control of the wheelchair and run a few of them over... or catch their ankles with the foot plates... you know, accidentally on purpose like...

You know what we need? We need a badge that says something along the lines of "Disability doesn't start and end with a wheelchair!"

 

[NavyMomX2]

OMG!!!! The MOTHER SHIP & ALIEN ABDUCTION references have me cracking up! I LOVE this!!!!! What great responses!

Please, anyone who is hesitant about an ECV or wheelchair, please read the post I just started about my first trip using an ECV. I just returned Monday from POP and I'm SO grateful that I took the advice of wonderful people here.

 

[MummyKat]

Good Luck on your trip Dustyraye.
I have used an ECV the last two times we went to DLR and California Adventures. I have arthritis and had a hip replacement so my daughter convinced me to rent one at the park. It was wonderful!! I know I was able to see, do, experience more by using the ECV. I wouldn't have lasted until closing without it.
I didn't experience any stares, comments or questions from people. However, I did notice that people would walk right in front of me, much like pedestrians walk in front of cars. Even in an ECV it is hard to stop on a dime.
We arrived at the park very early in the day to ensure that we would be able to rent one. I am thankful that Disney has the foresight to provide the ECV's as an option to those who need them. One nice perk is that you and your group will be able to advance through line quickly on most rides.
So Go, Rent, and Have Fun!!

 

[TPCShauna]

OMG, I could have written this thread title myself!

I am coming to terms with the fact that I'll have to get an ECV for our December trip. I had an accident last November and fell on the side of my knee. The fall shredded the cartilage under my knee cap and caused a torn meniscus. I had surgery and it fixed those two issues.

While waiting for surgery, I was having issues with severe swelling. The site of the fall was a massive contusion that was putting pressure on the nerve in the front of my leg right below my knee. The pressure last so long that the nerve died and it now regrowing. It is incredibly painful and feels like someone is burning me with a hot poker. The pain causes me to walk oddly which is causing some cramping and locking in the joint. I'm on a cocktail of medication and have to use a cane to walk even the shortest distances. While I am improving slowly, I have another 6 to 8 months of rehabilitation before I will be truly well.

I have come to terms with the fact that I won't be able to walk around WDW to any extent. I also can't stand for any length of time. Even knowing this, I am so stressed about having to use an ECV because I know people will look at me like I'm a horrible person. I am 31 years old and I'm definitely "pooh-sized". Normally, I'm really healthy with great BP, cholesterol, blood sugar, etc. I just know that people are going to be looking at me judgementally and that really bothers me. I'll still have to use my cane to transfer on rides, walk any distances, etc. but I don't wear a knee brace or anything like that so it looks, in theory, like there is nothing wrong with me.

I am seriously losing sleep over this right now. I feel better knowing others feel the same way.

 

[honugirl]

I think what seriously has sealed the deal for me is the fact that I went to Wal-Mart the other night and used one and for the first time in a long time I was able to just zip around the store and enjoy myself. I wasn't stressing about being too tired to get through the store, etc. Now I'm excited to go to WDW again. I wasn't exactly dreading it, but I was wondering how I was going to do all the things that I loved to do there. Now I'm going to be able to.

 

[SueM in MN]

I think what seriously has sealed the deal for me is the fact that I went to Wal-Mart the other night and used one and for the first time in a long time I was able to just zip around the store and enjoy myself. I wasn't stressing about being too tired to get through the store, etc. Now I'm excited to go to WDW again. I wasn't exactly dreading it, but I was wondering how I was going to do all the things that I loved to do there. Now I'm going to be able to.

 

[KPeveler]

Whenever people give me a hard time about using my wheelchair, either at disney or elsewhere, i just say "There is a difference between surviving a day, and enjoying it!" Using a wc/ecv for a week won't (generally) make anyone's health any worse (i.e. lead to major muscle atrophy or other complication of long-term wheelchair use), so do what you need to ENJOY your day, and pooh on anyone who thinks you should suffer just so you fit their ideal of "normal."

I wasn't normal before I got sick, and its not looking likely I will become normal anytime soon!

 

[PigletsPal2]

Late post: I used an ECV late in the day on one trip to EPCOT (severe arthritis in hips and knees) but I almost always use the handicapped bathroom stalls (need the higher seat and bars to pull up). If there's someone in a wheelchair or ECV, I'll wait; otherwise, I go on in. The one time someone made a comment, I said, "first of all, you don't know what my handicap might be, and second of all, it's none of your business!" That shut her up, and several women in line (there's ALWAYS a line ) silently applauded.

Queen Colleen

 

[nursetibs]

Late post: I used an ECV late in the day on one trip to EPCOT (severe arthritis in hips and knees) but I almost always use the handicapped bathroom stalls (need the higher seat and bars to pull up). If there's someone in a wheelchair or ECV, I'll wait; otherwise, I go on in. The one time someone made a comment, I said, "first of all, you don't know what my handicap might be, and second of all, it's none of your business!" That shut her up, and several women in line (there's ALWAYS a line ) silently applauded.

Queen Colleen

Well done and

 

[Explodo]

I'm readin these posts and thinking to myself...These people have all delt with what I'm coming to grips with right now. I'm a Erlichia Survivor. Erlichia is a tick disease simlar to lymes...but has subtlely different effects. Most of my joints have been impacted in some manner...My knees hips, ankles feet all hurt so badly after long term exertion, that it nearly makes me immobile. The medical community tells me I may have these issues for the rest of my life...So for the last several months I've been in denial. Pretending nothing was wrong...not letting my family see me hurt. It finally got to the point where it can't be hidden. So then I was embarrassed. I want my wife and kids to see me as a hale, indestructable Father...It's not working out like that so I got mad...then My lovely wife suggests we go to disney to relax and enjoy some magic as a couple. She's a peach

We're going in about 7 days...

Which leads to this thread...If we are to enjoy the world in any fashion, I'm going to have to limit walking...at least to some manageable degree...which means I'm going to have to get a wheelchair or some kind of mobility help...Now I'm embarrassed again. If I try to john wayne myself through it, by day 2 I'll be immobile. If I use the cart...I can most likely enjoy the world for the entire trip.

I guess I'm having trouble accepting this new reality...you folks make it somewhat more acceptable.

Thanks.

 

[danalee]

Here is my 2 cents, get a wheelchair of somekind and use it the entire time you are there!
My mom needs one and she uses it the entire trip, on certain rides she will transfer and others that are able she stays in her chair.

My mom had a stroke a few years back so walking and breathing was an issue, now she has arthritis in her hip and knee. So even the little walking she does in the day, transfering onto rides, potty breaks and what have you she is tuckered out by days end.
No way would she make it even one day with out that chair, make yourself comfortable, its your vacation too you deserve to happy and comfortable just as much as anyone else.
Oh and on my mom's first trip with her chair she kept saying "I'm gonna be embarassed" "I feel dumb & I'll try and walk" well three trips later, she is soooo thankful for her chair and that she can go somewhere that is so "wheelchair" friendly!

Get the chair my friend and go and fully enjoy your vacation!

 

[Cheshire Figment]

Hi Explodo and to disABILITIES!

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 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!

 

[BroganMc]

Which leads to this thread...If we are to enjoy the world in any fashion, I'm going to have to limit walking...at least to some manageable degree...which means I'm going to have to get a wheelchair or some kind of mobility help...Now I'm embarrassed again. If I try to john wayne myself through it, by day 2 I'll be immobile. If I use the cart...I can most likely enjoy the world for the entire trip.

I guess I'm having trouble accepting this new reality...you folks make it somewhat more acceptable.

Thanks.

The secret to John Wayne's toughness is that he was an actor. In the movies, where everything is make-believe, carefully planned and never as dangerous or hard as it seems it's easy to appear superhuman tough. Reality is far more humbling.

I grew up with JRA from age 2. All throughout my childhood the perfectly healthy adults around me kept telling me to just tough it out and not give in to the pain. Using any accommodation was seen as a silent failure. I went through 12 years of primary school and then college with that philosophy drummed into my head.

It wasn't until I reached and embraced adulthood that I grew a brain and accepted the physical limits God gave me. Getting a power wheelchair was the first smart thing I ever did. Now it's not a matter of how much energy I have to go out but how much energy my companions have to keep up with me.

Someone asked me the other day if I was given a hard time or noticed stares. Truth is before I got a powerchair I feared what other people thought of me more than anything. Once I used a powerchair I was so busy enjoying my painless freedom I never noticed a thing. All I really notice are the angels who see me struggling to reach something and offer help.

Well yeah, I also notice the lacking amount of handicapped bathrooms and parking spaces. I suppose there are more of us "special needs" folks around than any of the "normal" folk thought.

 

[Explodo]

Thanks Ya'll.

 

[motherhen17404]

Now it's not a matter of how much energy I have to go out but how much energy my companions have to keep up with me.

I am glad you said that. I too was having problems dealing with the fact that I had to use a ECV. I have Fibro and my Dr. told me to get one for our Disney trip last Nov. I really worried how people would look at me. Then after thinking about it, it hit me. This is my trip, not any elses. So what if people look at me when I parked the ECV and walked onto a ride. They have no idea what level of pain I was in, or how using the ECV kept me from pain. It was one of our best trips to WDW. Instead of my DS talking about how much pain his mother was in, now he talks about how much more we could do because of the ECV. So the above statement was true for us, my DH and DS had trouble keeping up with me.

The bottom line is, if you think you need a ECV, then you do need it and don't let others dictate how you will enjoy your trip.

 

[HonnyDipp]

I have a muscle disease. A year ago I was told I would never walk again. But I proved them all wrong. I'm walking! Slowly but I get around. I can't do 100 feet without resting so I knew when we started planning for our WDW trip I needed to get an ECV. I have a power chair for home, and I'm used to it, but I have never taken it outside. My doctor told me that renting an ECV would be good for me and my family. We have paid good money for this trip, and I'm determined to keep my head up and enjoy myself!

 

[SueM in MN]

I have a power chair for home, and I'm used to it, but I have never taken it outside.

Just so you are aware, if you would rather rent a power wheelchair, there are some places that will rent power wheelchairs. Most will only rent them if someone has experience, but you would fit that.

If you look in post #2 of the disABILITIES FAQs thread, you will find several companies listed that you can contact. Walker, Care and Buena Vista rent power wheelchairs. They also rent ECVs, along with a number of other companies listed in that thread.
The disABILITIES FAQs thread is near the top of the thread list on this board (there is also a link to it in my signature).

 

[OneLittleSpark]

I'm readin these posts and thinking to myself...These people have all delt with what I'm coming to grips with right now. I'm a Erlichia Survivor. Erlichia is a tick disease simlar to lymes...but has subtlely different effects. Most of my joints have been impacted in some manner...My knees hips, ankles feet all hurt so badly after long term exertion, that it nearly makes me immobile. The medical community tells me I may have these issues for the rest of my life...So for the last several months I've been in denial. Pretending nothing was wrong...not letting my family see me hurt. It finally got to the point where it can't be hidden. So then I was embarrassed. I want my wife and kids to see me as a hale, indestructable Father...It's not working out like that so I got mad...then My lovely wife suggests we go to disney to relax and enjoy some magic as a couple. She's a peach

We're going in about 7 days...

Which leads to this thread...If we are to enjoy the world in any fashion, I'm going to have to limit walking...at least to some manageable degree...which means I'm going to have to get a wheelchair or some kind of mobility help...Now I'm embarrassed again. If I try to john wayne myself through it, by day 2 I'll be immobile. If I use the cart...I can most likely enjoy the world for the entire trip.

I guess I'm having trouble accepting this new reality...you folks make it somewhat more acceptable.

Thanks.

Hey there. You've had plenty of encouragement already, but I just wanted to throw in my happy thoughts and good wishes. I know how hard it is to accept new limitations your body throws at you, I'm 22 and have been in a wheelchair part time for a couple pf years now. In the end, you have to do whatever will give you the fullest, happiest life, and if that means renting a set of wheels for your holiday, so be it.

Please don't think that using a wheelchair will make you seem weaker; it won't it will just make your holiday more fun. Your wife and kids love you, and they want to be able to enjoy the holiday with you, not spend the whole time worrying about how much you're hurting. You said you want to seem strong for your wife and kids; well I think the strongest thing you can do right now is to accept the help you need . It can be one of the hardest lessons to learn in life, but also one of the most important: nobody is a rock (whatever Simon and Garfunkel may think ), and we all need help from time to time. Hope you guys have a great, pain-free, stress-free, fun-filled holiday!

I am glad you said that. I too was having problems dealing with the fact that I had to use a ECV. I have Fibro and my Dr. told me to get one for our Disney trip last Nov. I really worried how people would look at me. Then after thinking about it, it hit me. This is my trip, not any elses. So what if people look at me when I parked the ECV and walked onto a ride. They have no idea what level of pain I was in, or how using the ECV kept me from pain. It was one of our best trips to WDW. Instead of my DS talking about how much pain his mother was in, now he talks about how much more we could do because of the ECV. So the above statement was true for us, my DH and DS had trouble keeping up with me.

The bottom line is, if you think you need a ECV, then you do need it and don't let others dictate how you will enjoy your trip.

hi! Just wanted to say, I'm another Fibromite and love your attitude to the ECV . There will always be idiots in the world to disapprove of just about anything you choose to do in life, so worrying about them will just stop you doing what you want! Also, with a wheelchair, you get to see all the confused faces when you stand up to go on a ride (yes, I'm one of these nutcases who takes pleasure in confusing random strangers ).

For all you guys out there, battling with invisible illnesses, you might want to take a look at butyoudontlooksick.com. The lovely people on the forum there have really helped me with so many issues, including accepting the use of mobility aids, and I like to pass the link on to others in the hope that it may help them too.

Hugs to all

 

[Mom2Stitchlvrs]

Use the ECV. I have osteo arthritis and with ASM this trip has been a disaster without an ECV. I didn't want the inconvenience of one. I was doing well before we came but ended up with the last building 3rd floor. With the construction we need to walk all the way around the building to get to the bus. 3 days into the trip we had to rent a car. I can't even walk to the main building anymore after ending up standing on the bus twice. Staying at Music the driver said there would only be standing room on the next bus too so I had 2 choices stand or wait for an hour and possibly get a seat on the bus or get on and stand. I'm done for the rest of this trip now that the pain has flared. Such a waste. ECV's are a PITA but being ready to go home after 3 days is far worse.

Do not expect people to get out of the handicapped seats, especially if you aren't agressive about requesting them and even then people will remain seated. The bus driver said to use the handicapped line and preboard. I so hate to call myself disabled, but the other choice is to stay home.