Questions about my Disablity

Suellen

DIS Veteran
Joined
Nov 25, 2007
Messages
5,234
Okay.... let's see. We go to Disney lots and lots of times a year. I have no interest in a ECV or a W/C.

I have a somewhat rare form or arthritis that manifests in many different symptoms. Here is a link: http://www.spondylitis.org/about/complications.aspx

We are planning a trip in March/April. All good. Everyone is excited and happy ~ especially me.

Problem is.... I've been really suffering with fatigue, back pain and trouble breathing. Not trouble breathing like something is wrong with my lungs ~ but severe pain in my rib cage.

I really don't feel the need for a wheelchair or ECV because as long as I can sit and rest briefly I can usually let the waves of pain go by. Unfortunately sometimes this can take up to 30 minutes. Fact is ... being in a w/c or on an ECV likely wouldn't help all that much.

Other than lots of breaks any suggestions on how to make the trip enjoyable for everyone? I'm afraid my frequent breaks may burden everyone.


TIA!
 
Sorry to disagree with you, but rent the ECV.

The first time I decided to rent one was an Epcot day. After the day was over, Judy told me it was the best day she had recently at a Park with me as we were not stopping every few minutes for me to rest.

Don't just think about yourself; think about the rest of the group with you having to slow down and/or skip attractions because of your need to rest.
 
I used to fight the ECV but made everyone else miserable I held my family up all day.

The best thing I ever did on our Disney vacations was to rent an ECV in fact I ended up buying my own.

Unless you are going alone not renting an ECV is a disservice to the others in your party
 
Thing is - when the pain hits I wouldn't really be able to drive the scooter either. We'd still have to stop.

It had never been a problem bc the kids needed the break too - but the older they get - the less they need them.

I suppose they could just go ahead and I can meet up with them.
 

I'd suggest renting the Pride Victory 10 from Apple- it's a captain's chair scooter. Do you really want to have to battle spring break/easter crowds for a place to sit when you're hit with a wave of pain? Think of how nice it will be to just be able to drive to a shaded area, have a glass of cool water, and ride the pain out in comfort, with your own personal space, vs sitting on a bench with 4 other sweaty strangers.

The scooter may not help with the pain, but it should help with the fatigue issues. And to be honest, my dad was in extreme pain and exceptionally fatigued, and he was able to drive it quite easily. It saved our trip.
 
The ECv will give you a guaranteed place to sit. You may find those in short supply especially if you are waiting in line.
Have fun!
 
And the scooter has a padded seat. Even if you're lucky enough to find a bench every time you need one in WDW, chances are it won't be padded.
 
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If you're really sure that sitting in an ECV or wheelchair wouldn't help, you might want to look into a rolling walker with a seat. Or, of course, you can use a wheelchair as a walker and only sit when you need to.
 
Thing is - when the pain hits I wouldn't really be able to drive the scooter either.

As in; not a safe option. Results; other mobility aids to reduce the symptoms and still offer a place to rest on the spot. Most commonly used options; wheelchair or a rollator (walker on wheels with a seat on it)

It had never been a problem bc the kids needed the break too - but the older they get - the less they need them.

I suppose they could just go ahead and I can meet up with them.

If you don't want to use certain options that are out there, that is your choice. Not a smart one, IMHO, but it is your right to make one. Which would indeed result in the 2 above being one of few left out options. It's up to you which one you'ld rather do.

One way or the other, you are the one here making the problem bigger than it is. You don't want to use aids that are out there to makes things easier when needed nor do you want to "be a burden" to the kids a.k.a. touring on your pace. Something has to give, you can't have this cake and eat it.


Take it from a daugther of a father with SA amongst others; you'ld be seriously cheating yourself when letting those fears and dogmas rule your Disneytime. We couldn't have cared less for the moments that we'ld break on a long day amusement park. It simply was one of the things that would happen, simply enough because it was parently ordered it will happen. No biggie. Dad wouldn't be able to do certain rides; so it is, no biggie. Just like mom wouldn't do a rollercoaster without being forced. ;) It simply is what it is. Not only was it nothing but logical sence to tour in a way that was doable for all, it was a good IRL lesson in one of the many values they were installing in us; not just focussing on ourselves but also on our loved ones, taking care of loved ones where needed etc. Not once did I feel cheated because of him happening to have SA on such moments. Simply because I wasn't cheated. We'ld be doing things as a family, enjoying them, having a good time, each simply being who the are.


The negatives? Cheated is too big of a word and even a Dad is alowed to be human every once and again ;) but what would stand out negatively? Those few moments where dad would be such a stubbornheaded mule he'ld refuse to come along at all because of his stubborn pigheadedness "I do not use a mobility aid" and alikes. He'ld knew he wouldn't be able to do a whole day in a way he considered it would have to be -for whomever or whatever- and as a coping skill simply stay home. Not only do you miss dad being there, you totally pick up on the mood and reason of why. You pick up on the negative emotions and even if you might not be able to understand them. When he is there you know one is in misery and thus all are in there to some extend, he didn't lead by example. It took him way too long to listen to me (only one in the family he will listen to when it comes to medical stuff as he values my own experiences), docs and physical therapist before he decided to "give into" getting a rollator. Took a lot more pressure before he'ld use it. The result? A large smiling man that outruns others again, walks distances upto 10-20! times more than without, has loads of less pain afterwards and himself grumbles like Grumpy himself that it might've been smarter to have done this sooner. Oh, and let's not forget his much better mood being a nice addition when being out together and no longer having to see him cheat himself out of things or have unneeded pain.

The difference for me was totally made by how he would deal or not deal with things. No biggie for him; no biggie for us. Him making a biggie, being stubborn or feeling misplaced guilt? Bingo; we'ld pick up on it. Those were very few moment when we were young kids, but I can still paint each detail of it. Where as those 99% other moments? Actually actively have to think about "how did he do that and how did we react to it" as it's not an active memory for me. Those active memories consist of my dad simply being dad, being a great one. And after some second; oh yeah, and he already had SA which was why he didn't work that much, visited the hospital so much and couldn't physically do everything with us like some dads.

Another thing to think about; seating. Depending on the exact location of the inflammations/boning up of the chest you can find almost all standard seats found around the parks for both shows and dining to be..... well..... torturous. Having a proper back on a seat makes a huge difference. Same goes for benches (used at many shows) which can be an extra hardship for the chest when coming back into movement after a show -which not all with SA are aware off when not that tuned into what causes their chest aching yet-. With the use of a mobility aid, you can control this and make sure it is a seating that doesn't cause more pain or can even be a reducer. I would aim for usage of your "own" aid when going for this. Simply because you'ld have to try out before to see what comforts and aches your chest area. Doesn't always have to be something you actually own, but could also be a specific type and brand of aid you can rent locally. Read; try out stuff at home way before trip to see what works for you and from then on only rent said type. With onside rental it is almost impossible to do this without it impacting the Disneytime.

Not an option? Next best can be a standard rental but with your own cushion and/or backcushion. Those are less expensive to own and are multifunctional. Can easily be dragged along to for instance a friends house for a party when you know their chairs aren't comfy enough for you.


I might be a bit confrontational, but stop worrying about cheating the kids! Make a choice that suits your needs and wants (and be honest with both ;) ) and go with it. It is what it is, there is nothing wrong with that. In fact; it will result in you and family doing Disney in the most optimal way possible instead of cheating not only the kids but also yourself out of who knows what.
 
Have you spoken with your physician about the recurrent pain, esp. the worsening pain in your rib cage? Perhaps he/she might have some recommendations for you, esp. for any medications you could bring on your trip. Sometimes meds need to be changed or increased when you know you'll need more stamina or are changing your daily routine temporarily. Other than that, I'm with the camp of renting an ECV. Even if you do have to stop, at least you won't wear yourself out by having to walk so far all day. Perhaps by resting you won't have as much sudden pain. IDK about that, but I doubt that using one would make things worse. If you do have to stop, don't worry about holding up the kids. I'm sure they'd rather have their Mom with them enjoying the parks vs. rushing to get on each attraction quickly.
 
Thanks all! Thing is I know I'm heading for an ECV... but I really do enjoy the walking... so I'd rather walk while I can. Will have to think on that more I guess.

I wish the doctors had solutions. I've tried just about everything available. Enbrel, Methotrexate, Naproxen, large amounts of steriods (which do help but are not a long term solution), Celebrex (caused severe nose bleeds). It really is overwhelming and frustrating in its own right.... never mind just on vacation. They say once the fusing is complete the pain will subside.

The rolling chair thing may be a great option actually. I hadn't thought of that one.

I have this feeling my girls would never even notice a few extra breaks and it would really be me noticing it for them. <--Does that even make sense? In my head it does!
 
If you have an ECV you can still walk in WDW as much as you're able. Just park the ECV with the strollers and take the key with you. Then you'll have a cushy seat and/or transport when you're ready for it.
 
If you have an ECV you can still walk in WDW as much as you're able. Just park the ECV with the strollers and take the key with you. Then you'll have a cushy seat and/or transport when you're ready for it.

Probably from reading all the debates on disboards.... but I'm paranoid that people would judge me as a sneaky ecv users who doesn't need it. :headache:

Really this would be the ideal situation for me.
 
I am a newbie to MS and have been struggling with some of these same issues. My wonderful hubby talked me into a rollator walker which I took to the park each day. It worked wonderful!!! I also like to walk and thought a ECV would tie me down too much. Walking took much less effort with the walker and I had a seat whenever I needed it. I could also somewhat wheel myself around if needed while seated. If you like to walk try the Rollator!!!!!
 
Probably from reading all the debates on disboards.... but I'm paranoid that people would judge me as a sneaky ecv users who doesn't need it. :headache:

Really this would be the ideal situation for me.

Who cares. Honestly. Let them judge. We did not have one person say anything to us with my dad on the last trip, and there were times where I was driving the ECV so he could get up and stretch.
 
Probably from reading all the debates on disboards.... but I'm paranoid that people would judge me as a sneaky ecv users who doesn't need it. :headache:

Really this would be the ideal situation for me.

Please don't let those morons on the scooter bashing threads intimidate you from getting an ECV if you need one! I have never had a problem using an ECV at WDW. Everyone has always been kind to me and if they had bigoted views regarding the disabled, they kept them to themselves.
 
As someone who also has Ankylosing Spondylitis, I also fought getting a scooter for years for many of the same reasons you listed. My daughters talked me into using one by explaining how hard it was for them when the pain or fatigue would make me grumpy.

One thing to remember is you can always park the scooter in a 'land' and walk between rides to get some exercise. This will give you the ability to keep up with the family and have more energy throughout the day.
 
As someone who also has Ankylosing Spondylitis, I also fought getting a scooter for years for many of the same reasons you listed. My daughters talked me into using one by explaining how hard it was for them when the pain or fatigue would make me grumpy.

One thing to remember is you can always park the scooter in a 'land' and walk between rides to get some exercise. This will give you the ability to keep up with the family and have more energy throughout the day.

Nice to "meet" you! One of the hidden disabilities that people (even family) don't quite understand. I mean they have empathy for me and understand the pain.... but really I don't think they can honestly understand the total body impact.

I'm seriously considering the scooter for this trip... thinking maybe a couple days in the parks at first. See how it goes.
 
Many of us have hidden disabilities I would guess most fought using an ECV I never wanted to admit I was disabled. I used to make my family wait over and over again so I could sit because of pain. My problem is I can't walk far and I can't sit for long without pain. Even when riding a scooter I have to walk on some rides because if I sit too long I have pain

One day the pain was so bad I was going from bench to bench. I finally gave in and got a scooter. It was the single best thing I ever did for our vacations in fact I now own 2 scooters a heavy duty one that can go all day that we bring to Disney and a light weight one that works great for short local shopping trips.

I have had almost no trouble with people in Disney. My local Walmart is a different story lots of nasty people seem to shop there.

Just try one for a day I bet you will love it
 
Nice to "meet" you! One of the hidden disabilities that people (even family) don't quite understand. I mean they have empathy for me and understand the pain.... but really I don't think they can honestly understand the total body impact.

I'm seriously considering the scooter for this trip... thinking maybe a couple days in the parks at first. See how it goes.

around to the idea of the scooter. Renting off site for a scooter saves you money.

My husband was able to double his time in the parks by using a scooter. You can come and go as you can with the scooter with walking or not.

I have some practical hints that may help. We alternate activities; so, there are rest periods. For example, do a ride and then a show; do a ride and then have a snack; do another ride and see a parade; do still another ride and have a meal. We have found the built in resting periods with shows, parades, fireworks and eating really help with the stamina and so forth.

If you have any advance notice that you are starting to feel the pain coming on then maybe, you have a chance to do something more relaxing right away. The shows go from 20 to 45 minutes and that should help you regain back strength.

I know some families do thrill ride after thrill ride and they leave. There's so much more to Disney than just the thrill rides.

Also, you may have to learn to take a break at the resort mid afternoon. Everyone else can enjoy the pool. You may have to sit out some activities while the others enjoy a ride. You will probably have to pace yourself differently, now.

You can still have enough great moments at Disney without trying to be a commando about it.

Even a little time at the Disney parks is better than none.
 












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