Joint Pain/Exhaustion..should I just cancel grand gathering?

[tictac]

We started planning a "grand gathering" and yes I'm the obsessive Disney planner . Then, in Jan. I started to develop terrible joint pain everywhere. After too many test, the rheumatologist believes it could be one a couple of things A) joint pain due to my kidney transplant which would be very very rare B) vasculitis coming back and attacking my joints this time or C) Rheumatoid Arthritis. This is really bumming me out because I'm supposed to plan this terrific vacation for everyone and now how am I going to it. I get tired (well exhausted) just getting ready, I can't imagine walking around at Disney telling everyone where to go! Aside from all of my regular kidney transplant meds I am new meds for the joint pain. They seem to be working but the whole new set of side effects is what I'm having trouble dealing with. The trip is not until September, but should I just cancel? Thank You for any advice

 

[Cheshire Figment]

Hi and to disABILITIES!

I would suggest you start off by clicking on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information, including in Post #2 where people rent ECVs.

Or, if you want an easier route, click on the link in my signature.

Then 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!

 

[tictac]

thank you for your reply Figment,
but is it foolish of me to not want to use a wheelchair? I am just thinking of the looks I would get. I mean I look like a healthy young girl, would cast members or people just be thinking "here is another one" . Then I have a question could I rent one and then park it and get in line regularly with everyone else? Hopefully this would keep me from getting too tired.

 

[merryweather20]

thank you for your reply Figment,
but is it foolish of me to not want to use a wheelchair? I am just thinking of the looks I would get. I mean I look like a healthy young girl, would cast members or people just be thinking "here is another one" . Then I have a question could I rent one and then park it and get in line regularly with everyone else? Hopefully this would keep me from getting too tired.

I'm 28 and unless someone looks really closely to see how swollen my knuckels are, I probably look pretty healthy too. Whether it was a cane, crutches, or finally my wheel-chair its always been worth it, to have the freedom from pain, or the security in knowing I wouldn't get "stuck" somewhere far away from my car and be in too much pain to get back.

You will most definitely run into people who assume things about you but everyone one of them is an idiot, forget them and avoid them.

I suggest taking the wheel-chair in with you to the lines. There will be nowhere to sit, and many of the lines are deceptively long, and even change in length and configuration. You can always get out for a short walk to stretch in or out of the line, but having it with you will keep you from getting stuck.

 

[Timon-n-Pumbaa Fan]

To look at me, you would think, oh it's just another fat chick sitting on her behind when she should be up walking around and maybe not staying such a fat chick. However, I have a couple of issues that no one really sees or knows about. One is that no matter when I have ever done a lot of walking, WDW, March of Dimes Walk, or any walking/standing for more than 4 or 5 hours straight, I get the worst blisters on my feet. It's so bad that after half a day at any theme park, I have such bad blisters that I can't hardly walk at all. So, initially, that was why I rented an ECV. Later on, I had a knee injury that didn't fully rehab that left me with decreased stamina because after an hour or so of limping along, my back spasms and it's all downhill from there. Add to all of this an infection that almost killed me and could have, but thankfully didn't cost me my leg, however, now I can't stand on the leg for more than 30 minutes without increased swelling and redness. With the swelling comes pain and that's no fun at all.

Over the years, I have rented an ECV many times at WDW. I do try when I can to walk through the ride lines, but it's not always possible. Yes, I realize that there are a lot of people that just see yet another lard butt sitting on a scooter, but they have no idea how much of the lard butt was born out of being in too much pain to do much about it. Now, I can either focus on that or I can go and enjoy myself. Life's too darn short to be bothered by the ignorant/stupid assumptions of others.

Go, have a blast. It's WDW and you, even on an ECV, can get your pixie dust fix.

 

[tictac]

Thank you for your kind words..they really touched my heart
I have been ill since I was 12, and not being "normal" has always bothered me a bit. ( I have always had random catheters from neck or whatnot)The wheelchair would only contribute to that, but you guys make the best point of all I will be ther to enjoy myself and most of all the 18 people I am "guiding" and planning for I have already made them their 1st edition of a we are going disney world newsletter !! Can you tell i'm an overplanner? Thanks Again Im so excited

 

[Cheshire Figment]

Thank you for your kind words..they really touched my heart
I have been ill since I was 12, and not being "normal" has always bothered me a bit. ( I have always had random catheters from neck or whatnot)The wheelchair would only contribute to that, but you guys make the best point of all I will be there to enjoy myself and most of all the 18 people I am "guiding" and planning for I have already made them their 1st edition of a We Are Going To Disney World newsletter !! Can you tell I'm an overplanner? Thanks Again I'm so excited

An additional item. You are one of many who over the years many of us in this forum have had to beat over the head to use a wheelchair or ECV at WDW. The response afterwards has always been "Why didn't I do this earlier" or "Why was I scared to do this". It is your vacation and you should be able to enjoy it.

The first time I decided to use an ECV at Epcot my wife said it was the best trip she had in years since we did not have to stop every 15 minutes or so because I was in pain and/or exhausted. Just remember it is you and your family that is there to enjoy the Parks, and don't worry about others (just don't run them over unless it is really necessary).

 

[Piper]

Thank you for your kind words..they really touched my heart
I have been ill since I was 12, and not being "normal" has always bothered me a bit. ( I have always had random catheters from neck or whatnot)The wheelchair would only contribute to that, but you guys make the best point of all I will be ther to enjoy myself and most of all the 18 people I am "guiding" and planning for I have already made them their 1st edition of a we are going disney world newsletter !! Can you tell i'm an overplanner? Thanks Again Im so excited

I understand the not feeling "normal" bit. I was diagnosed with RA, scoliosis and neurofibromatosis, type 1 when I was 12. I wasn't allowed to participate in PE and had to work in the library for that period during jr. high...talk about "out of the loop." After I had my second child, the doctors added lupus into the mix and several other conditions have developed since....Fun!....not!

You cannot be worrying about what others will think. They do not live in your body. They do not know what you are going through. The way I look at it is:
If someone judges me without knowing me, then their judgement is flawed and they are the one with the problem! Do what you need to do to make your life the best you can--after all, you will only live each day once--make it a great day!

 

[Haley Whippet]

Sorry you are feeling bad.. I am also a ECV user who was stubborn as a mule to admit I just couldn't walk the parks anymore.. Worried what people would think Etc..
But WOW, what a difference a ECV makes in enjoying WDW & not being miserable & in pain..
I wonder why I was so silly . Not one person treated me bad, said anything weird or looked at me differently. I actually found people to be very kind & also helpful. So no worries & enjoy a much happier, less painful trip.. Get a ECV!
Deb

 

[Mrsjvb]

thank you for your reply Figment,
but is it foolish of me to not want to use a wheelchair? I am just thinking of the looks I would get. I mean I look like a healthy young girl, would cast members or people just be thinking "here is another one" . Then I have a question could I rent one and then park it and get in line regularly with everyone else? Hopefully this would keep me from getting too tired.

in a word. YES


if it's a choice between a wc and not being able to walk at all, the wc wins every time. i was diagnosed at 5, was in a wc til i was 12 and now at 41..still recognize the need to do what is best for my everyday QoL.

 

[Haley Whippet]

Can I add a P.S. here..............
Does it really matter what a bunch of strangers think
when you will feel much better with a WC or ECV????????
And I bet the strangers are much too busy enjoying their vacations
to think about you (or me) on a ECV & why we are using it..

 

[Mrsjvb]

Haley that dog is adorable! I want one.. rescue?

butI agree with yorupost as well.

Tictac, last time we went about 3 years ago now( thank Goodness we will be back in September, I need the cruise and trip to the World to recover from the deployment).. I went to AK the first day. by noon, I was no longer walking the park..I was was limping from seat to seat. the spousal unit went on nearly all the rides alone because I couldn't even handle the lines that were on average less than 20 minutes long.

I was miserable not just from the pain but from missing out on so much, I had never been to AK before and I hated the fact that I couldn't even see it. DH was getting frustrated with not being able to do anything without leaving me and that it took me ten minutes to walk ten feet. so the next day he MADE me get a wheelchair..and the rest of the week I actually ENJOYED MYSELF. so much so that in September it's not even a will I or won't I, I am getting one.

as for the 'looks'.. one night we met a couple at the bar of the resort.He had just gotten back from Iraq and she was getting ready for open heart surgery. she was younger than me, had a better tan than me and looked healthier than most people in the room..and she was getting a chair for the parks. crossed paths a few times in the parks and she never got a second look. who cares what other people think? all that matters is that you enjoy yourself to the best of your ability.

 

[Haley Whippet]

Haley that dog is adorable! I want one.. rescue?

but I agree with your post as well.

Tictac, last time we went about 3 years ago now( thank Goodness we will be back in September, I need the cruise and trip to the World to recover from the deployment).. I went to AK the first day. by noon, I was no longer walking the park..I was was limping from seat to seat. the spousal unit went on nearly all the rides alone because I couldn't even handle the lines that were on average less than 20 minutes long.

I was miserable not just from the pain but from missing out on so much, I had never been to AK before and I hated the fact that I couldn't even see it. DH was getting frustrated with not being able to do anything without leaving me and that it took me ten minutes to walk ten feet. so the next day he MADE me get a wheelchair..and the rest of the week I actually ENJOYED MYSELF. so much so that in September it's not even a will I or won't I, I am getting one.

as for the 'looks'.. one night we met a couple at the bar of the resort.He had just gotten back from Iraq and she was getting ready for open heart surgery. she was younger than me, had a better tan than me and looked healthier than most people in the room..and she was getting a chair for the parks. crossed paths a few times in the parks and she never got a second look. who cares what other people think? all that matters is that you enjoy yourself to the best of your ability.

Yes, Haley is a rescue from Whippet Rescue. We adore her, She will be 10 in July..

Haley has learned to walk or trot along side me on my ECV, So there you have it, ECV's are pet friendly & very useful..
I have Fibromyalgia & CFS & almost constant pain.. But don't I look wonderful
I am Deb, Haley is my Whippet.. She is much cuter