Dealing with family members' attitudes

[Eeyore5]

I have very mild cerebral palsy, fibromyalgia, and a few other things that cause chronic pain. The CP is the one that impacts me the most when I overdo it. My brother growing up was always good at pushing me to do all that I can. This fall we are doing a big family trip to Disney. When I mentioned that I will need an ECV (as will mom) he and my sister-in-law were very negative about it. I explained the reasons and they seemed ok with it. But since then I have gotten lots of comments about losing weight and if i work harder at it I could walk longer. I couldn't have walked that much when I was 18, thin, and in the best shape of my life. I explained that I was in so much pain after walking 1/2 a day at Disney (October 2008) that I couldn't straighten my legs for 5 days. They accepted it at the time of the conversation but the comments keep coming. Any suggestions on how to handle their comments.

 

[bouncy54]

The next time they comment negatively to your use of a scooter, I would tell them what I tell my members of my own family who begin to whine about anything while on vacation. I tell them, "This is my vacation too and I'm not going to allow you ruin it for me, so bug off." (or words to that affect) I'm serious. I've found I've had to do that nearly every vacation for one reason or another. You have to be tough and think of yourself for a change. Not always an easy thing to do, but you have to do it.

I don't know if it's my advancing age, my health issues, or what, but I have become fiercely independent over the past couple of years. Don't think my poor husband or grown kids have yet come to terms with the changes in their Mom & Wife who used to live just for them. They've seen me hop in the car with 2 of my teen-aged grandchildren & drive 12 hours to attend a couple of concerts in Idaho... was gone for 4 days. A few months later I flew to Salt Lake City by myself for a couple more concerts. Had a blast.

I had the best time of my life at DL last summer because I rented a scooter and was able to take off on my own, which is exactly what I did a couple of times. I'd say, "see ya later" to my family and off I'd go.

Just remember that this vacation is your vacation too. Don't let anyone stop you from having the best time of your life... especially annoying, or rude, relatives! Spread those wings and fly! Let others wallow in their own shallow world if that's what floats their boat! You can choose to not allow their sourpuss comments to hurt you. Just let those hateful arrows fly right over your head.

You're going to way too busy making some magical memories to cherish the rest of your life!

 

[Piper]

A lot of times family members don't understand what you feel--how could they. This is especially true if you "push through" your pain and don't make a big deal over it.

I know it hurts your heart when they doubt you and your judgement (after all, they are the ones we need to understand and support us,) but stand firm and get your needs met.

Sometimes they use a weight gain as a reason for a disability--forgetting what we were like in "thin days!" Hang in there!

 

[KPeveler]

I had to deal with my family's issues when I first started using a wheelchair at disney - Once they realized how much easier it was and how much more I could do, they dealt with it quite well! Mostly it was that my family did not want to admit I was getting worse, and therefore had trouble accepting the outward sign of my illness.

Remember, you do what YOU need to so you can enjoy Disney. If you have an ECV, you are not asking them to push you anyway, so what does it matter to them?

Just tell them there is a difference between SURVIVING disney and ENJOYING disney, and you have every intention of enjoying it!

 

[peemagg]

I am dealing with the same thing with some of my family. I have one sister and her friend who anytime I use a cane or my scooter or say anything about my issues (even if they brought it up), they just roll their eyes and act like I am faking. That is their problem, not mine! I will use and do whatever is needed to be able to make life worth living for me. I am the one who has to deal with the pain and inconvience of my disability, not them.

In fact, I just told my sister yesterday that, "There is no cure for my disease and it is only going to get worse, so get over it". Not exactly what she wanted to hear, but it kind of shocked her into the reality that I live in daily.

Just do what you need to to have a good time and forget about what the others say. That is their problem not yours. If they are embarrassed or whatever their issue is, just tell them that they are welcome to go their own way if it bothers them so. Tell them you are not going to listen to their comments. They can keep their mouths shut in your presence. I bet they get the message real quick.

 

[MandyMaloo]

First off, I'm really sorry that you're dealing with this. It hurts to think that the people you love, respect, and support can't do the same for you, even when you need them there the most.

I've actually had it go both ways with my family. My step mother wanted me to rent an ECV last year on our trip to DL (this is when I was still mobile- I could walk, and it would be painful at night, but I could still do it) because she thought it would mean an automatic cut to the front of the line type service. She was essentially trying to push me because she wanted to take advantage of my disability. I was absolutely disgusted. It was so upsetting that she made absolutely no bones about the fact that I was essentially meant to be a pawn. Luckily, my dad stepped in.

I've also gotten some snide comments from my in-laws about needing to use some kind of supportive device (cane, braces or an EVC at Disney). Some think it's something they can joke about, but quite honestly, it's extremely hurtful to hear them mock my disability. I think it probably has more to do with a lack of education about what my disability actually entails than anything else. I think some of them don't know any other way to deal with it but to joke, maybe not even knowing how much it hurts me. Luckily though, my DH and my mother are very understanding, and have always stood beside me (metaphorically and physically) to help me do whatever it is I need to do to reduce the amount of pain I'm in.

You've gotten some fantastic advice in this thread. I'm so sorry that you've had issues with your family members being unsupportive, but remember, you're shelling out the same amount of money that everyone else is. How you choose to tour the happiest place on earth is your business and yours alone. You know your body better than anyone else, and you don't need to justify your choice to anyone else. Have a magical time, and be sure to let us know how it goes for you!!

 

[lovetoscrap]

Have you read the Spoon Theory? http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

This is such a great story to send to people or tell them and even for me to use when I think about my day. I find myself thinking in "spoons" to myself when I am planning out my day. Some people will never get it. But if you can illustrate it in any way you may have a chance to get at least a little understanding.

Do what you know is best for you and tell them to just get over it!

 

[Eeyore5]

Thanks for the advice. It was very helpful. I think it is hard for my brother to accept that I have limits since he was the one growing up always pushing me to fight my limits. For example, he taught me how to mow the lawn because someday I would have a house even though my parents were adamant that it wasn't safe with my balance. He taught me when they were at work. Now I hire someone since it is too hard for me pain wise, but at least I know how. When we were teens it helped him understand my disability when he volunteered at courage center with my ski team. Courage center is a place in MN that provides rehab and sports activities for people with disabilities. I was very active in the wheelchair sports program.

I think letting him know this is what I need to enjoy my vacation and be able to keep up will work. I will also let him know that if I am in too much pain to function well, I will be crabby and no one wants to see that.

 

[SueM in MN]

You got a lot of good advice on this thread and I hope it helps you to have a wonderful and comfortable trip.

The important thing to always remember is that you are the expert on you.
I don't know if you ever had a Gait Analysis in the past, but when my DD had one, we found out that it took her a tremendous amount more energy to walk a given distance than it would take someone who did not have CP.
She got to a point as she grew up where it didn't make sense for her to even try walking any more - her balance was so precarious and it took so much energy that it just was not worth it.
I also remember reading a study about the long term effects of mobility for people with cerebral palsy. Even though the study was about cerebral palsy, it has something to say for anyone with a chronic condition who is pushing themselves to the point of pushing too much.
At one point, there was a lot of emphasis on getting everyone with cerebral palsy to walk, even when that meant wearing braces that weighed more than the person, using arm canes and using so much energy to move that the person was drenched with sweat just moving a few feet.
And, self-propelling a manual wheelchair unless someone had no use of their hands at all.

Then, they started looking at those children with CP as they became adults. And, they found that along with their CP, many also had severe 'wear and tear' arthritis and were in constant pain from injuries and overuse.

So, the conclusion was that sometimes too much pushing is not just tiring, but actually damaging. It's good to stay as active as possible - we do encourage our DD to use her manual wheelchair and not always have someone push her. But, we keep in mind that too much may not only be tiring.

 

[Bete]

If everyone adjusts to your use of an ECV right off at the parks, then you will hopefully not have any problems about it.

If it becomes an issue, then I would go off on my own or with my loved ones that understand. With your mom using an ECV I don't know what the big deal is on one more person doing it. Maybe, if you use the resort bus transportaion system there could be some challenges getting both you and your mom on the same bus. Maybe, this is what is bugging your bro and SIL. You can only have two EVCs at a time on most of the buses there. If you go your separate way, you can always meet up for meals perhaps with everyone, but otherwise do your own thing.

I would go as far as stating ahead of time you don't need this kind of stress. I would explain their attitudes are affecting your feelings about the trip. None of us can stay young and many of us gain weight as we get older. If it's harder, now; it's harder. Just tell them you are doing your best and they should be satisfied. I couldn't tolerate comments about it. I think you really need to be sincere on how this is hurting your feelings. I would want this well understood before ever stepping into the park.

Do what you can to help and be well experienced using a scooter before you go. Practice with the free ones in the grocery stores and such. I would go as far as renting a scooter at the local zoo for a day; so, you can really get good at it. Also, learn what you need to do with one ahead of time like recharging the battery if you get an outside rental for a scooter and not a Disney scooter.

 

[Eeyore5]

I don't know if you ever had a Gait Analysis in the past, but when my DD had one, we found out that it took her a tremendous amount more energy to walk a given distance than it would take someone who did not have CP.
She got to a point as she grew up where it didn't make sense for her to even try walking any more - her balance was so precarious and it took so much energy that it just was not worth it.
I also remember reading a study about the long term effects of mobility for people with cerebral palsy. Even though the study was about cerebral palsy, it has something to say for anyone with a chronic condition who is pushing themselves to the point of pushing too much..

Gillette Children's adult clinic wanted me to do a gait analysis but I decided against it. The reason they gave was to study how I walk because they can't figure out why I walk as well as I do with the amount of increased tone and tightness I have. I don't want to be a guinea pig.

Have your read Gillette's article on when walking doesn't make sense? It is really good. As an Early Childhood Special Education Teacher I see the hard decision parents have to make about walking. When I first meet them, walking is always the goal. It is hard to help some parents understand that walking isn't always the best goal. I am a fan of getting kids appropriate assistive technology (wheelchair, power wheelchair, communication devices) as early as possible when we think it will be needed.

 

[mickey&minniealways]

I would probably start out reminding your DB that his body is not that of and 18 year old either. Nor should he expect it to be. So why does he expect yours to be. Even when people from the general population are in the best of shape Disney can be exhausting. You have made your decision and that is final. You want to enjoy your trip and feel strongley this is the way to do it. I would say that you know he thinks that he is helping but what he says actualy hurts and you know that it is not his intention. I would also remind him that this is the last time you want to speak about this. If he cannot keep his comments to himself then you feel that while on vaction you will need to go your own way but that this is not the way you prefer to do it. Don't forget to remind him that many disabilities become worse with stress, fatigue and dehidration and Disney is not the place to test tough it out.

Now I know that advise is all well and good, I also realize that though it is well meaning it is very often easier said then done. I speak from experience. I have 3 children of my own. Two of which have disbalities. My so called normal one is the one that give me headaches though. He went through an angry reblelous stage while in high school . Everyone had all kinds of advice and while I know they meant well many of it was not practical or realistic for us. Again easier said than done. So I have tried to chose my words wisely and carefully. So I will leave you with my prayers and good luck. Most of all though don't forget to have fun. Please, let us know how this works out and I hope that I may have helped in some small way.