And yes Kelly we deal with it on a daily bases.People have no idea what we deal with unless they have been there.
Thanks turtle that is sad about your friend that is a nurse
Nancy yes it is important to have someone to talk to.My oldest daughter has been there when no one else has.
Rose that is true.But when they ask questions but don’t get the answer they want its hard
most people haven't a clue what ataxia is. i would get a t-shirt on the subject of ataxia.
Lorraine that is true.My daughter knows more from research with helping me than a lot of des.
I was trying to say Doctors Lorraine
The following people don't accept my ataxia: husband, father,age 93, 4 children.
The following see something is wrong but say nothing: mother, age 91
The following see something is wrong but warned me "not to keep this up": mother in law
No one seems to know what ataxia is let alone have it.
The only vaguely supportive family member is my eldest daughter who has a disabled child. (Nothing to do w me.)
Neta seems like you understand more than most people.my younger daughter has the starting of same eye problems I have.So she doesn’t accept it because she thinks if she doesn’t it will go away.My son acts like he accepted it but actions speak different.A lot of friends just avoid or make comments.My sister and brother just say to me just keep trying it will go away.So I thoroughly understand.My mom won’t talk about it.She told me that she can’t accept this.So therefore she won’t talk about it.Earlene
Sometimes I think they think I'm faking it. They think I'm using this to not work. I dont put my feet up because I'm lazy - they hurt so bad I cant do anything else. They bitch about "having to go to work." Gosh I'd work 100 hrs/week shoveling cow shit in the rain for 10c/hr if I could have my arms and legs back. Guess that's the "bargaining" stage of grief. Even when I fall they think I'm doing it purposely. ABs dont get it. They dont or want to understand and thats just the way it is. We're on our own, most of the time.
True TDG..Emotional pain hurts too.
If someone wants to know I explain what it is and what it affects for me and that it is a rare disease. I think saying that it is rare let's people know they probably haven't heard of it without saying it.
Hello there Earlene
NO..I don't have problems about others not accepting my ataxia..not anymore that is. Main thing is that YOU accept it yourself. But look who's talking..I am a 'long term' ataxian (1st symptoms 2002, diagnozed in 2004). And your's is still short. It takes quite some time to go through ALL the stages: disbelief, anger, sadness and then finally the gift of acceptance.
I also read the piece you wrote in January last, about the husband thing. Well, it's hard for them too, they see you change..getting more immobilized bit by bit.So they are shadow diagnozed as well, having a complete other life then they had before..being a caretaker. My husband is now the cook, waiter, washing lady, cleaning lady ALL at the same time. We also probably spoilt them a bit in the past I think, when most household chores were no way near them, huh. My husband has gotten grumpier over the years and then I just say something like: well I've been washing the clothes, doing the groceries, cooking most of the time, keeping house for some 25 years next to my job..now it's your turn. Such a remark doesn't make him any happier though, but it's the TRUTH, gives him something to think about. I tell him that I would love to still work the garden etcetera and that he should be happy that I don't get bored with this sitting down life. Then I would be the GRUMPY one, which would be pretty bad to handle for the both of us. You think I like it to ask for things ALL the time: a glass of water, a cup of tea, having visitors and not being able to do a thing etcetera. But all that doesn't bother me anymore. I focus on the CAN DO's. It is what it is. And if crying a bucket full would be the cure, would be of any help, I'd gladly ask for a bucket more. Only thing to survive this ride, is by staying positive. And negative energy is the last thing we can use around us, right. So hold your head up high, stay strong. Your mind, the person you are, hasn't given up on YOU. It's only the house you live in, your body, which has let you down. Find things you like to do. I love to read, knit my own designs, do the crypto puzzles and play bridge on line (the bbo site) a lot. This comment is turning out to be a book, so I'll stop right now. Hugs from Holland, Elle.
Maybe we should just tell anyone that we could tell them but then we would have to kill them.
I was at Wal-Mart this morning and when I went to pay the girl asked if I was OK and I told her I just had too many martinis then she told me I hope your not driving . Like I have a chauffer.
Thanks Ellie some good advice
My problem with telling someone that is they would probably call the police.Thinking I was trying to drive and I don’t walk that good.Most of time in a power chair thanks gelu65
Some people just dont understand.
Everyone has had something in life that they can not control. We have the burden of something inside us taking over. When people ask me what is wrong with me, I reply, "What is wrong with you"?
Dear Earlene, it's hard to explain ataxia to someone that's never had it. I was diagnosed eleven years ago, although I had very minor symptoms starting about eight years before diagnosis. Actually, I find people in general to be very kind. I don't talk too much about it to my family and friends, as I think they don't want to see me having to deal with this, because they love and care about me! I just do the best I can with hopes that others are understanding and supportive! My best to you...,;o)