Page 1 of 1 [ 6 posts ] 

liloleme
Veteran
Veteran

User avatar

Joined: 8 Jun 2008
Age: 52
Gender: Female
Posts: 1,762
Location: France

01 Aug 2011, 3:12 pm

Im posting this here because I wanted to talk about my daughters problems as well. We have a RX for her big stroller. She has weak leg muscles and its very common in Classic Autism. Some of the signs are getting tired easily, falling a lot and laying down to play....like reading books with their feet, ect. When my son and her are playing Wii he is standing up, usually right in front of the TV :lol: , and she is always laying on the floor. The only time she plays upright is when she does her dance game that we bought her to help with her coordination of her arms and legs. We also bought her a bike but she gets tired easily. The stroller will mainly be for shopping or long walks.
Anyway, Ive been struggling with an auto immune disease called Ankylosing spondylitis and they think I have other things wrong with me too that they have yet to diagnose. It had gotten increasingly more difficult for me to walk. My pain is very extreme to the point where I sleep very little and I am on opiates. I use a cane because I sort of waddle, they are trying to figure out what is wrong with my hips and I may need them replaced. My latest symptom is tipping over to the left which is odd as its my right leg that is weak.
I have to go and renew my visa and where we have to go is an hour there and an hour back. Sitting in the car is not too bad for me because I have my cushions and can recline the seat but I am still sore. So we drove all the way there to get my visa only to be told by a very nasty woman that we had to come in the morning even though it says on the web site that we can come in the afternoon. My husband explained that I have a chronic disease and am in severe pain and she said that there are people that come there at 5am and stay all day.....yeah thats great but are they sick and in pain??? Anyway, my doctor gave the wheel chair that is very nice and reclines so that I will not fall over in this horrible place that we will be spending all day in. There are only plastic chairs and cement floors. Standing, sitting and hobbling (walking) is difficult and very painful for me for long periods of time. I would have only been able to sit in those chairs for a few minutes at at time and my cushion would not have fit on them.
At first it was depressing to be given a wheel chair but now Im imagining the possibilities of having it. We could actually go places. I have missed so much, I cant go to the park with my kids, I missed fireworks (bastille day), and I would love to walk down (or ride in my case) the river. I will still have to get up and walk sometimes as I get too stiff if I sit to long or do anything for too long. Its like I spend all day (and night) changing positions and trying to stretch muscles to keep from freezing up which just causes more pain.
Im still remaining hopeful that the doctors will help me and I know that it may involve more surgery (had surgery on my lower back two years ago) and probably lots of physio therapy but I have to believe that Ill get better. Its kind of crazy to be nearly happy about a wheel chair but, I am! So I guess my son will be pushing my daughter around and my husband can push me....we can keep them busy :lol: ! At least we will be able to do more things now even though if it were up to my Aspie wed stay home all the time hes happy once we get out. I want to go see my kids ride their bikes so now I can do that without having to sit in the car and watch from a distance. I guess mobility is a good thing no matter what the mode is!



Annmaria
Veteran
Veteran

User avatar

Joined: 9 Dec 2010
Age: 49
Gender: Female
Posts: 555
Location: Ireland

01 Aug 2011, 3:38 pm

Hope you enjoy all the wonderful moments and trips with your family. :) Reading other peoples stories can make you stop and think about your own.


_________________
A mother/person looking for understanding!


BillyIdolFan217
Veteran
Veteran

User avatar

Joined: 8 Jul 2011
Age: 31
Gender: Female
Posts: 612
Location: NJ

01 Aug 2011, 5:47 pm

I am very sorry about your condition. But it`s so nice to see that u have a positive attitude!!


_________________
Stephanie Idol
Billy Idol fan 4 life!


Marcia
Veteran
Veteran

User avatar

Joined: 14 Apr 2008
Age: 52
Gender: Female
Posts: 2,148

01 Aug 2011, 7:04 pm

Boo! and double boo!! to the nasty lady. :evil:

Yay! and yay! again to the doctor for getting you the wheelchair! :D

Your post reminded me of when my son was little and he would ask about the wheelchair symbols which are used on signs for disabled facilities in public places. I told him that many people, probably most people, use some device or other to help them in their daily lives. It just so happens that the wheelchair has been chosen to symbolise disability. People use contact lenses and glasses to help them see; hearing aids to help them hear; wheelchairs to help them get about. It's just that the seeing and hearing devices are so much more common and smaller, that people don't think of them in the same way as they think about wheelchairs, but they all are used by people to give them better quality of life and enable them to live life as fully as possible.

Enjoy that wheelchair and the new freedom it gives! :D



Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 31
Gender: Female
Posts: 3,494

02 Aug 2011, 12:05 pm

From what I've read, most able-bodied people see wheelchairs as confining, and as a symbol of needing pity. As a result, most people with acquired physical disabilities resist getting a wheelchair.

However, to someone who uses a wheelchair, the wheelchair is not at all like what people think. Instead, it gives them freedom, because they don't have to deal with a constant struggle just to get around - or not get around at all. The wheelchair enables them to do many things that would otherwise be impossible.

It's a big adjustment, because a wheelchair is 'the symbol of disability' and marks to everyone that you are disabled. But if you look past society's attitudes, you'll see that it's really an instrument of freedom.



liloleme
Veteran
Veteran

User avatar

Joined: 8 Jun 2008
Age: 52
Gender: Female
Posts: 1,762
Location: France

05 Aug 2011, 6:19 pm

Thank you all for your support and thank you Ettina, thats just how I felt after I got it, then it dawned on me....Wow, I can do things.
We went camping for two nights. My husband, of course, did the work. We got a spot right next to the bathrooms and I did not take my wheel chair, just my cane. We were on a hill but my husband was very nice and helped me up and down. It was hard for me to get up off the airbed on the ground and I mainly just rolled out and pulled myself up with my cane. I could not go swimming as it was an above ground pool and the stairs were too scary, we didnt want to take a chance. My husband said the water was too cold anyway. I also did not get to go watch the kids ride the ponies but my husband brought them over to me so I could take some pictures :). Im glad we went, Im very sore and we are all tired but still glad. The stars were beautiful the first night...I sat in my chair that reclines so I could look up at them because craning my neck back isnt a good thing either as I now have new damage to the base of my neck. Damn this disease is fun....Kidding!
We are going to try and go stay in a hotel for a weekend before the kids go back to school....a bit more civilized and easier on us all but Im still glad we did the camping thing....the smores were awesome!