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Old 10-23-2009, 02:09 AM
Cake Cake is offline
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Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
Cake Cake is offline
Member
 
Join Date: Sep 2006
Location: Australia
Posts: 148
15 yr Member
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Thanks for the replies, guys

I'm not in a wheelchair, but some days it's really hard to walk and if I leave my crutches at the wrong end of the house (we have a really long stretched out house) then I often find myself sitting down until I'm able to get up and get them. Oh, and sometimes I finally get them, only to find the kids have been playing on them and lowered them to knee-height!

Hannah's mostly doing really well with it. All four of my kids have had to learn a bit more about it over time, as my RSD started when my first child was 2 years old, and I've had three more since then. I tell them little bits at a time, that they can understand, and slowly build on it over time. If they ask me a question I always answer it the best I can, making sure I still keep it positive. The older ones know I'm not getting better even though I take medications everyday, but they also know that if I didn't take those medications, I'd be a lot worse.

Plus they see me working my ding off every day doing physio and other exercises (mainly using Wii Fit and Wii Active and making my own programs using my resistance band, my small dumbells and the balance board) so they know I'm doing everything I can to fight this and they're always saying they're proud of me, which is never a bad thing!

All four kids (now aged 3, 7, 9 and 11) know which is my bad leg/foot and bad arm/hand and have adjusted to me being like this as it's the only way they've ever known me. If they do accidently knock me on my bad side, they're SO apologetic and often get upset for me, so I try and put on a brave face and let them know I'll be ok, as I don't want them to feel too scared to be near me, or to feel guilty that they've hurt me.

There's a delicate balance between making sure they know to be careful with my right side, and having them so worried they'll hurt me that they don't come near me, but mostly it's all ok and they're such caring, sweet kids that if I get hurt when they give me a big hug on the wrong side, that's a pain I'm happy to take.

On the opposite of what Hannah did that day with showing me how to walk, one day, when she was only just two, she came with me to a doctors appointment. When I sat down in the waiting room, she went over to the kids corner, picked up one of the small plastic kids chairs and dragged it over to where I was sitting, put it in front of me and said it was "for your sore weg" Even at that age, she was caring for me and understood that when I sit down, I have to have some kind of foot rest.

She's my sweetie and brings me so much joy and laughter!
__________________
RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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"Thanks for this!" says:
ali12 (10-23-2009), SandyRI (10-25-2009)