[Cake]

I'm sure I'm not the only one who has been told that there is a really easy fix to our RSD that we should have thought of already. For me, these range from drinking lots of orange juice to taking a magic vitamin pill.

But my 3.5 year old daughter got to the end of her tether with me recently. I've been in a lot of pain (see my other post if you want the details)
and she asked me to get her a drink. I was sitting on the lounge, at the other end of the house to the kitchen, and said I was too sore to walk there right now but Daddy will get her one in a minute.

She sighed, rolled her eyes and said "Mummy, it's not THAT hard! You just do this!" Then she turned her back to me and showed me what to do
"You do one foot" she said, as she stamped her left foot down "then you do the other foot" she then stamped her right foot down "then do the other foot again then go all the way to the kitchen! It's not hard, you know"

She did the movements very slowly, as if she was teaching the stupidest person in the world how to walk! So I humoured her and said "Ohhhhhh I didn't know that! THANK YOU for teaching me!"

But I shouldn't have said that, as she then made me get up and try to do it myself. I tried, but I struggled as I really couldn't put my right foot on the floor, so before I knew it, she grabbed my right ankle and slammed it down on the floor! "Like THAT Mum!" OMG I nearly died! It's VERY hard to hold your reaction in when you're in front of your kids and you feel pain like that!

But of course she meant well, so I smiled (through gritted teeth) and thanked her for showing me how to walk. I would love it if it was as easy as she thinks, but unfortunately it's not!

Does anyone else have any funny stories about their kids' responses to their RSD? Or any comments you've had from people about how to be cured?

x Kate

[CRPSbe]

Kate,

I know she's only 3, but I'd try to explain it to her in a way she can understand, that mommy has a booboo that won't just vanish, one that has come to live with mommy for longer and that some booboos can't be kissed away, unfortunately AND that that's why you have to be careful around people with an injury or around people in a wheelchair! That's always a valuable lesson!

You know, just so she won't try to "help" you again... or anyone else for that matter. Slamming your foot down or more help like that is not something you want on a regular basis and she has shown and proven to you that she needs and deserves some kind of explanation. She clearly wants to help you and wants you to get better NOW. She just doesn't get it and that might become a problem. Right now she's powerless to help mommy, her help is all in vain, and she might not know how to deal with that at all without some kind of explanation. Talk to her!

[AintSoBad]

Originally Posted by Cake

I'm sure I'm not the only one who has been told that there is a really easy fix to our RSD that we should have thought of already. For me, these range from drinking lots of orange juice to taking a magic vitamin pill.

But my 3.5 year old daughter got to the end of her tether with me recently. I've been in a lot of pain (see my other post if you want the details)
and she asked me to get her a drink. I was sitting on the lounge, at the other end of the house to the kitchen, and said I was too sore to walk there right now but Daddy will get her one in a minute.

She sighed, rolled her eyes and said "Mummy, it's not THAT hard! You just do this!" Then she turned her back to me and showed me what to do
"You do one foot" she said, as she stamped her left foot down "then you do the other foot" she then stamped her right foot down "then do the other foot again then go all the way to the kitchen! It's not hard, you know"

She did the movements very slowly, as if she was teaching the stupidest person in the world how to walk! So I humoured her and said "Ohhhhhh I didn't know that! THANK YOU for teaching me!"

But I shouldn't have said that, as she then made me get up and try to do it myself. I tried, but I struggled as I really couldn't put my right foot on the floor, so before I knew it, she grabbed my right ankle and slammed it down on the floor! "Like THAT Mum!" OMG I nearly died! It's VERY hard to hold your reaction in when you're in front of your kids and you feel pain like that!

But of course she meant well, so I smiled (through gritted teeth) and thanked her for showing me how to walk. I would love it if it was as easy as she thinks, but unfortunately it's not!

Does anyone else have any funny stories about their kids' responses to their RSD? Or any comments you've had from people about how to be cured?

x Kate

Kate,
are you wheelchair bound? If so, I didn't realize, I'm sorry....

But, you asked for a story with children, I've got lots!
I have two children, my son is 5 years older than my daughter. Perfect. (I thought). (29/24, now).
Wife #1, left when I got the RSD dx, and was put on methadone. She didn't want to be married to no drug addict!
(Yet, she went out and dated, so many druggies in the 'hood, and it ALL got back to me. I feel so sorry for those folks, who need to feed their weak ego's).
Anyway, I was left to raise my two little darlings. I put them both through private school, and that demanded that I participate in "activities", school bus rides to here and yonder.. It was great being Mr. Mom...

But, of the best, was "one particular school lunch". My first, I was called in to be a "helper"... no problem!
My little daughter, was great at waking up, and bringing me a cup of tea. (that way, I'd drive them to school, rather than they wait on the bus). OK, we're set.
I go to the school office, (people I know fairly well) and discover that the person I'm supposed to be "helping" is not coming in.
WHAT? (slightly screamed).
OK, I'm a master plumber, and have installed several commercial kitchens, but they all have their idiosyncrasies. I had to learn this one, fast! I must've had the secretary on the phone a dozen times, and it got to the point, that we were laughing.
Hot Dogs for lunch.

Besides this being a 34〫almost freezing rain and windy day, I had to carry so many of those Bread delivery trays, through the rain, to the kitchen, in the basement. 500' say? Ok. got them in.
Then, four of those GIANT, I'm guessing 25 gallon pots on the commercial gas stove, and boil the water.
The dogs are frozen, I throw them "gently" into the warming water.
Then, I need to find all the condiments! AGH!
I call the secretary, and say, "SEND MY KIDS" I need help!
They were stoked. My son is near ready to graduate, say 7th grade, my daughter, 5 years behind..so, 2nd grade. like that.

I (we) got doggies boilin' rolls being Opened, we gotta "roll the dogs", and wrap them. then, make sure the condiments are ready, for each room. (OH, Yea, we got special orders too).
Then, the beverages!!!!! Yikes!
Milk, Lowfat, Skim. OJ, grape, banana, and whatever kind of juice they might think of....
So, the "carriers", hahaha! I got even here.....
When they came in, (we had lists for each room, how many this and that), I said wake up guys! and gals, who did better of course... Count out your beverages, there's the refrigerator! (Son and Daughter helped). because we had to do an inventory!
Then come to me for the Hdogs! (son and daughter, indispensable now)!

This was getting fun, although I HURT like well, you know..... WHERE CAN I LAY DOWN?

I and my two children, fed the Entire School that damp, cold, windy, nasty day!

The entire school, let out 15 minute Late, that day!
I think they got less homework too!
Everyone talked to me @ the P/T meeting.
And, I'm so happy of it too!
As are my children. Every student and teacher in the school, gave them a pat on the back, and they not only got to
help serve and make lunch, but, got out of class for the afternoon!!

OMLord,
I had nightmares, of "Ghostbusters", remember where the Green Ghost, busts out of the hot dog cart, munching on
so many hot dogs? Yea, I still get that nightmare!

The Only point being, other than the extreme fun, and wonderful memory that "we" made that day, and all the
talk afterwards..... Is this...

Your Children are so prized.
What a wonderful way to make memories, and I wouldn't consider any others to be more special!

We've got to make that "Extra Leap" for our children.!
We don't want to raise them, with moaning and groaning.

Kate, I'm proud of you!

And, I could go on and on.
But, my children, (who by the way, don't speak to me now), are and always will be, my pride and joy!

Oh, I'm a grandfather now, too!
(Nobody told me, I found it on the internet)....

Gotta love those kids!

Be Blessed ya'll!

Pete
asb

[msdrea83]

LOL omg subby! I can so picture her doing that! I'm sorry she slammed ur foot! I can only imagine, but good job in holding it in and forcing a smile vs yelling at her. lol i know if my sister ever tried to move my arm or hand when i hurt bad i'd sock her good lol. One time my cousin justin punched me in the arm like saying hey... he forgot about my arm being hurt, this is like a year after being dx, and i started crying... ya he turned around and i kicked him between the legs. I was like ya know u semi know how i feel! needless to say, he never touched my arm again lol

[finz]

I'm thinking of the Winter Warlock song from "Santa Claus is coming to town".....


Put one foot in front of the other (da dum da na)

and soon you'll be walkin' cross the floor-r-r

[Cake]

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!

[bassman]

Kate that is a very cute story. My daughter, now 24 and married, was only 1-1/2 when I got hit with RSD. So, daddy has been hurt her entire life.

It's incredible how perceptive and caring a young child can be. They can learn a lot more than many people give them credit for. Be sure all of your children get a good understanding of how mommy is hurting and what is ok and not ok.

If you have good days (I had some long stretches where I felt half-way decent) make sure you take advantage of them and really do something fun and memorable with your kids. My daughter and I have some great memories of times together.

Take care!

Mike

[kathy d]

Hi Kate,
Just a quick thought I just had when you were talking about your long house and the kids taking your crutches...you should buy another pair of crutches and leave one set at each end of the house. I had a small apt when this mess started 5 years ago and left one crutch at the entrance to my bedroom and one at the entrance to the kitchen and wheelchaired in between. It worked for me and I thought it might work for you. You are my hero with four children AND RSD. Gosh, you deserve a medal or something. Keep up your GREAT WORK!!!
God Bless,
kathy d

[Cake]

That's a good idea, Kathy. I should also keep a 3rd pair in the car, as there's nothing worse than going somewhere only to find you've left your crutches at home

Oh, and I thought I'd add that you guys might like to check out a piece my eldest daughter wrote for a writing competition, about me being her hero. (I'm very flattered she thinks that, but personally I reckon my husband is the hero in our family, as he's given up his career, his dreams and ambitions to look after me and the kids full time).

Her piece of writing is on my blog (the link is in my signature below). Once you're on my blog, click on the "CRPS/RSD Info" link above the title picture and scroll down to the bottom of the page. Bailey's got a very mature view on my RSD and she makes me so proud, I only hope she keeps thinking this way as she gets older, and my other three kids also do the same.