Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-04-2016, 02:48 PM #1
AliM AliM is offline
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Default Grandparenting with CRPS

Are there any grandparents on here with severe CRPS? I now have two of my kiddos married, and I can imagine that one of these days, one of them will announce they're expecting. Common next step, right?

But I am really struggling with the idea of grandparenting with my severe CPRS. It started 5 years ago in the ball of my left foot, and 2 years ago spread to the ball of my right foot. It makes walking all but impossible, since I'm constantly balancing on my heels to shuffle. In fact, I just got hand controls installed in my vehicles. (Which I LOVE, btw!)

The fact remains, CRPS has severely limited my ability to get around, plus my doc is pretty sure it has morphed into fibromyalgia since my entire body now hurts on a daily basis. My kids know to hug me gently since anything harder hurts. I can't be bumped or jostled without excruciating pain. I'm in a wheelchair for outings like the store or mall. CRPS Is a nasty bit of business, isn't it?

My college degree was in Early Childhood Education, and I ran a preschool in my home for years after that. But being around children now is like Kryptonite. You know how amazing they are--wanting to hug you, scramble onto your lap, thump on your arm or leg when they want your attention, and even knock into you when they're running about. Their enthusiasm for life is what drew me to getting a degree around them. But how on EARTH do I manage grandkids facing the severity of my pain?

I would love to hear from those of you who do it! I expressed my concern to a couple of friends before, and they just said things like, "Just tell them to be gentle."

HAH!!! What, are you KIDDING ME? That's like telling a dog not to eat the pork chop that just fell on the floor in front of them. I could use some REAL experiences from people who do this.

What have you managed to make work?
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Old 11-04-2016, 04:50 PM #2
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Originally Posted by AliM View Post
Are there any grandparents on here with severe CRPS? I now have two of my kiddos married, and I can imagine that one of these days, one of them will announce they're expecting. Common next step, right?

But I am really struggling with the idea of grandparenting with my severe CPRS. It started 5 years ago in the ball of my left foot, and 2 years ago spread to the ball of my right foot. It makes walking all but impossible, since I'm constantly balancing on my heels to shuffle. In fact, I just got hand controls installed in my vehicles. (Which I LOVE, btw!)

The fact remains, CRPS has severely limited my ability to get around, plus my doc is pretty sure it has morphed into fibromyalgia since my entire body now hurts on a daily basis. My kids know to hug me gently since anything harder hurts. I can't be bumped or jostled without excruciating pain. I'm in a wheelchair for outings like the store or mall. CRPS Is a nasty bit of business, isn't it?

My college degree was in Early Childhood Education, and I ran a preschool in my home for years after that. But being around children now is like Kryptonite. You know how amazing they are--wanting to hug you, scramble onto your lap, thump on your arm or leg when they want your attention, and even knock into you when they're running about. Their enthusiasm for life is what drew me to getting a degree around them. But how on EARTH do I manage grandkids facing the severity of my pain?

I would love to hear from those of you who do it! I expressed my concern to a couple of friends before, and they just said things like, "Just tell them to be gentle."

HAH!!! What, are you KIDDING ME? That's like telling a dog not to eat the pork chop that just fell on the floor in front of them. I could use some REAL experiences from people who do this.

What have you managed to make work?
I'm not a grandparent. It might come soon, or it might not. You just never know. Are you sure they all want children? I bet, or you'd not be as worried! LOL

Yeah, you can't stop kids when they are less than 3 years old. Just be careful when handling them. And they'll learn soon enough if people keep repeating to be careful around you. Not every child is an unguided missile.

Anyway, good luck!
Hope someone comes along here with some better advice.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-05-2016, 01:06 PM #3
Shay08 Shay08 is offline
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Originally Posted by AliM View Post
Are there any grandparents on here with severe CRPS? I now have two of my kiddos married, and I can imagine that one of these days, one of them will announce they're expecting. Common next step, right?

But I am really struggling with the idea of grandparenting with my severe CPRS. It started 5 years ago in the ball of my left foot, and 2 years ago spread to the ball of my right foot. It makes walking all but impossible, since I'm constantly balancing on my heels to shuffle. In fact, I just got hand controls installed in my vehicles. (Which I LOVE, btw!)

The fact remains, CRPS has severely limited my ability to get around, plus my doc is pretty sure it has morphed into fibromyalgia since my entire body now hurts on a daily basis. My kids know to hug me gently since anything harder hurts. I can't be bumped or jostled without excruciating pain. I'm in a wheelchair for outings like the store or mall. CRPS Is a nasty bit of business, isn't it?

My college degree was in Early Childhood Education, and I ran a preschool in my home for years after that. But being around children now is like Kryptonite. You know how amazing they are--wanting to hug you, scramble onto your lap, thump on your arm or leg when they want your attention, and even knock into you when they're running about. Their enthusiasm for life is what drew me to getting a degree around them. But how on EARTH do I manage grandkids facing the severity of my pain?

I would love to hear from those of you who do it! I expressed my concern to a couple of friends before, and they just said things like, "Just tell them to be gentle."

HAH!!! What, are you KIDDING ME? That's like telling a dog not to eat the pork chop that just fell on the floor in front of them. I could use some REAL experiences from people who do this.

What have you managed to make work?
I hope that you get some good suggestions from grandparents and parents with CRPS. I know I sometimes wonder how parents with CRPS manage. I do know that many have a lot of help from their parents.

It would really be the responsibility of your children to make sure that they constantly run interference for you at least during those difficult years when children just don't understand the difference between gentle and "overly enthusiastic." Another suggestion would be to sit behind a table or desk to at least protect your lower body from any bumps, thumps, or hard squeezes.

At the same time try to remember that there will be only a short time period when the child/children will be at a tough stage. You should be able to enjoy the early infancy stage and hopefully your family will understand how important it is to protect you until the little ones can understand how they must treat you.

I hope that you and your family can come to an understanding about your needs so that you can enjoy being a grandparent.

Gentle hugs,
Shay
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Old 11-05-2016, 01:54 PM #4
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I hope that you get some good suggestions from grandparents and parents with CRPS. I know I sometimes wonder how parents with CRPS manage. I do know that many have a lot of help from their parents.

It would really be the responsibility of your children to make sure that they constantly run interference for you at least during those difficult years when children just don't understand the difference between gentle and "overly enthusiastic." Another suggestion would be to sit behind a table or desk to at least protect your lower body from any bumps, thumps, or hard squeezes.

At the same time try to remember that there will be only a short time period when the child/children will be at a tough stage. You should be able to enjoy the early infancy stage and hopefully your family will understand how important it is to protect you until the little ones can understand how they must treat you.

I hope that you and your family can come to an understanding about your needs so that you can enjoy being a grandparent.

Gentle hugs,
Shay
I'm one who gets a lot of help from her parents. My parents take care of me, if and when I need it (on demand). I love that. I live in a studio-apt. beneath them, and so during the day the doors are open and I just have to call out for some help. It's amazing.

They are in their 70s though, so... at some point I'm going to need a different solution.

Yes, I agree so much with what Shay says. They only stay little for so long, and a 3 year old can understand "easy" and "don't hurt" and "be careful around grandpa or grandma". So...
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 11-06-2016, 06:43 AM #5
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Not a grandparent...but I have a soon to be 2 year old daughter. I can tell you...it's TOUGH. Everything you said is pretty much correct...I get bumped all the time, stepped on, trip over toys, sometimes when she sits in my lap for reading time she will kick her feet and send me into a flare up, etc. It's easy for other people to say things like, "Be careful" or "Tell them to be gentle"...but kids are kids...they don't understand...and most of the time she hurts me by doing things that are meant to show me love. And that just is what it is. I'm not willing to give up any of those moments with her...so I'm almost always dealing with increased pain because of one thing or another. It's been even harder since I fell off a ladder at work a year ago because now my shoulder/arm are a mess as well.

BUT...if I wasn't her mom...there are definitely things I could do to spend time with her that would not be as likely to cause flare ups. As it is...there are definitely activities that are mommy activities because they are easier on me. One is feedings...when she's in the high chair I feed her all her meals at home. That's actually gotten harder since I hurt my shoulder...but as long as she's on my right side and I can use mostly that arm to feed her...she doesn't hurt me doing that. In the high chair we can also do things like color together. I read her books while she eats her meals...that is always fun.

When she was really little...we had a play yard fence that we kept up all the time so that I didn't have to worry about chasing after her because that wasn't going to happen. At my MIL's house...we sometimes put the baby fence around me to protect me from wild and crazy kids...prevent the bumping and such while still letting me be around everyone.

Those are just a few things that we do. When that day comes...you can definitely find some ways to handle those first few years while minimizing the issues like bumping and flare ups. It won't be what you would have envisioned pre-CRPS...but it will still be time spent with loved ones. The hardest part actually won't be the kids...it will be talking with your OWN kids...their parents...about what you NEED from them to make these visits as easy as possible for you. That's always the hardest for me anyway...because I am not good at asking for help...but you've got to do it if you want to be able to spend time with littles but have the issues that we have. Let me know if you have any other questions about anything I did with my daughter to make life a little easier. As the years go by I am sure I will be adding to that list.
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