It was hard raising my son after I developed CRPS and he was 9. I can't imagine how you've managed.

My son was very active in sports and activities, but he also played intensely and quietly by himself indoors from the time he was a toddler, so I know I had it easy. There were periods I was working 60 hours a week or worked and went to school, but I had family help as well as school and daycare and I was healthy.

Maybe the day you need some help, she could start an activity like tumbling or dance? Then have a young babysitter in to play? Or you could drop her to her activity and a relative could pick her up and keep her for a few hours or even overnight?

Sit down and write out what tasks are the most difficult for you to do. Then you can figure out if they can be done a different way or if someone can do them. You have to reserve time for her when you're at your best and rest when she's gone.

One last thing, I can't stress enough how important a balanced diet can make with some kids. I figured out that when my son ate poorly he would get hyper and irritable. If his sleep schedule was not maintained, that would exacerbate the problem. --When my brother first started babysitting him he'd call complaining and it was always because of those issues.

You could have a conversation with your mom and see if she wants to be part of the rotation of help and set up a schedule. Even if it's a few hours every other week or once a month. And if she doesn't, that's her choice, you'll find help elsewhere.

i agree with you i had this monster for 37 years and still have a hard time asking for help the other day i seen a new shoulder Doctor they work on the vikings and he could not believe that i was still here and i ask him what do you mean he said that they lose a 3-4 RSD patients a year to this monster so what i ever need he said just ask i said i was having trouble with WC and we will take care of it and gave me crap and said you need to sak for help and let people help you . but it is hard i told him i dont want to give up. sorry about this i didn't want to rant having bad day and i know how this is. it a sor spot in my life too.

No worries...this is a safe venting area because I totally get it. It's hard to ask for help when this is your every day. I have an easier time asking for help the weeks I'll be recovery from the DRG implant because that's a short term where i have xyz restrictions...but when you need help every day it's hard to keep asking for help.

Those are some good ideas...thank you. I actually think I have it pretty easy with my daughter compared to some of the stories I hear...but even the easy things are hard for me...lol. she has slept through the night every night 10-12 hours since she was a month and a half old. She doesn't nap and hasn't at all since 2...and that's been hard especially because she gets irritable during That time when she should probably nap...but I seriously know I am lucky she sleeps well at night. I am terrified of potty training because I feel like it will mean trips upstairs at night and we have never had to do that. But maybe not...we'll see on that...because of the other hand bot lifting her up to the changing table will be awesome. Anyway...I digress. Thanks for the tips and I will look into those things for sure.

Doesn't daycare require she nap?

They took her out of the nap room because she just sat in there talking (quietly) to herself and her animals for 3 hours and she did that for about 6 months before they gave up. She wasn't disruptive...they would actually hear her telling the other kids to be quiet if they started making noise...lol...but she just wasn't napping. She's out with the older kids now and usually just watches a movie.

When my younger son gave up naps at 2 I was so distressed! I needed nap time even if he didn't. I instituted "movie nap" and we put on a dvd (curious george type stuff) on after lunch and he lay on a blanket and rested for the length of the dvd. At least then his body got some rest. Because even if they don't sleep, children need that rest time.

I can't imagine keeping up with a 3 year old with CRPS. I know that I would look at ways to keep her confined to manageable spaces at home with many of her fave activities in that area. Also work on teaching her about how mommy hurts (you probably already have) so she can learn to be careful of your body. 3 year olds can begin to learn some empathy, and to be helpful. She will be proud if she can be your helper and bring you something (i.e. get mommy her keys off the floor).
I certainly hate asking for help, and don't get enough help from family either.

I think we have all been there a time or two unfortunately. I still don't get the help I need a lot. Funnily enough more family members and friends have not only offered help, but actually followed through with it now that I have my back issues. I guess it's more understandable or relatable or something. My mother is on the other side of the state but was supposed to come help me take care of my house and kid after my lidocaine treatment for a few weeks but backed out 2 days before my procedure, get this, because if she did she couldn't afford cigarettes for the rest of the month lol.
One thing I have learned is that if someone comes to help, it's because they can or want to. Don't beat yourself up when they have offered. I'm willing to bet that if the situation was reversed that you would be more than happy to help a friend or family member in need! You can only do the best you can within your own limits. It is also okay to NOT be okay sometimes. With CRPS or any other debilitating condition, we will have our down days. Just remember to love yourself and try to focus on the things you CAN do. I hope you find some relief soon hun!!!

I'm not sure if there is a way to avoid it, but I do think my disability and requiring my son to be mindful of my hypersensitivity effected him. Maybe in both positive and negative ways, but if it's possible to shield our children it's may e better? The best I could do was work towards my highest level of function and save time for him when I was feeling my best.

I think that we can't shield our children. We can be reasonable in our expectations, and we certainly don't want to overwhelm them. But hiding things from them... they know. When things were getting bad with my husband, I was worried about the kids, and I bought a few books about what to do when a parent is chronically ill. One thing that came up over and over was that the kids always knew something was up, and not knowing WHAT that thing was, was worse than getting an age appropriate explanation.
Of course our children do need our time and attention, and it is important for each of us to find our own ways to do that w/in our own pain and physical limitations. But if you brainstorm and think of things you CAN do instead of focusing on the can't, you will find that there are always options (lessons from my functional restoration program!)
With their dad being now completely a quad and me being somewhat disabled too, my kids have to adapt. But living this way makes them more aware of disability and therefor far less likely to treat people with disabilities as people who are "less than" or looking through them, etc. They have more compassion and sensitivity than other kids their age. While they are pain in the butt kids, when I need help, or their dad needs help, they are always willing to do what is needed without complaining.
And yes, they have chores, partially because I can't do those things. But honestly they would have had those chores anyway at some point, because that is what I believe in.