Asking for help
 

Venting a little...

So...I have to say...the hardest thing about having CRPS and a disability for me is asking for help. I really struggle with this because while my husband's family have been VERY supportive and helpful...bending over backwards to help me out even though it's a big inconvenience (and they never say that it is...I just know it is because they have jobs and families of their own to care for), MY family has not been very helpful. They SAY the right things but when it comes down to actually helping they just don't or make it sound like it's such a chore (when in reality my mom doesn't work, lives on her own, and is supposedly living near me instead of with my job specifically so she CAN help me).

I hate feeling helpless. I hate asking for help. I hate being made to feel like a burden (because i already feel that way and don't need other people adding to that fire). I hate that my family disappoints me time and time again with their lack of understanding or caring. I have reached a point where I would rather put myself through horrifying amounts of pain trying to care for my daughter than ask people to help who clearly do not want to based on their actions (not their words). I already live with a baseline of 8/10 pain...ANY activity puts me at a 9 and 10 is never far away.

I'm just so...tired...

For a variety of reasons I have found it's sometimes much easier to simply pay for help. It's amazing how much can get accomplished in an hour or two, with paid help. You can also hire a young babysitter to come over and play for an hour with your daughter a few hours a week, when you need a break.

I also find the more I adapt my environment so that I can manage better, the more functional I am. Buying a couple of trash cans that have hands free sensors has really helped.

Thanks. I feel the same way...it's why for the last 2 years my daughter has continued to go to daycare 40 hours a week even though I've been home. I just can't take care of her 24/7 on my own. But that still leaves one day a week at least where I need someone to help all day with her when my husband isn't home. Hopefully the days of needing this level of help are numbered...but if not I think I will look into paying someone to come and help that other one day a week. I have found that it's usually easiest for me to take my daughter somewhere that she can run around and play for several hours. Going out is tough...but once there if I can sit and rest for several hours while she plays that can be easier on me than just staying home. When my husband and I went out with her last week to a furniture store...my daughter spent an hour (no joke...one full hour) playing with the recliner that also goes up to help you get out easier. I almost said let's just buy that chair so she can play with it at home for hours at a time...lol...oh I am so desperate. But I am finding small things I can do with her to make it easier. Not easier than someone just helping...because that's really the only "easy" option...but slightly less painful at any rate.

We have adapted a lot to make things easier for me...that's one thing we've been good at. But there's no way to adapt a 3 year old...lol...and it's caring for her that is the hardest thing on me. I think back to when things were REALLY bad 6-7 years ago...and it was a cake walk compared to now mostly because I didn't have anyone else to care for besides myself. I could just sit and rest when I needed to...but with a little one you just can't. She needs more water, some milk, a snack, a meal, doesn't like the meal, wants another snack, wants to watch a movie, then another one, then there's the constant play with me play with me play with me, and the diaper changes...ugh. I love her so much...she is what keeps me going...but when you can't use your arms and it hurts to walk and be touched...it's just...so...hard.

And I know it's hard for everyone. You all get it...just feeling especially emotional right now after being made to feel...I don't know...like I'm lazy or something because I ask for help when asking for help is literally the hardest thing for me because Id rather suffer than ask for help...but have just reached that point where that's not a smart option because all it will take is one bump, one fall, etc and I could be out of commission and what happens if I am alone with my daughter when that happens? And it's happened...I've laid on the floor for 3+ hours crying and unable to move while my daughter sat on me, touched me, cried at me, etc and no one was there to help me...and that was so scary for me because what if she'd done something dangerous, or got hurt, or something else horrible. Scares me just thinking about it...so that's why I ask for help and why I will continue to ask for help...just maybe now from difference sources since I can't count on my mom and I really can't take the additional stress that her "help" is causing me lately.

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.