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.

Know the feeling well
 

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.

So...my daughter just turned 3 and she definitely understands the concepts of mommy hurts and mommy needs to rest and I feel like she does really good with this but she's also just 3 and is easily frustrated when she wants something from me I can't do. Shes really into playing with "guys" now (Mickey figures, Lego guys, etc) and I can't always hold them or can't hold in both hands or can't move my arm much to play with them. Most of the time she's ok when I say I can't do it but sometimes she tries to force the guys in my hands or cries when I say I can't and says. "But I just want to play with you!" That's so hard...she really is sweet and that breaks my heart. She rebounds fast...because she's 3 and doesn't hold a grudge...lol...but it still makes me sad. Also hard is that if she does bump me or hurt me...she says sorry and hugs me. I don't want her to feel bad for just being a kid, you know? Usually she did nothing wrong...just normal kid stuff...so I hate that she feels bad about it. She really is a sweet heart and things are gradually getting easier as she gets older. She can do little things for me, like bring me stuff or put stuff in the garbage, etc, and is getting better at independent play. But play time is the least of the issues. Necessary things like lifting her out of bed, changing her diaper, getting her dressed, cooking her food, etc...those are the things that take a daily toll on me more than anything.

I so understand how you feel Catra. I feel that way too sometimes. I just keep reminding my family and friends how much pain I am in and that I'm doing the best I can. That's all we can do is our best. I know it hurts when they still just don't "get it". Nothing about having rsd is fair. When I am feeling low about having rsd and how I am treated I go in my room and just keep to myself and watch some shows that make me laugh. And I try to remind myself that whatever I am able to do is good enough. And then I vent to my family here at NT to help me get through the pain I am feeling. I Hope you know that you are not alone and that you are very much appreciated for all you do to help others here at NT. And I hope you have a better day today. Do something special just for yourself today. You most definitely deserve it. Hugs and Prayers.

I'm so sorry ... I know it is heartbreaking to not be able to play when you want to just do those simple things with your daughter. Kids are resilient but it still feels bad in the moment.

Catra, I have no idea what age they recommend potty training now but my son had to be potty trained by two and a half to start preschool and it wasn't difficult. Have you tried her in pull ups yet? Maybe she could manage those?

Pull ups will be the back up if this weekend doesn't go well (going to start potty training tomorrow). She can hold it all night and wake up dry...so it's probably well past time to potty train her...but between my physical difficulties and everything else it was just more convenient to NOT potty train her (the thought of having to clean accidents or try to get to the bathroom quickly while out and changing clothes multiple times a day and extra laundry all still have me wondering if it's worth it...lol). But the way I see it...it's either train her now or it will have to wait until February. My husband is of the absurd opinion that she will just decide to start using the potty and magically be potty trained on her own with no accidents. He is LITERALLY no help in this department so it's got to be me or nothing. I THINK I am ready to try it this weekend and if it doesn't take then we'll just have to wait and that's all there is to it. Not going to stress too much...it will either work or it won't.

This video has some good tips: Potty training girls (ages 3 to 4) | BabyCenter.

There is no reason to stress about this. If she struggles she can wear pull ups at night and or when you go out to avoid accidents but it'll help you if you no longer have to change diapers. The bigger she gets the harder this must be for you.

She really is getting old enough where you don't need to lift her out of bed either if the setup is for her height. You can come sit on the bed and talk to her, sing to her, turn on music, etc.

She's still in her crib. She doesn't try to get out and really likes it. Sleeps 10-12 hours a night...so I really don't want to take her out of the crib yet because I KNOW my husband won't help with putting her back in bed and her room is upstairs and I sleep downstairs. Maybe after the DRG that will change though...but for now we are pretty set on sticking with the crib vs messing with her sleep routine.

You know, you might need to have a talk with your husband about him helping more.

If you have a monitor with a camera you can see if she is sleeping soundly through the night and if moving to a small bed would effect anything? Or maybe drop the crib railing and give her a stool to step down?

Usually having access to a potty through the night or in the morning is needed if she isn't going to have a diaper or pull up, so you might consider sticking with one just through the night then.

I was relying on my "good" arm before my surgery and now I can't manage much with either arm. I know your legs are maybe worse than your upper body? But you do need to protect it as well, so if you're not ready yet to make changes, just try to be proactive when you do get sore.

If you're renting perhaps you could look into moving to a single story?

You maybe already on top of all these things but I suspect you just might have a tendency to suck it up too often when things could be made easier for you...

And yes...though more regular trips to the potty will be harder...it won't actually be bad once I get the DRG if the pain relief is like the trial. But diaper changes are a killer for my shoulder...so I'm very relieved that those will be a thing of the past. She's done great today. I put a gate up and locked us in the kitchen with a little potty (And lots of stuff to keep her entertained). 5 successful pees in the potty and no accidents at all. Daddy is taking over now and I am going to soak in a warm bath because I can barely move at this point. But so glad she was easy on me today for day 1 of potty training. Daddy is home for days 2 and 3 so those should be much easier on me. Thanks for all the tips and support. I appreciate all of it so much.

I was so nervous moving #2 to a "big boy bed" and it ended up being for no reason at all. If she sleeps 10 - 12 hours already, and is dry all night, I don't think you have anything to worry about there. And it will actually make tucking in much easier. No lifting at all! At her age she's ready for the independence. I would just stay up in the vicinity until I knew she was asleep, then you don't have to worry about trips up and down stairs, since clearly once she's out, she's out for the night.
As for potty training, sounds like she's ready!

Thanks for the tips ladies! I will definitely consider all of that as we transition into the big girl bed and everything else.

Potty training went really well...3 days of no accidents and she would run to the potty on her own with no prompting. She's an awesome little girl and sometimes I feel like I have it very easy (despite my CRPS issues).

I want to transition her to a toddler bed...but just not right now. We own our home and I've been sleeping downstairs because it's easier to not have to make multiple trips up and down, and since I barely sleep it's easier to just be downstairs with the tv and not wake my husband up when I get up, and both our bathrooms are downstairs. During the DRG trial I was able to go up and down the stairs no problem really...so hopefully once the permanent one is in and I'm healed up from the surgery I can be upstairs and that will work out better and be a better time transition into a bed for my daughter.

I agree that my husband needs to help more...but at the same time I realize how hard all of this has been on him too and he just looks SO tired all the time that I try to let him sleep and rest as much as he can. It means I do more than I should...but it won't do either of us any good if he completely runs himself down.

And my left arm is essentially useless at this point. ANY reaching, lifting, etc and it feels like someone is trying to rip my arm off. Obviously this makes everything hard. I still try to use it as much as possible to avoid frozen shoulder and making things worse...so it's not immobilized in any way...it just hurts really bad. My right arm is the "best of the worst" and that ends up being prone to flare ups from overuse. But like everything else, I've learned ways to do things that make everything easier on me...it's just hard when my baseline is an 8...I'm always just one little thing away from a flare up.

Anyway...the great news is that I DID ask for help from my husband's family for the 3 weeks after my DRG implant and I was able to get all but 2 dates covered by them...so just a couple days for my mom and dad to help out and I feel very relieved to not have that stress right now. It's so hard to ask for help but I feel like a large burden has been lifted.

Thanks again everyone...I always appreciate being able to talk/think things through with you guys. :)