United Brachial Plexus Network, Inc.

I was just wondering if it is just me and my family or if others have this kind of thing happen.

Today the kids were showing me how they could do cartwheels, headstands, pushups, etc. My oldest (he is 14) asked both my husband and I if we could do these things at their ages.

I know they didn't mean it like I was feeling but, it still hurt. Reminding me of all the things I couldn't do, and the fact that they forget that I wasn't like them.

Does your family sometimes forget and say or do something to remind you of what you can't do?

Kimberly
My family forget my own siblings will say things like... "I have such a pain in my shoulder and now I can't lift my arm for almost a week" DUH! I never lifted my arm... but they figure I am use to it. Just about a week ago my sister in law was complaining to me about her shoulder and arm and how hard it was not to be able to lift her arm and it will take about a month to heal... I really wanted to tell her to shut up and stop complaining because she will heal... Of course I did not I listened but found it hard to give her sympathy. She has been married to my brother since I was 11 so she knows my limitation. Sympathy/sensitivity was not something I ever got for not being able to do certain things. No one ever accepted the fact that I could not do something because I managed to do things with compensation and not complain about the things I could not do because they did not want to hear it. I once said I wish I could take my change in one hand while holding the baby in the other... everyone gave me ideas on how to get my change... they really did not get it! They did not understand I knew how to compensate I just was tired and frustrated with it sometimes.

My kids will tell me how then never really noticed I could not do things and were really shocked at how many things I could not do... they claim it never bothered them. Now that they are adults and parents they are more aware of the fact that I am OBPI. But that is only because I became so involved in UBPN. They are MUCH more sensitive to the things I can't do... But if I say I can't do something they giggle and say ops I forgot! A few times I got annoyed at them and their response was " Mom you never mentioned it before so we forget"
I guess I should be glad that it did not impact them... but sometimes I feel a bit sensitive about it too.
Your children really don't think and teenagers have no idea of what limitation do to our lives. My oldest grandchild does not like me to mention my arm... my daughter said she does not want to hear because she thinks I am perfect just the way I am...
She is only 11... my grandson has way more questions then my own children asked. I guess we hide it so well and complain so little that the kids forget... wish we could sometimes.
I notice some things my children do so naturally with both arms and get a twinge once in awhile. I think it is normal to feel sad about the things we cannot do and we should be allowed to say it out loud... but often we kept it quiet because no one was like us and therefore could not relate to our frustrations and losses.
Kath

Most of us don't really make a big thing about our OBPI, & I think our family just naturally "forgets" about some of our limitations. They all know that I need help lifting grocery bags, laundry baskets, & other somewhat heavy objects. They are all willing to help out, but not always WHEN I need or want the help. That's what I find frustrating. Sometimes, I find it easier to do it myself than waiting, & I stubbornly lift when I shouldn't. Even though I know I am only hurting myself, on the inside I'm also mad @ myself because of my limitations. I remind myself that it could be worse, but once-in-a-while, I guess I just need to feel sorry for myself! As I get older (I am 50), & my ROPBI arm gets weaker, while my so-called "good arm" get overused, I get more & more frustrated with myself.

My father is real bad at this and I think it comes from the fact that he refused to acknowledge that I had a handicap growing up. He'll often complain about pain in his arm and back and how he can't do something and I just sit there and think...."welcome to my world". My Husband never thinks about it. Because he's never around when I have to really use my arm and can't he doesn't understand that there is a problem.

I am glad I am not the only one!! I was starting to thing I was being overly sensitive to feel irked about all these same kind of things you all have mentioned.

There has been more than once I feel like my brother (who is particularly insensitive about it) should have to go at least a little while with one arm strapped down to his side....just to recognize how difficult it can be sometimes.

I know I am soooo guilty of the compensation and covering up...often doing things I probably shouldn't because I am uncomfortable, or sometimes even, ashamed to ask for help.

Thank you for letting me know that my feelings are completely normal. It is really nice to feel "normal" sometimes:)

Sure they forget at times. My wife recently purchased an appliance that I have trouble using because it's built for right handed people. She said after I struggled a little with it, "Oh my gosh, I never thought about your arm. I'm so sorry". It's OK because, like you, I've been adapting all my life to things like that.

My kids probably are more aware of my arm now that they are adults then when they were younger. I couldn't do hand stands but I could do somersaults and gave 3 legged horsey rides!!

Finally, I think that you shouldn't be ashamed of asking for help although I understand your reason not too (my wife often tells me to ask for help but I'm too stubborn sometimes). Keep in mind that by asking for help, you're bringing awareness to that person and they will likely feel good about helping you. You won't be asking for help all the time but when you truly need it.

John P.

Hello everyone,....My 2 cents on this:
Kath & John pretty much said everything I've experienced and still do.I will add a story of a real felt insult was when 10 years ago a neice & nephew gave me a Spa MANACURE for Christmas. I about choked on a thank you(it was in person). I excused myself & went to the bathroom for a little silent cry with a towel over my mouth....That's only just 1 family incident!~Carolyn J

some of my family sometimes forgets about Jamie's injury and they'll try to pull her up when she's lying on the floor by pulling on both her arms.

http://www.rsdhope.org/Showpage.asp?PAG ... CT_ID=2953

A letter to the family and friends of RSD Chronic Pain

Angela
Thanks for posting that note on RSD pain.

It is so true but after years of dealing with this injury I truly believe my sibling would never read the letter...
I also believe people don't really want to hear how you are or whats bothering you because something has always bothered you.

I think families deal with the sensory intergration issues and the long term problems of this injury and get use to YOUR pain while you deal with it and after a while shut down. You don't even want to hear your self and I think some of it we are use to... in fact I did not know how much pain I had until a drug took it away for a few days... going back to it was not easy but the drug is now off the market and I had a reaction to it... Vioxx.

I mentioned my arm to one of my older cousins ( she is 18 years older)... She said it was bad but I was cured years ago... why was it bothering me now... She never notice all the struggles dealing with day to day life activities. I think families often wear blinders. Maybe its a good thing because we learn to be independent and self sufficient but sometimes it is annoying.
Kath