Yeah he is a little rascal, he knows how to avoid consequences from Mom. But when I get Dad involved watch out, he knows better. That sound slike it was a milestone moment between you and your Dad Michael, thanks for sharing it.

just like the title says.even though ive been disabled since '91',i still let myself fall into guilt & shame. why,because if your disability cant be seen w/the naked eye upon sight,it cant be that bad,even seemingly well intentioned people say they understand,and then ask you something like'hey,i know someone who's hiring.now,if i had a leg missing or such,they would'nt do that.after so many years,you'd think society would be more informed about disabilities,the people who have them etc...if someone is jogging down the street and they are dressed well and clean appearance[me],why cant that bum work...ignorance!! raising my 13 yr. old by myself is what keeps me ALERT![OCD,ADHD,PTSD,MAJOR DEPRESSION,nervous breakdown in 91.eventually tried self medicating ,almost died of alcoholism[stay away from ism's]...i pray every day and try to remind myself,"dont quit 5 minutes before the miracle[which could be tomorrow ,next year or any moment now,one never knows.anyways,good to read your posts.yours truly,kennyjack.

PS sorry for whining,you guys were so positive...have a great day...kennyjack

I have to admit you're right about the way people assume and judge those people with disabilities that can't easily be 'seen' it's not fair but our society seems to still place so much weight on appearances, it's just the way it is still unfortunately. I definitley feel for you KennyJack, I don't get that kind of judgements thankfully but I do get a lot of:

"Wow you get around really well, how do you do it?" or "My hat's off to you darlin' you are amazing..."

That is from total strangers when I go out into the world, usually I can see others looking at me getting around with admiration. I always tell the clerks when they ask, "Do you want help out with this?" I reply, "Nope, I got it down to a science, I am my own shopping cart." And then I take the bags and load up my lap holding the handles in one hand and using the other one and my foot I navigate to my car, sometimes it's awkward but I feel empowered to do this and proud I still can, you know?

It's not easy being disabled, and I have found that you should enjoy what things you still can DO and not dwell on the things you can't. That just leaves you feeling empty and bad inside. I'm sorry people treat you that way KennyJack, but at least you can talk about it here and people here won't treat you that way. If you need to vent we're here for that too.

I know I have terrible feelings of guilt because of my disability. I'm a lot like KennyJack in that my illness can't be seen from the outside, unless you look deeply into my eyes. But I live with constant pain and weakness, and I know it has caused my children to experience certain disappointments. I can't always make it to their ballgames or recitals, even though I try my best to get to as many as I can.

But like others have said, I spend more time with my children now than I ever did when I was "normal" and working. I listen to them and do things with them, and we have bonded in a way that is so much more special than what we had before. Even my seventeen-year-old son trusts me, and comes to me for long talks and advice.

But the one single thing that keeps bothering me, even though it probably sounds silly, is that I haven't been able to pick up my little girl and hold her since she was five. That was her age when I became ill. She's a very small statured girl, and she loves to be held. So even now she is always coming up with ways for it to seem like I'm holding her. She will get behind me and lean over my back and shoulders when I'm sitting, or stand on a step-stool and wrap her arms around me when I'm standing. And when she does this, she will put just a portion of her weight on me and say in that wonderful bright voice of hers that I am "really sort of holding her". I'd love to be able to pick her up just once, or give her a piggy-back ride. I know it would make her day.

Oh that is so sweet! I can appreciate that feeling Idealist, I am glad you posted about it. My son weighs too much to be picked up anymore at ten but he likes to lean on my lap such as it is and I put my arms around him as he balances on my one knee and thigh. I miss holding him, I nursed him until he was just shy of two because of the reports that breast feeding helps with preventing certain cancers and it runs in the family, so I wanted to give him the best start I could. I attribute a lot of his affectionate nature to the close binding we formed due to the nursing.

Sometimes when I look at him I still see the cute baby he once was and I miss holding him. It's a comforting feeling when I hold my arm around him on the couch and look over at him and see the baby he was, it's really a nice feeling. I know he liked being held a lot too, and he likes it when we sit on the couch with him like that. When he was a baby I could hardly put him down he'd cry to be picked up again. I know it's really a primal urge to want to hold our kids like that, so it's great that your daughter reconnects with you like that Idealist. I was sitting here seeing it in my mind as you described it. Thank you for posting, I really appreciate you sharing what you did.

Well,i feel like i am a big burdern on my daughter.
She ,of course says i'm not.Yet i feel as if i am!
I don't feel like walking around the mall anymore,just because it's fun to window shop.
I go to the store when i have to and get right back out!
I have a picture of us up on my fridge from one of those silly
photo booths.It's been 3 yrs since we have gone alone for fun!

We used to play around by poking one another and wrestling around..Well now she says she is afraid to touch me because there aren't many places where i don't hurt now!
We are VERY close and we hug all the time,but we don't play around like that anymore.
I had to stop the long bike rides we used to go out on...
When i am in one of my flares..She is my caretaker!!!She wont leave my side!!
I tell her all the time.I am suppose to be taking care of her.I worry that i am scarring her......
I don't know what i would do w/out her...
I just hope when she gets older she doesn't have resentments toward me.

Kennyjack, as far as I am concerned we are all entitled to have a fit and fall in it, just don't stay there for long. I agree with you as far as unseen disabilities. That makes it a lot harder. I have RSD and there are days I am good and others not so good. I am good at concealing it to others, not hard when you only go out when you feel like you can. Even hard for my parents to understand, I don't believe they get it either. My husband and 15 yr old son are great. Although my son sometimes has a hard time with it, who can blame him, there are days I have a hard time also. Let me be honest, there are days I have a fit and fall in it but eventually I pick myself up, dust myself off and move on...well, until the next time. LOL We are just reacting normally to our stressful lives and lets face it, it is hard to not have someone fully understand how we feel. It leads us to feel disconnected, like we are on the outside looking in. We are our own worst critics, we sure don't need it from friends, relatives, or strangers. We are all doing the best we can and I'd like to see how they would handle it if the shoe was on the other foot. Our life is hard enough without the so called "help" some want to give us. But I consider myself a "can do' type of person and I have no trouble spotting stupidity or ignorance, if someone continually brings me down I just move on. Life is too short to surround ourselves with people who make us feel bad, there are others who make our heart smile. Ignorance is forgiveable but stupidity is another thing. My favorite saying is "Lord, save me from stupid". Keep praying, have faith and don't be so hard on yourself. Like my grandma always told me, "Life is good, if you don't let it wear you down". May the Lord save you from stuipd also. Lol Marilyn

HI I am a single mom and have had RSD since 1997. I have whole body RSD so it is hard for me some times to type and write ..I have 3 children I have raised my son is 23 and my other son is 19 I have a daughter who is 16. she is a great deal of help to me. there are days I cant get out of bed. I was in a wheel chair for 2 years and worked hard to get out. but now have a broken scs and trying to find new pain dr cause I have moved ... so I am with out pain medication also ... I am in a lot of pain but .. as far as spending time with my children they help me and come to me to talk, because we were close when they were growing up and still are.. just take one day at a time and he will see how much you love him and wont be such as rascal all the time