Since your diagnoses of RSD/CRPS or since its progression.

Have you found family and or friends starting to treat you differently? I'll give you my short story!

My best friend Kevin who I have known for 25 years lives in Texas. I haven't seen him for a year. He comes to visit me 3 weeks ago for 4 days.

While he is here I have a bad flare up of pain one day. It puts a crimp in our plans. He knows the area I live in real well so I gave him the keys to my car and he spent the day visitng old friends and so forth alone. I felt really bad but there was just nothing I could do. I was just hurting too much.

On the morning I was taking him back to the airpoirt he made the comment that he felt bad about coming and visiting me because he felt like I had to go out of my way to entertane him when I was in obvious pain. Nothing could have been further from the truth. He also said he wouldn't be coming around as much anymore because he doesn't want to put me out. In other words he doen't feel comfortable around me because I walk with a cane and am in constant pain. I was so upset I didn't know what to say or do.

Has this ever happened to you????

Mark

Hi Mark,

I pity him, if he is ever needs his friends for support. He needs a reality check. Not all people are like this. This saddens me because having quality time is such a good thing for us.

You have good days and you have bad days. And if for one day out of four you let him loose, gave him your car and he wasn't deserted in a town that he didn't know well. He visited with other friends and that was inconvenient for him...Hmm.

I think you being upset with him is not inappropriate. He feels uncomfortable? You are walking w/ a cane and in pain 24/7. Put him up in your home. Do you mind me saying that he's selfish?

Next time he decides to come to town. Suggest that your condition isn't suitable for in-home guests any longer. Then you can go out to dinner when it's appropriate for you and you feel well.

I'm so very sorry, Mark. But we need to put us as priority #1 once in awhile and our mental well-being is a very important part of our RSD.

dp.

i totally understand your anger..........your friend is being selfish, as he doesn't know how to handle your pain.............
like dana said you need to make YOU your number one priority for now..........
i have a good friend who also is in chronic pain, so she understands me totally....but most of my other friends don't realize the pain we have to deal with, so they distance themselves so THEY are not uncomfortable...sad but true...............
even my brother, whom i love dearly and he would do anything for me, but he doesn't understand the depth of the pain i have to deal with...his attitude is 'well. ya hurt your ankle five years ago...get over it.'.........and that hurts and really sucks.....................
if only they could live ONE day with the pain we endure.................................
like you always say mark, chin up and keep on truckin............................
ready for another virtual trip?????/// i sure am.........lafff

Hi Mark,

Yes, certainly people treat you differently. I don't tell people unless I must and I almost never must (specially when ya gotta work, as you know...)

Now I'm not saying I'm right to do this, it's just what I do and I do it because I myself am terribly upset when I see my friends in pain or distress, plus its almost impossible to explain it properly - hey, even doctors can't. But even with good friends, I just say it's a nerve pain disorder and always underplay it. However, as you've just experienced, if someone's actually in your house on a bad day, you can't pretend.

A while ago I visited a friend with Parkinson's. He'd deteriorated since I saw him last - and I felt dreadful that I'd put him to the trouble of coping with a guest; he could hardly get around and I found myself wondering how he'd managed with bedsheets and soforth. I decided that I wouldn't stay actually with him in future, if I was in the area I'd stay somewhere nearby - I know other people in the area, so it wouldn't seem too obvious.

Perhaps that's how your friend felt. Mind you, I would never, ever tell my Parkinson's friend, I wouldn't want to hurt him - or make him think that it was the *fact* of his illness that had changed my mind.

Then there are other friends. One, who I love dearly but is as annoying as hell, has a withered arm and leg through polio. It's not painful, but she's slow and incapacitated. She lives in the US but visits HK quite often and until recently would stay with me a few days. She's naturally a touchy-feely person, and she will say "Whadya mean it hurts? If I go like this.. (pokes me) ya mean?" pinches me, bats my arm, jabs a finger...OMG. Till I said "Enough already! You're not staying here any more!". Having said that, she's coming next Friday - but for one night only (I hope). She says "Well, I just don't understand it, I'm disabled and I don't act like that.." I say "Listen carefully: it's a *P-A-I-N* disorder. I will wear a suit of armour till you've gone."

I don't know what the answer is, but I'm so sorry it's happened to you. Apart from anything else, if there's one thing we need more than anything, it's friends. Maybe he was just trying to spare you trouble and just isn't good at expressing himself? I think I'd look at it like that, you two go way back, after all.

So. You just keep that chin all the way up there!
Take care, all the best..

count me in too, mark....(is this a poll?)......i don't know why my siblings find it so hard to believe what i tell them, but they seem to have doubts about my pain, my sensitivity to vibrations and/or noise, all the usual things......the one family member who never questions what i say is my bro-in-law (actually hubby's sister's hubby)....he has MS and until he started using a cane had nasty comments directed to him about being "drunk in the morning" or "ashamed of himself".

i said something to my sister about this not long ago, and she said "but u look fine" (screaming, banging head against wall).....as i pointed out to her, so does my hubby, who has had seerious cardiac troubles for almost 30 years.....people have this image of disability meaning a wheelchair, and it makes me nuts.....so many conditions don't show!

we had a long talk about all my symptoms, and she's been a bit more understanding since, but i don't know if it will last, or if i'll have to educate her again in the future.....sometimes i wonder if it's even worth it.

about your friend.....tell him u wouldn't invite him to stay with u if u couldn't handle it...... if he's uncomfortable with your illness, that's his problem....none of us asked for this, none of us want it.

like claudia, i wish they could live my life for one day.

Most everyone treats disabled people differently. Some good, some not so good. Friends and family have a hard time dealing with it. I learned a long time ago to never ask any of my family members for help. They just do not understand that I cannot use my arms or hands for anything. I have a family member who works in Disablity Services here in Oregon, she treats me like I have the Plague. When I almost died last year (heart rate went down to 10) she did not come to the hospital, call, or see me for 3 weeks. I don't know why, but it hurts alot. This is the life we live, and I am going to make the best of it. As I write this, the sun is shining (I love Oregon) and I am going to go out and enjoy whatever comes my way.
Condor

All of you can relate! I am surprised! I didn't know if it was just me or not. Sometimes I felt like I farted and it lingered a long long time. No one was coming around me. But now I know that wasn't the case. Condor - I so can relate to family treating you like you have the plague. All of my family live in Northern Maine and I rarely ever hear from any of them and when I do they do not want to hear about what is happening to me. If I bring it up, their response is usually something like "Oh I'm so sorry , hey did I tell you about blah blah blah". They are very quick to switch subjects. Makes me mad and sad all at the same time. I never asked for this and I feel like I am being punished constantly. But you are right. Enjoy the sunshine! And I need to start practicing what I preach! Ehhh Chin Up!?

Mark

My sweet Mark....don't like hearing this at all but totally understand. My whole life has changed. Long story and won't get into it here but it sucks you know? Gettin real tired of the crap. I feel your pain honey, I swear I do. Don't quite know how to help since I can't help myself LOL Blind leading the blind. But know this. I love you very much and we all deserve to be treated with respect. That is what matters most to me nowadays...RESPECT....Didn't Aretha say it all? I am just getting ****** now. hmmmmmm, maybe it is about time huh? LOVE YOU