Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I've had RSD for 14 years. My mom knew about it but she passed away. A few family members knew back in 2003 but not WHAT it was or how I controlled it. My Husband knows, obviously, and a select few of my friends. They don't know how bad it can be, or what I take or how it affects me b/c we don't live anywhere near each other. My Dad knows, and commiserates b/c he has a severe back problem and has for 45 years.
Anyway, when we see family and my RSD is BAD, I often limp w/o realizing it. I've told family (especially back when I used a cane) that I have a bad foot and there's nothing that can be done but I'm fine. Most of them accept that. I don't EVER want to be known as someone they have to worry about.
One of my BFFs has MS and she shared that with me, so I shared RSD with her, and we have the BEST vacations. We're the same age (3 days apart) and we are very much alike. We go to NYC every year to see Broadway shows and both of us have been to NY enough times that we know all we want are the shows-we stay in Times Square, explore new places to eat and see all the shows we can fit into 2-4 days. I don't have to lie to her or overdue things b/c she GETS it. We were just in New Orleans a few months ago and had a blast. But when I vacation with anyone else I overdue it and end up in a bad place.
So in 24 days I leave for NYC and she and I will have our wonderful theater escape. But 4 days later I leave for Scotland where I meet up with my boss and her boss, and all the people I write for. It's an annual trip/meeting and last year's was in London during the volcanic ash incident. I was so scared about not getting home in time for my son's 1st birthday that I stayed up night after night watching the news (and in the UK, the news is always just a bit more grim than in the US.) Last year my boss was wonderful about everything and made sure I had time for rest, etc. Of course, our activities were cut short due to the ash incident.
This year, since everyone will be there, I'm really nervous. There are meetings scheduled but also, side-trips which I normally love. But the trips are not JUST with the boss who knows my problems, they're for everyone. And I need to write everything up. There are a million people who would take this job if I lost it or gave it up. I love my job. But I just got a message from my boss who is telling me I should just open up to the rest of the people and they won't hold the RSD against me. Maybe not, but to this point I haven't missed a thing, messed anything up, etc. My fear is that I will miss something due to my foot, and they'll now know that I have a serious disease and blame THAT and not what was really wrong.
I honestly don't feel comfortable sharing this info with others. My job is free-lance (although it is every month and more in the summer) so I contract out. I like my boss a lot and she has been amazing to me. For instance: after the deaths of my son and mother within 6 months of each other, she arranged a trip to Hawaii for my hubby and I. She knows I love Mexico and the Caribbean so she saves those assignments for me. She even got me a 1st row ticket to see Bette Midler's opening night in Las Vegas!
I trust her, but I don't trust the people I don't know as well. One guy has a sister who wants my job. Now, I can go in with "I have a bum foot, pay no attention to it," or I can tell the truth. But the truth isn't always the best way, is it? Not when people judge you for it.
I'm also considering telling certain family members as they are coming to visit us this summer. We have a pool and if the water is too cold, I can't go in. It's difficult to explain why I'm the only one not in the pool, and my mother in law who HATES me, is always picking at that fact.
Funny, I don't mind telling hotel employees or airline employees or even people I sit with on the plane, but I don't want to tell all my family and friends. I've kept it quiet for 14 years by being active, taking meds as prescribed and resting when I can. And the other problem is, once they know what RSD is, chances are they'll ask what I take for it. THAT is something I DO NOT want to get into. Prejudice against narcotics is rampant.
Sorry this is so long, it's picking at my brain and I know all of you have had to deal with these issues.
To tell or not to tell, THAT is the question.
Anyway, when we see family and my RSD is BAD, I often limp w/o realizing it. I've told family (especially back when I used a cane) that I have a bad foot and there's nothing that can be done but I'm fine. Most of them accept that. I don't EVER want to be known as someone they have to worry about.
One of my BFFs has MS and she shared that with me, so I shared RSD with her, and we have the BEST vacations. We're the same age (3 days apart) and we are very much alike. We go to NYC every year to see Broadway shows and both of us have been to NY enough times that we know all we want are the shows-we stay in Times Square, explore new places to eat and see all the shows we can fit into 2-4 days. I don't have to lie to her or overdue things b/c she GETS it. We were just in New Orleans a few months ago and had a blast. But when I vacation with anyone else I overdue it and end up in a bad place.
So in 24 days I leave for NYC and she and I will have our wonderful theater escape. But 4 days later I leave for Scotland where I meet up with my boss and her boss, and all the people I write for. It's an annual trip/meeting and last year's was in London during the volcanic ash incident. I was so scared about not getting home in time for my son's 1st birthday that I stayed up night after night watching the news (and in the UK, the news is always just a bit more grim than in the US.) Last year my boss was wonderful about everything and made sure I had time for rest, etc. Of course, our activities were cut short due to the ash incident.
This year, since everyone will be there, I'm really nervous. There are meetings scheduled but also, side-trips which I normally love. But the trips are not JUST with the boss who knows my problems, they're for everyone. And I need to write everything up. There are a million people who would take this job if I lost it or gave it up. I love my job. But I just got a message from my boss who is telling me I should just open up to the rest of the people and they won't hold the RSD against me. Maybe not, but to this point I haven't missed a thing, messed anything up, etc. My fear is that I will miss something due to my foot, and they'll now know that I have a serious disease and blame THAT and not what was really wrong.
I honestly don't feel comfortable sharing this info with others. My job is free-lance (although it is every month and more in the summer) so I contract out. I like my boss a lot and she has been amazing to me. For instance: after the deaths of my son and mother within 6 months of each other, she arranged a trip to Hawaii for my hubby and I. She knows I love Mexico and the Caribbean so she saves those assignments for me. She even got me a 1st row ticket to see Bette Midler's opening night in Las Vegas!
I trust her, but I don't trust the people I don't know as well. One guy has a sister who wants my job. Now, I can go in with "I have a bum foot, pay no attention to it," or I can tell the truth. But the truth isn't always the best way, is it? Not when people judge you for it.
I'm also considering telling certain family members as they are coming to visit us this summer. We have a pool and if the water is too cold, I can't go in. It's difficult to explain why I'm the only one not in the pool, and my mother in law who HATES me, is always picking at that fact.
Funny, I don't mind telling hotel employees or airline employees or even people I sit with on the plane, but I don't want to tell all my family and friends. I've kept it quiet for 14 years by being active, taking meds as prescribed and resting when I can. And the other problem is, once they know what RSD is, chances are they'll ask what I take for it. THAT is something I DO NOT want to get into. Prejudice against narcotics is rampant.
Sorry this is so long, it's picking at my brain and I know all of you have had to deal with these issues.
To tell or not to tell, THAT is the question.
If you can hide it, do so. Once they know, there's no going back. You can't un-ring a bell.
Hugs to you. I've got RSD too.
It's a long story that is still unfolding, and someday I should write a book about it!! lol
I urge you not to tell your co-workers. You will regret it!!!!!!!
It takes a lot for me to trust that others will understand. Many have heard things from doctors like the one posting here who say that if I just put forth enough work at getting better then I won't need the meds anymore.
I have found that this simply is not true. In fact, nothing could be further from the truth. No amount of work is going to put back damaged tissue from illness. So I keep to myself and only share in safe places like here at DS.