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.
The friends I have made since my diagnosis know but again only a couple understand.
My family on the other hand , like my sister, brother, mom and dad, know but but don't understand and everything is fine as long as I act "normal" they came for a visit a couple month ago and it was hard on me because they kept making comments about everything I couldn't (or in their eyes wouldn't) do and I spent the entire time trying to hide my pain (which didn't work very well) the other family members don't know because I don't talk to them except for Christmas cards and the occasional e-mail and my dad doesn't tell anyone.
To my family (the ones who know) my RSD is like the black sheep in the family (the one nobody talks about). It was easier for my dad to handle when I got pregnant at 16 then it is for me to has RSD.
Sorry I don't have any words of wisdom, I just wanted you to know your not alone in this struggle.
LOL, would you want to know that John Doe took Viagra because of his ED? I bet he'd prefer to not have to reveal all his meds before the trip! Or that Jane Doe has depression and anxiety and is on anti-depressants and anti-anxiety meds? Full medical disclosure is irrelevant to your job.
take care and safe travels,
Pinky
No one but your Doc and you need to know that you are sick, I understand telling your boss; specially with the kind of relationship that the 2 of you have, but telling anyone else?? HECK NO! If you start limping or anything like that during the trip, just tell them that you slip and fell in the shower, anf that the Doc told you that in about 4 weeks it will start getting better, and leave it at that.
I always say that our conditions, and what we take for it, is our business and no one else needs to know. In my case my mother and sister's know, my Doc's of course, and my boss because he is a friend of the family for ages, and of course the people here, I have not told my friends or other that I don't see often, to me this condition is on; a need to know basis, and the do not need to known. I hope this helps,
Hugs,
But now THAT is rearing its ugly head again and the cane will be revisited soon if the RSD doesn't stop spreading. After 14 years it has finally begun to creep past my calf to my knee. I do better with a cane but I'm stubborn about it. I left it on a plane, anyway, so I'd have to get a new one. Hopefully I'll get past swimming season before I actually NEED it.
It's MY business. Oddly, my 11 year old niece knows -she travels with me sometimes, and she looks out for me, making sure I rest my foot and being so sweet. She wouldn't understand about the medication, she is too young. But she knows b/c my foot turned blue when I took her to Cedar Point last summer. After a day of standing in line and riding rides, she "suggested" that we leave for the hotel and rest up before the next day. Kids have such an innate wisdom about things; she amazes me. And she hasn't told a soul.
Meanwhile, I plan to keep it to myself during the upcoming trip. The 1st days in NYC are fine- my BFF knows and she suffers from MS so we both make sure we rest, etc. Scotland will be a bit more difficult but it's doable. Thanks for all the kind words, you're all very encouraging. :)
A lot of my clients know that I have 'back problems' because I've had to make the necessary decision to call them and reschedule many times. Every one of them has assured me that I should never hesitate to do that...they understand completely. Most of these people have stuck with me for so long that we've become friends, also. Getting their hair done becomes almost secondary. My salon is such a pretty, relaxing place that many of them refer to it as their 'therapy'!
I don't, however, give a laundry list of the labels that have been tagged on me. The most I might say to a select few, is that I live with chronic pain. Note the choice of word...'live' instead of suffer.
I vote for following your gut! Share as much as you're comfortable disclosing with the people you feel 'safe' with.
We aren't required to tattoo our conditions on our foreheads!
Best of luck and gentle hugs,
Cherry
Also, Im quite open with what meds I take but I try and make big jokes about, say if I do something stupid, I'll say 'oooo its the morphine making me crazy' and people laugh and eventually Ive noticed people see it not as a big deal because I dont make it a big deal (if that makes sense). On the other hand..no one needs to know, its your life and if people cant accept you for the way you, then f*** em! If you still do your job well, and your a loving family member and a good friend thats all that should matter to other people and if they wana be hung up about meds, or how your pain is etc, you could just say its been this way for so long so whats the difference?
Hope whatever you decide to do it all works out okay! Hope your feeling well take care xx
I keep an emergency card in my purse and all my ICE contacts on my phone have one as well. Otherwise I do not feel it is anyones business.
It is a very personal decision and I am sure everyone is different as all our families are different.
Hugs
Kallie
With that said, I would just tell the people you feel comfortable telling. As for work, do the best you can with the trip, maybe you can get an amigo or something. However, if you find that you can't make it, try having a meeting but imphasize that this will in no way affect your proformance, and you have been doing a good job with it in the past. You are not asking for pitty, but understanding. Sometimes being open and honest with others is the best. However, in the end, regardless of what anyone else says, you have to make the decision that you feel is best, so I wish you the best of luck with that, keep us up to date on what you decide. Take care
I want to be me and they know I am not a big complainer and I am still me and the only difference is now that I do not work anymore which still throws people for a loop since I worked so long and so hard.
I think my family knows more and sees me go through those bad days but my kids like that I am home and so do I. I know that is not the best way for it to happen but that's my life if it is not one thing it is another.
I think bad luck is my best friend. I am ok with it LOL
I can hold onto carts at stores vs using a cane. I can hide it from people who don't know me but anyone else who does know me or also suffers with CP fortunately for me are the ones who understand me the best.
My Mom was my caretaker for the 1st few years of RSD not being someone to enable me to do less but knowing by living with me how bad the pain was as much as she could understand.
Funny how even on the phone I can never hide my pain when it's above my normal from my Mom esp. or others in CP.
They hear it in my voice.
Personally I feel you don't need to share this with anyone you don't feel comfortable doing so with. If there are people that are "after your job", they could try to use this against you in the future. Why take that chance?
RSD is very hard to hide when the pain is so relentless & simple things can cause flare ups making our pain even worse. It doesn't mean we have to label ourselves as the disease or pain we suffer from.
I hope this helps