I just put this in a reply to heather g. Sorry heather, this is slightly off topic of
what your friends did to you.
Many of you have read the "letter to loved ones" provided by Kevscar.
it is so very well written & said.

I have wanted for months to send this to loved ones, especially to my
grown kids.
I'm afraid they'd say or think "jeez, you didn't need to "go off" like that.
Since I've not been working they seem to have an attitude of how nice it must be
to be acting like I'm retired early (not exact words).
In different conversations, one of them points out hypothetical jobs I
could do, how she has Crohn's disease (and works). I so much want to point out there's specific medicine to keep that in remission.
RSD does not have one.
I still try & do all I can for them & grandkids. I don't complain to them when i can't or even tell them how that is. I just don't do it.
Maybe I just don't have the nerve (bad pun) to speak up.
Any comments??
_______________

Hey - I just posted this reply to you on the other thread...

Hey Di! I think you need to speak up and give this to those loved ones. I gave some family members and friends something similar to this and it helped. Sometimes when they read something like this it puts it into a little different perspective. What Kevscar posted is does not read like you are "going off", it is polite but matter-of-fact. There is no way they will ever understand fully, but this could help get them closer to understanding and showing you more support and empathy. Also give them a copy of the McGill Pain Index (my husband said that is a real eye opener).

And oh, I hate when someone asks me "so, are you enjoying your retirement?" REALLY??? I am only 47, I am not retired, I am disabled...I cannot work! This is not my choice!

Hi Az-Di,

Sometimes dealing with hurt feelings due to lack of compassion or understanding of others is almost as painful as dealing with the disease itself. It sucks and I'm sorry that anyone dealing with long term illness has to go through that part of it.

One thing I have found helpful is giving small easy to understand descriptions of what it is like to live with CRPS. For instance one example that I recently gave to a friend who is a rock climber and has had many 'rock rashes' while enjoying that sport - I asked her to imagine the feeling after slamming up against a rock, where skin is exposed to air and then what it is like to clean and remove dirt from it with alcohol.. then I say imagine that pain never going away and it being on an entire limb or limbs for that matter. With my husband recently when he got cut.. I dared him to pack the wound with sea salt not telling him why. He did it and then even more than before he understood as best he could just one of the symptoms I have on a daily basis. Sometimes it is easier to help them understand a little bit at a time.. and at least for me it has always worked out better when out of the blue I just ask them if they have ever experienced something like x,y & z or say can you imagine what it would feel like if _____ and then gently express that this is how you feel every waking moment. People don't understand and can't process "pain" as most people have only felt acute pain that subsides over time. So trying to get someone to fathom chronic sever pain is pointless .. they are not wired to understand. In the movie The Bucket List there was a great example of one of the side effects of chemo (and having been through that myself I know that it is true) as being like napalm is coursing through your veins. That is a great example as well of the type of pain but.. unlike with chemo it never goes away. Sure sometimes it might be slightly better but, then there are times when it is absolutely unbearable which is what most people don't quite get.

However, we are not alone in how people treat us or have a hard time understanding. My dear friend passed away a few years ago from the affects of MS. She was stoic throughout her battle and even though the affects of MS were visible people still neglected to ask her how she was feeling or offer very often to help her with things that were difficult and then later impossible for her to do on her own. They judged her husband who was an amazing example of the kind of love and care you would give a loved one suffering from a chronic incurable illness because, looking from the outside in everyone had there own opinion of ways in which he could do it better. Even talking behind her back at how she should "try harder" or walk instead of using the wheelchair.. it was horrible then but, now looking back it makes me ill to think about how unsympathetic people were along the way. Even I now wish I had done more.. went to visit more often than I did and took the time to ask her how she felt instead of ignoring the obvious. I try to think of that now.. why didn't I ask often? Well the simple truth is that I thought it was pointless to keep asking knowing what the answer was.. she wasn't going to get better and I knew this. So I guess maybe I was trying not to bring it up so as not to cause her any further pain. Ignoring the 'elephant' seemed better at the time - now, I wish I hadn't. People do also get wrapped up in there own lives and though that is painful sometimes I would much rather them do that, than to be in the same kind of misery and pain I(we) endure each day... even though that causes me emotional pain at times. I try harder now to live vicariously through others.. that means I've had to learn to listen more intently to others, help them ramble on about there day (some people get uncomfortable sharing all the great things they are doing when they know we can't). I try to show my enthusiasm for other peoples accomplishments and life adventures as much as possible so that they get excited to tell me all about it.. and that helps me feel a part of life. It also keeps them connected to me for when they get to a place that they want to understand what I'm going through.. there is a time for that, not just any day will work. Keeping in mind that friends and family also go through the denial, mourning loss etc., after our disease of CRPS begins to affect them. We go through it also.. and this loss is just as profound as the loss of life. That is where the 'timing' comes in. If you notice in the beginning that people really don't understand or change almost instantly - take a step back and ask yourself if they might be going through the emotional stages of loss... this is hard on everyone it touches and like CRPS spreads through the body it will spread through family and friends just the same.

Rambled enough.. sorry.

Before we try to get people to understand CRPS.. ask yourself honestly how you handled the medical misfortune of someone you know. Did you do right by them? If you did, bravo.. you are one of a kind! If you didn't measure up after knowing what you know now.. what would you have done differently and how do you think others will find a way to do what you didn't? Is there someone you know right now suffering with MS, Lupus, Spinal injury or even cancer? Have you talked to them recently? Have you put your health issues aside and went to visit them? These are just thoughts that I have.. a way for me to keep things in perspective so please ignore them if it doesn't make a bit of sense to you. We are all walking a path in darkness.. but, we are not alone, we are strong and we will get through this!!

Vrae recently made a post with a link to a nursing CEU on CRPS.

I encouraged my 18 yo son to read it and "joked" that there would be a quiz after it. No, I wasn't going to ask him to take the nursing CEU quiz, I just meant there was a certain line in it that I KNEW he would comment on IF he actually read it. He is after me to quit smoking and is currently grounded for drinking my diet coke on me, so I expected him to immediately comment on the nursing recommendation that CRPS patients should be cautioned to avoid caffeine and nicotine. He kept telling me that he had read it, but didn't comment on the caffeine/nicotine so I KNEW that he hadn't read it.

Az,
Every time I read that letter I think the same thing.......that's what I want my family and friends to read and UNDERSTAND. If they half ***** read it, or read it and don't "get" it, I'm not ahead of the game. If they think it's a ploy for sympathy, I'm worse off. Oh, but if they actually "got" it ! That would be great ! I emailed it to my sister, my husband, and my parents a few years ago, but no one even commented on it, so I don't think they "got" it.

It's worth a shot.

finz I actually had a specialist who came to my home(he recognised it was too painful and dangerous to go to him) read me the riot act for trying to cut down on the amount I smoked said that the extra stress fr people like us could be enough to push me over the edge.

Oh yeah, boy you hit a nerve with that!!
I have indeed asked myself that question, the answer is many times I had failed miserably. Not from lack of compassion or love though.
With those closest to me I realize it was DENIAL on my part, with others I
imagine I was just CLUELESS on what to say. However, I did try to
educate myself on what the disease or condition was about.
For that reason, for my loved ones, I do try to cut them some slack.
Of course, now that it's me I get it big time!! I really wish I could go back & get a "do over".
Too bad this the way I get "educated".

Seriously, knowing what I know now I really wish I had a "do over".

Part of the reason I shared this was because of a recent enlightenment of a friends condition. I've known this woman for over 20 years (she is my husbands Boss's wife) and over the last say 5 we have grown much closer. I've always known she has a severe case of psoriasis as she goes to great lengths to disguise is affect on her skin. She also suffers a great deal when the weather is about to change and during a conversation we were having lately she casually mentioned how her legs and arms felt as if the flesh was exposed. Mind you, she didn't know that I also experienced that type of pain and when she said it, tears welled up in my eyes because though I understood psoriasis I didn't realize (nor had I ever asked) that she also suffered from psoriatic arthritis which is a very painful inflammatory disease of the joints/fingers/toes. I felt horrible that I had never asked. It wasn't because I didn't care or didn't have compassion I just didn't have the knowledge or experience with that condition to know much more about it than the obvious affects it has on the skin. Over the years I've picked up countless creams for her to try.. out of love and concern.. thankfully she always accepted the gesture with a smile even though she knew I didn't fully understand what she was going through. In hindsight - I could have been a much better friend, offered much more support when I was healthy and just plain taken the time to talk to her more about what she was dealing with on a daily basis.. yes, I whacked myself on the head more than once about this.. I felt terrible. She reached out to me, took the time to research all I was going through so much so that she sent articles to me about potential treatments, took me to doctors appointments etc., I love her. But.. the reason she took such an interest in part, was because she has intimate knowledge of what a life long chronic condition can do to a person. Friends and family who haven't experienced something similar don't really have the ability to understand even if they tried much of the info available would seem like gibberish. After a deep conversation with my friend we got to talking about CRPS and this particular topic.. she mentioned that it wouldn't surprise her that if someone who skimmed through the info available on the internet that they would easily come to the conclusion that it is a psychological illness, and I agree. Personally, I would rather friends/family remain ignorant about it, than skim through something and only to come to the conclusion that this is "all in our heads" which is implied throughout the internet.

Most of us will lose some friends but, we will also find new ones. The truth is, that on top of all our pain, we now have to work harder at every single relationship in order to keep it alive (and most won't stand the test).

Try not to let anger/bitterness settle in your heart and mind as this will only do you harm. Most people don't intentionally want to cause any of us harm or hurt feelings.

This lesson the hard way.. oh gosh do I wish I didn't have to learn it this way either. But.. now I can do a better job each and everyday!

zookster you shouldn't beat yourself up you did everything you could with the level of knowledge you had at the time and a lot more than the majority would. Part of the problems is us we all try to hide just how bad this is so people can't really help because they don't really know. If she had told you earlier I'm sure you would have done even more

Thanks Kevscar. I know I did what I could but, I could have taken the time to ask as she is no different than us in that she hid her affliction so not to burden others with what they couldn't really do anything for. Just like my other dear friend with MS.. she never complained, she did amazing things even though her limbs were full of atrophy and dystonia and there wasn't a time I remember her worrying about people who didn't understand (and trust me there were many who didn't and even more who judged). When I did ask directly about MS she would share but, never once did I hear her say anything about it without someone asking.. we all just lived like it wasn't there. I believe with my whole heart that, this is the reason she lived a very happy life despite the pain and challenges. Only after her passing and my diagnosis of CRPS did I learn that she also suffered from CRPS which is very common among those with MS. However, even if I had known then.. I don't know if my knowing would have helped or hurt. I know I hate it when people treat me differently now, as it only makes me think about it and it creates and invisible spin on everything. I don't need someone to pick things up so I don't trip, or make/change plans around my limitations - I can and will work around the CRPS myself, I will look when I'm walking so I don't trip (and if I do I will get back up), I will get the dishes/laundry done a few minutes at a time... the more others do for me, the more dependent I will become and that won't help me in the long run, at least that is what I learned from being blessed by her friendship and beautiful life! I am grateful to have witnessed her triumph over such a debilitating and deadly disease, and even more so now that I can look to her for encouragement when life seems impossible. Her legacy is alive!!

Even with my husband I don't share all about what is going on with me. He is an amazing support and understands more than most because it is his best friends Mom who had MS and he has basically been a sibling in this family all his life. But - as much as this is overwhelming for us, even the most caring people will have a hard time fathoming and dealing with how this affects them if to much is given at once. It seems that in my network of support different people have different roles. My best friend will understand the physical pain much better, so she is the ear for that. My husband clearly see's the emotional and mental impairment so he is my rock in helping me deal with that.. I hide my physical pain from him more because I don't want him to worry about every time he touches me (he still does but I try not to add fuel to his concern) and eventually stop.. I need that touch even if it causes pain or the lack physical contact and intimacy will slowly kill me. The friend that who understand the physical pain couldn't handle my emotional/mental struggles on top of what her own life throws at her, and I understand that. One of my other friends does therapy with me one day a week and keeps me accountable on other days.. that is SO helpful!! Spreading out who you can lean on through different aspects of this disease seems to make it much easier on everyone.. no one gets burdened and I when I'm feeling down I know that one person can usually handle one part of this better than the whole boat so to speak. In turn, when that friend is hurting and need me.. they are more willing to lean back without worry that I already have to much on my plate.. that is important because we still have so much to give!!

Rambling again.. sorry. I really hope something of what is written will help someone somewhere along this journey. It is painful for everyone but there is hope if we are tolerant and creative we can help our friends/family/co-workers adjust to it as well. A few tears along the way and hurt feelings are bound to happen unfortunately.

We don't ask because we don't want to intrude or invade, thank alien life form nobody's asked if I,m a raving brainless Zombie with aims of world domination. We wait until the person trusts us enough to tell us.