…But not with a song. Instead it’s Empathy! The last few weeks I’ve pulled away from most activities online especially Facebook. I’ve always liked my little corner of the world, I like being the little duck in the big pond, away from the hustle and bustle of it all. I’ve always enjoyed raising awareness and helping others the best that I can a midst my own pain and hardships. I have a hard time feeling what other’s feel and it really doesn’t matter where or who it comes from. The emotion is still there. The worse of it is when people argue, or lash out at one another for what ever the reason might be at the time. Anyone, Or all the big and little one ups. I am not speaking of any specific person or group. It still plays heavy on me. I want to be friends with everyone. This does not mean I want to talk in private messages or share secrets. I do not. I want to be a part of a support network and get along with everyone. You won’t find me a part of tight circles or tight groups, I’m not into that. I prefer open sharing, caring, support and providing helpful information that can assist someone or everyone. Private messages are on point. Rarely do I share personal information in private or get friendly with someone. Not because I don’t care but because I do. Everyone should be happy for what each other is doing positively. If you knew me at all you would know that the community and life I come from has a specific standard of respect and decency, a moral compass, a morality that if people spoke to each other the way they do on Facebook they would be told to leave immediately if in person and if online booted right out the cyber doorway. Yes, really! And I am not speaking of religion in any way even though my spirituality runs deep. Some people think I know things or gossip about other people I know nothing of, I really don’t, nor do I care to know. Why would I want to cry over anyone’s drama? Empathy! I can say this much in all the time I’ve been on Facebook which has been a few years I haven’t exchanged more than a few dozen separate IM’s. Nope! There’s not many out there that can say that I have. I’ve spoken to, actually spoken to about a dozen people to the point of a conversation and a few more single answers to a question posed. I don’t even know why I’m defending this I suppose assumptions can hurt a bit too. I am truly not use to such chaos. Not being use to it does not make me better than anyone. I am not! But it does make me different from many. I really do look forward to meeting more people offline, being apart of local events, activities, and advocating for patients. I have been meditating on much lately. There is so much to life and attempting to live it. So much just breaks my heart. I’ve always had the ability to empathize above sympathy, most can only sympathize. Having too much empathy hurts. There’s no way to shut it off and it really does kill me softly. I will be focusing on the most important which may not be important at all to someone else. I know my path has been written I just have to decide which way down it to go.
Pain
CRPS/RSD and Suicide
Over the years we have heard that suicides for CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) patients is the highest of all suicide rates.
This may not be as necessarily true as it seemed. This also does not entirely mean it’s false.
The following is an excerpt by the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) –
Suicide and Complex Regional Pain Syndrome (CRPS)
On June 23, 2012, Jill Harkany-Friedman, PhD, spoke to the RSDSA Board of Directors and invited guests on the topic of CRPS and Suicide Prevention. Dr. Harkany-Friedman is the Senior Director of Research and Prevention for the American Foundation for Suicide Prevention (AFSP). RSDSA asked Dr. Harkany-Friedman to speak because of recent suicides in the CRPS community. She assured us that although most individuals have fleeting thoughts of ending one’s life, suicide is relatively rare (12 out of 100,000). Furthermore, 90% of those who die by suicide have a diagnosable mental disorder, i.e. depression, anxiety, alcohol or substance abuse, and a potentially treatable mental disorder. We are posting her PowerPoint® presentation for your information.
I respectfully give all credit to the RSDSA for the above information.
While I respect the educated view of Dr. Harkany-Friedman the thought presents itself that she seems to be stating that nearly all those CRPS related suicides indeed had and underlying mental disorder therefore was the reason they took their own lives. I am not certain though. The estimates were on an over all amount of suicide percentages rather than CRPS specific.
I do apologize in advance for any misunderstandings.
I have rarely ever used offensive language in my posts, but in order for the general masses to understand what I mean in a blunt manner, I will come right out and say it, “Chronic severe pain is a mind and head fuck”. It becomes mental. We all know, at least most of us do, in order for us to feel pain, our brain has to feel it first.
That’s why coping strategies, meditation, relaxation, bio feedback, breathing exercises, guided imagery, aroma therapy and so many other techniques are necessary tools for the management of pain.
I have a hard time believing each of the CRPS suicides also had a mental disorder. Of course we’re mental. That doesn’t mean we have a mental disease, also.
It’s not all in our heads it’s in our bodies!
This also bring up another thought and that is if those suicides were CRPS misdiagnosis’. I hate to bring this up but there are some people who desire to be sick, who seek attention, who thrive on pity, who watch and listen to others for their symptoms so they can take what they learn to their own doctors and claim the same illness. Those people would have mental disorders.
In these cases I would hope the doctor’s were watching the objective findings rather than only listening to the subjective.
A little example,
30 people on a plane
Someone starts coughing and gagging suddenly, itching themselves all over. Making a scene for all to notice.
The person gets out of his seat and stumbles into another passengers and coughs all over him.
That person begins to worry he is catching something. He starts to itch himself.
Suddenly others are doing the same.
Next thing you know every one is hacking, coughing, itching and going nuts.
They all think they’ve contracted some illness, epidemic..
The problem is no one has it’s all in their heads. They only believe it to be true.
The first person never had anything at all. It was just a test.
This only goes to show the power of suggestion.
For some reason I tend to think that if deaths were related to CRPS/RSD we wouldn’t know that it was. Somehow some way it would be found and reported that that there was a psychiatric condition present or un diagnosed and that was the reason behind the suicide. Since nearly all CRPS/RSD patients have been diagnosed with depression secondary their illness, I have a feeling the depression would be used as the cause and not the horrible pain itself.
Suicidal ideations would be almost natural for anyone going through a painful hardship. The mind tries to free itself from ongoing pain and turmoil. It may plan and think of ways out, do things it wouldn’t normally do when more at ease, may even harm, cause bodily injury and so much more.
Self harming, cutting and causing bodily injury isn’t always a sign of suicide or suicidal ideations, sometimes it’s just a diversion to the original pain one is constantly feeling.
I think most CRPS/RSD’rs who have suicidal thoughts don’t really want to die at all, on the contrary they want to live.
They just need help managing their pain and most of them aren’t getting it.
~Twinkle Wood-VanFleet
I don’t look sick, sound sick or act sick does that mean I’m in remission?
The question was asked this week in my Support Group-
What do you consider “remission“? 100% back to normal or being able to manage your pain around 2-3 (on the McGill pain scale)…Just curious.
The question was asked because a good friend of mine has a radio show and people are always asking her if she’s in remission because she sounds happy on the air. She often is. Her symptoms aren’t as nearly as bad as they once were but she continues to have issues all the same.
She’s not in remission but has found a way to cope. Namely it is her radio show that has given her back her life. The interviews, research, interaction and all that goes with it has given her purpose and reason to go on. The radio show is her medication. She is wrapped up in so much information that she learns by personally speaking to doctors, other health care personal, authors, herbalists, social workers, therapists and so many more that she is better able to cope with her pain at the time due to the Distraction!
It has nothing to do with remission.
Which begs the question— Just because we don’t look sick, sound sick or act sick does this mean we’re in remission? Answer? Not at all!
So many people have preconceived notions of what sick should be and often times those who make judgements however subtle are the same who become offended if another questioned them at all.
We shouldn’t have to put on a sad face, drag our leg, clench our fist, limp or show pain behaviors just for someone else to believe we’re in pain.
I am not sure h0w anyone could presume or assume one must be in remission if they are able to cope with their pain or because they do not show it.
The same could be said for me. To many it’s seems as though I am active. I have an online support group, I’m a chronic pain advocate, I’ve had an RSD/CRPS website since 2005, I’ve appeared on the radio show I mentioned above both as guest speaker and co host, I’m the California Ambassador for the Power of Pain Foundation, I represented the Power of Pain Foundation at the NAF (Neuropathy Action Foundation) with Barby Ingle earlier this year, I did the same at the Convoy of Hope in September, I worked as Leader for another Support Group for 3 years and so forth, I have this blog and I work hard to promote RSD/CRPS awareness, promote others and support their efforts to do the same.
All the while being in pain each and every day. Many days I cannot even get up. So many days and hours a week wasted because I can’t pull myself out of bed or wake enough to be coherent.
People don’t see this.
Offline I’m barely out in the public. My most often trips are to pain management once a month or to other doctor appointments. Some people assume because I have these titles or because I try so hard I’m better off than they are. Or that my pain isn’t half as bad. If only they knew!
Sadly, pain seems to be a competition. You must be better of than me, or I hurt more than you. If you can do that you must not be in that much pain, you’re smiling today, you must not hurt, you went on a trip? You must be in remission!
I went to the lake this summer with my husband, daughter, grandson, and close family friends whom I call daughters, would this mean I must not hurt or that I must be in remission?
Naww, all it meant was that I was invited and wanted to spend a day with my family. No one saw that I spent the day laying on a blanket. I couldn’t even enjoy the water because it was too cold and my legs wouldn’t carry me back and forth to test it out again.
Another good friend of mine, best selling author, executive director, who travels several times a year advocating, spreading awareness, speaking on behalf of RSD/CRPS also has received negative comments. And while she has been in remission due to in patient Ketamine treatments, what many don’t know is that during these trips and appearances (yes I do mean “during”) or immediately after, she has to check herself into the hospital for a Ketamine booster in order to go on.
No one likes to be judged or ridiculed..
But remember…
Remission is Possible – (-Barby Ingle, Remission Possible)
RSD itself is forever.
—–
RSD Advisory- Where Chronic Pain & Depression Collide 