Chronic Pain
Welcome to Spine-health’s Chronic Pain patient community. You can also read doctor approved Chronic Pain Articles and watch Chronic Pain Videos.
- Most Popular Chronic Pain Articles
- Types of Back Pain: Acute Pain, Chronic Pain, and Neuropathic Pain
- Chronic Pain Coping Techniques - Pain Management
- Most Popular Chronic Pain Videos
- Acute Back Pain vs. Chronic Back Pain Video
- Myofascial Pain Syndrome Video
October 1, 2008 - 11:03pm
Letter to Normals from a Person with Chronic Pain
This was quite popular on the old website, and I see someone requested it, so thought I'd reprint it again.
This is an adaptation of a piece written by Bek Oberin.
A Letter to Normals from a Person With Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
_____________
Any information I provide is through personal experience ONLY....I am not a medical professional, though I could write a book on the impacts of chronic pain and the treatments I've tried!
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. ~E.M. Forster, Novelist
October 3, 2008 - 10:44am
#8
Copy & Paste
Copy & Paste
October 5, 2008 - 1:36pm
#9
awesome
That was SO good and captured how I feel practically to a T. I would imagine how alot of us feel.
I know my family does not mean to be "toxic" sometimes with their words but sometimes it happens. Often someone in my extended family will ask "how are you today, how is your back/legs". Its not that I don't know its just that I dont want to sum it up each and everyday for them. I don't know if that makes any sense whatsoever.
I have tried a new medication called Pamelor, it is helping. I am not sure how much it actually helps the chronic pain but it has been wonderful for the bit of depression I will find myself in. Chronic pain stinks.
Thanks for letting me share.
Lori
November 8, 2008 - 10:46am
#10
davidkarle
I always felt this letter sounded kind of "whiny", but I guess my point is that it really does lay it on the line and very bluntly! 
I think there are people who will really make an effort to try and understand what we go through, but there are others who will ALWAYS doubt because they haven't walked in our shoes (as you said, lucky for them!!).
I found a great way to share this info in another way, and that was by doing a presentation to a class of 2nd year nursing students....it really brought to light what living with chronic pain is like. I posted it under "Good News" and it's called "my debut as a chronic pain spokesperson". It felt SO good to be able to educate the up and coming nurses, even if I only affected 20 or 25 of them; with any luck, they will share their knowledge and carry on the tradition of treating "us" with respect and dignity.
Thanks for your input, everyone; I can't take credit for it, as I said, but it's an interesting thing to share!!
Tracy
_____________
Any information I provide is through personal experience ONLY....I am not a medical professional, though I could write a book on the impacts of chronic pain and the treatments I've tried!
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. ~E.M. Forster, Novelist
January 22, 2010 - 8:48pm
#11
the "normals" in my life are in denial
Another member who was in gourmet to support her son pointed me in the direction of this post. I have not been so grateful for something I read since my surgery failed and discovering say lidocaine patches made a huge improvement in my ability to even consider hanging on.
It boggles my mind that after a variety of rehab doctors, surgeons, pain docs, and my good old MD have all pointed out how my neo looks Luke disc is still herniated but it is actually scar tissue that they more frequently verbally abuse me saying I don't exercise, eat right even while I starve myself to avoid more weight gain since that would mean worse pain. My sister recently accused me of being a drug addict, as my mom has also done. My family including me all have tendencies for addiction. Yet I do not drink and have been on same dose. For over two years. I even got and opinion about my dose which is 30mg twice a. Day of morphine sulfate ie time release and three breakthrough percocet daily. If I abused my meds, how could I get up and work without withdrawel
?
Facts are. I know I need meds to survive and am appalled loved ones would believe I spent 3 years crying, er visits, epidurals, facet shots, ablation, steroids, a ton of non narcotic meds like anti convulsants and anti psychotics for pills. I lost. Life savings, top salary ever, moved in with mom, seen excellent therapist who teaches at Penn, no dating - zero guys right at age I'm supposed to be married 5 years ago, forget sex since I have l5s1 and can't take a cat on my lap.
My family lives well, very well. My sister never visited me not even while in psych ward from SI thoughts after steroids side effects. She never called once after painful procedures and constantly complains about her looks or a bad date joking we should both give up, meanwhile I had about 4 good months with no depression as I focus on building my.firm being SO SO grateful I found a way to earn again after 3 years asking for free toilet paper.
But even af5er 3 years no one treats me like the handicapped person I am, in fact they ignore me when I'm in acute pain and should have someone to comfort me. They criticize my weight and I'm only about 30lbs over, they reprimand me when I get flare UPS saying I overdid it when they have NO idea it could have been from shampooing my hair, I never know what little thing could. setvitboff.
They don't know that things like proper hygiene lime cleaning oneself on the loo is so painful I drink as little as possible. Or that when I dream I'm painfree, and so waking to my sickly body that's suffers for first 1-2 hours EACH AND EVERY MORNING OF MY LIFE I MUST FORCE MYSELF TO TRY, BECAUSE THERE ARE MOMENTS I ENJOY LIFE STILL.
I too hate being asked by friwnds and pretend life is a play and I'm not hurt, it seems to work to get me to forget pain if u will while living with it.
How can I try to combat their judgements about how messy I am, that I wear ugly shoes cause. I can't bear others, have them take me seriously when I do mention my pain, get them to respect that I am not lazy..I am doing all I can. They have damaged my se/f esteem and made me guilt ridden over paying for my meds while driving new BMW?
All I want is some attempt to have empathy, to offer minimal care when I'm bedridden, and maybe even a kind word that I'm working twice as hard to do my job putting in weekends to catch up when I needed breaks during work hours.
I must mention my circle of friends... that if not for them i could not be where I am today, I thank god daily for them. But somehow your mom, dad, and sister seem to tear me down even though they love me.
Sorry for huge rant, but I've been down. Since learning RFA annually is my only option for relief. Thank goodness I found this site...every night I find understanding support from smartphone in bed. Wishing u all well. Colby
_____________
L5S1 ruptured disc by chiropractor
Discectomy - resulted in severe scar tissue
Cymbalta, morphine sulfate 40mg 2xs a day, 3 percocet
Had all injections for 3 yrs. Had RFA but fell so not sure
If it worked... told I need it once a year as only option
Finally working after 2 years of horrible suffering...
July 7, 2010 - 11:58am
#12
Don't be sorry
You sound like me last week. I have come to realize that many people go thru these same situations and deal with the same type of people. It does seem to be family and close friends that treat you the worst. I don't understand that. My heart goes out to you, I know it hurts and it makes you feel like giving up, when you have already given up so much. I know there have been times that I have thought about ending it all, but then there are those good times that I still do enjoy. It is just rough, and people can hurt. Take care and do what is best for you. Try to surround yourself with good people, not self absorbed jerks.
January 22, 2010 - 9:10pm
#13
Colby
I just read your post..
It sounds like you want help, but I am not sure. You've talked about some problems, but I am not sure how and if they get resolved.
We try to do what we can to help others here. Perhaps, its just allowing you to say whats on your mind and for us to listen.
Normally, I read about specific conditions, MRI reports, potential surgeries,etc. but thats not what I got from your post.
I hope we can help you.
_____________
Ron DiLauro
Ron's Story
Suicide Hotline
Alcohol and Drug Abuse
Arthritis
_________________________________________
rdilauro@gmail.com
SH Administrators = dilauro or tamtam
SH Moderator Team =
haglandc , Numbskull , Liz, or Neck of Steel Cindy
"In his eyes we're all the same Someday we'll all have perfect wings, Don't laugh at me."
"That there's none so blind as those who will not see."
The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
This can vary from person to person, so do not take comments as medical facts or rules
January 23, 2010 - 2:49pm
#14
i would like help thank you
Ron, I know my rant was all over the place. What I am really struggling with currently is my family treating me badly and not offering enough support when I am in acute pain. My sister in particular has nothing to do with me and we used to be close. When I as for. A ride after getting injections they seem like they think it is low priority but I only resort to shots when I can no longer function. I've been very brave and done all I can for myself. I've been in therapt the whole three years and its been a lifesaver literally. But I would be so much better off if when I need someone I could count on my dad or sister or mom. It's all been too much. for them I guess, but my shrink said they are pretty awful and he is someone whos seen it all. I think I must be in the highest
est level of pain someone can be in and still work somtimes. I only say that because I would expect to hear more people sound desperate like me...I'm embarrassed but can't keep it in or ill explode.
Most famlies are probably supportive but I wonder if there are others like me who have been able to get accross how dire my situation is. There are many times I wonder why I work so hard just to survive, unable to see friends or much.of anything other then my job which is the one great thing I have going.
Being called an addict by my sister and mom ( she said our of anger and knows I need meds to work or just stand being in my b9dy) makes me angry as heck! I was so depressed for two years that now I'm confident I'm handicapped not crazy
_____________
L5S1 ruptured disc by chiropractor
Discectomy - resulted in severe scar tissue
Cymbalta, morphine sulfate 40mg 2xs a day, 3 percocet
Had all injections for 3 yrs. Had RFA but fell so not sure
If it worked... told I need it once a year as only option
Finally working after 2 years of horrible suffering...
July 10, 2011 - 3:54pm
#15
Being called an addict by family
colbyJ, I am on here looking to see if anyone else has experienced being tossed away by their families and called a drug addict. I am sorry to see that you have, but at least I know now that I am not alone. A year and a half ago I flew to my mom's birthday party 5 weeks after having C2 thru C7 operated on. It was my 4th major spinal surgery. I didn't know that my daughters had previously told my large (over 70 people in that region alone) family that I was a drug addict and they were to ignore me. I was basically beat up by my brother and a brother in law when they tried pulling me out of bed while sleeping. They then yanked me from the floor and held me in a police hold to take me to a car instead of letting me use my walker. I was taken to a now ex friend's house who had been instructed to get me on a plane back home the next day. A lot of other things were done to me, but too many to mention now. At this point my mom and dad speak to me, a couple of cousins and a couple of nieces. One of my 2 daughters does also, but mainly to ask if I am off of all my pain meds now. It is ironic that both of them are on the same drugs I am for their back pain. My back is so much more damaged than theirs is If it weren't for my friends and praying, I would be all the way crazy. I am going to have a trial SCS implanted 10 days from now. I hate lying, but am about ready to tell my family if the SCS works that I no longer need to take meds.
I have never had a drop of alcohol in my life, never smoked anything, never taken an illegal drug, but have been on pain meds since my 6th car accident 8 years ago. I have tried so hard to please my family, but nothing I have done makes any difference. They have access to my doctors, all my records, etc. but they choose to judge me instead of becoming educated. I am 60 years old; not a youngster wanting to be high. I take the minimum I can to be able to lie in bed. Doing anything else makes my pain go past the point of the pills I am on helping much. I was always very active before this.
Why do the people that are supposed to love us the most treat us the worst? I am debating about emailing the letter on here out to them, but I highly doubt it would make any difference.
Thank you to all the people on here; it really does help to know that there are others that do understand what you are going through.
Jan
_____________
Jan
July 10, 2011 - 8:37pm
#16
Wow...You have endured...
..so much..physically, emotionally, mentally..yikes.
In my experience, you are so right about hurt and disappoint from other people judging...esp family.
Most of my family do not understand and I think grew weary of even just my more weakened, exhausted presence. The resulting heartache can be overwhelming at times.
I did give the letter..changed up a little to match my style..and the friends already supporting me said it helped them understand a little better. But the others I was trying to reach in a new way..didn't even acknowledge that they rec'd the letter.
re' your SCS implant..definately your right to share or not share info with whomever you want. I have a list of all my conditions and meds.. POA for health care..not my family 
...all info on me when out of house in case something happens and I can't speak for myself.
Hope the not understanding of others doesn't stop you from continueing to reach out and possibly other family or friends are there to fill the void.
It's tough..tough..tough out there..and can be lonely and isolating. Keep on keeping on. You are not alone.
Take care... 
_____________
My profile lists my spinal issues and other conditions that I navigate around daily.
Doing my best to be getting around and hanging on to this ride called life!
July 10, 2011 - 9:47pm
#17
I would tell those people
I would tell those people who can behave like that acusing spine patient a drug addict would they call a cancer patient a drug adict just the same? They probably would cause they are way too stupid to realise spinal injury is not something to joke and take lightly. They are just blind to the reality when life aint what they like to think it is and are nothing but narcisits cought up in there own litle buble.
You have to remember narcisists dont have the ability to put themself in another persons position and have the ability to feel for others while they are consumed by there own self. Believe it or not i actualy researched this to be able to understand it with my own family. Usualy dont mater what you do you will not be able to get them to understand so its not worth the time of day and the stress.
As long as you understand it is all that maters and come to piece with it and the sooner the beter. Best wishes
_____________
L4 L5 disc replacement in 2004=causing nerve damage'Flexicore disc. 2006 fusion same level leaving adr in. Fusion did nothing to releive the nerve pain.Pain clinic=every injection procedure avalable inc,razadamy, ablation, nerve stimulater trial,morphine pump trial all failed. Pain can be described as burning pain in lower spine penetrating in to left buttock,down left leg. Refuse to take lyrica or nuorontin do to its side effect,Leaving me with norco,valume,and flexiril at night.Which these medications only help with the muscle aches and stiffnes does nothing for the nerve pain from the nerve damage sustained from the adr surgery.Coming up nov.19th 2009 Lami, and hardware removal from fusion,for hardware just causing more pain in other areas.Hardware block comfirmed hardware is also causing pain in diferent area aside from the severe nerve pain on left side.Emg showed some posible problem above surgery are at L3 L4.
July 10, 2011 - 10:16pm
#18
Thanks Savage and alexhurting
I really appreciate that others do understand what I am going through. There are a few severe alcoholics and illegal drug users in the family, but they are accepted. I do realize that nothing I say or do now makes any difference. I have been very open, and that may be part of the problem. So now it is time for me to not try to convince toxic people that I am doing the best I can. I am lucky to have the few family members and my great friends to help me. Plus all of you on here! I am keeping my faith and hope up that the SCS will work; and if not, something else may.
Thanks again to all of you.
Jan
_____________
Jan
January 23, 2010 - 4:20am
#19
Ongoing......
Tracy,
For the most part we engender normal’s to understand our plight of which many are incapable of understanding. I know I have pain and do not have to live vicariously through them for any recognition; we make the assumption that they were normal in the fist place and some are incapable of understanding any of our needs even when we have told them.
We have to live within this society and making exclusions isolates us, the people who have helped me most were those who listened and were compassionate to my circumstance. None of them needed to have pain to grasp the overall difficulties; I am sure normals would have a letter to CP patients.
My son is physically disabled which is visible to all, and even with that knowledge as a disabled person he is stigmatised and viewed unequally, what chance do we have if our plight goes unseen for being treated as we would like. Those who have the inability of supporting us will not be any more eager having read our letter, all the words used in how we should be support are correct and each enclave has its own individual way in how they would prefer to be supported and even the words used.
Coby is correct in assuming that the problem is with them than us, the notion of disability itself carries some inferiority perception and we fall into that category primed and ready for uncompassionate treatment and pity. Our true friends have no need of this letter, they have adapted and listened.
We all know that those who would deny us that grace and recognition could not live as us for any period, my heart knows I am above such hierarchy, those assumptions about my capability are wrong, measured from misconception and the need for others to feel superior.
In being assertive we only reiterate our daily struggle within that is something we are trying to hide in the first place, I have no problem is wanting to be treated equally and long may it improve, are we not in denial that everyone will not get it and in trying to chase that objective we too contribution to our own demise. Perhaps the hurt is in those who are close to us do not help that we surmise should understand more, I have no expectation of the passing stranger, even some partners do not fully understand, it is not easy.
For me disability has only improved the words used, practical every day living and who I am perceived as in some way inferior, would those who tread us disrespectfully do so if they had someone in the family unit of equal need, it does make you think.
We have to start somewhere and I do applaud any attempt to make the circumstance of those living this existence understood more favourably.
Take care John…
_____________
DDD.1990 Laminectomy, Failed spine fusion, hartshill rectangle RLS. 3 stents
Pain is inevitable, misery is optional. Sternbach et al
Pain is a more terrible lord of mankind than even death itself.
Albert Schweitzer 1953.
“It’s not things that trouble us but the views we take of them” Epitectus
January 25, 2010 - 11:02am
#20
Colby
Happy to hear you found this post and also found it helpful.
I'm not sure printing it out and giving it to your family would help as they don't seem to be very empathetic people to begin with, but it is worth a try. If they could spend one hour in your shoes they would understand!! I can't imagine living near my son and not helping him get around or to appointments or with anything else he needs.
I just wish I lived closer to my son. He didn't start having spine problems until after I moved to England. Sometimes we spend 2-3 hours on the phone filling our forms that he has a hard time concentrating on due to meds. I do anything to help him if I can!
Your friends sound like wonderful people and you are so lucky to have a job you love.
Thinking of you and hoping that your family will one day understand you better and accept you as you are.
Peggy x
_____________
Here to help my son and beautiful grandsons and learn as much as I can about the spine.
Surgery July 2nd 2010 for Grade 2 Spondylolisthesis - ALIF with a plate, cage & BMP.
Pain free so far!!
January 25, 2010 - 12:14pm
#21
Colby
Dealing with chronic pain takes it tool not only on the patient but the families also.
Sometimes its a matter that the family is tired of hearing about the pain, the doctors, the injections, the medications. So they appear cold and distant
And there are other times when they are totally supportive.
And of course there are times when they are just angry for you the patient.
Much of that comes from a lack of understanding. Most people can understand acute pain. After all, almost all of us have had that one time or another. Its easy to describe what it feels like when we step on a nail. And its easy for others to understand what we are feeling.
But with chronic pain, its much more difficult. Its almost as you have had to live it (chronic pain) before you can understand it.
Trust me there are plenty of members that deal with high levels of pain every day and still go on. Why, because there arent many other choices. We have to live with what has happened. So, dont think that because you have not heard that much from other members that your pain is any higher , nor are you as desperate.
People who live in chronic pain for a long time find ways to not let it consume their day to day life. It isnt easy, but its necessary.
We can't help with the family situation, and the best we can do is to tell you to never give up, and always try to keep the most positive outlook on your condition.
_____________
Ron DiLauro
Ron's Story
Suicide Hotline
Alcohol and Drug Abuse
Arthritis
_________________________________________
rdilauro@gmail.com
SH Administrators = dilauro or tamtam
SH Moderator Team =
haglandc , Numbskull , Liz, or Neck of Steel Cindy
"In his eyes we're all the same Someday we'll all have perfect wings, Don't laugh at me."
"That there's none so blind as those who will not see."
The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
This can vary from person to person, so do not take comments as medical facts or rules
October 9, 2010 - 2:30pm
#22
families and support
Agreed, Ron.
I continue to go through the family and friends issue regarding my situation and somedays it is good, others bad. I am thankful for them, however, and they have always been at my side but somedays, they forget or they even deny that I have any problems; they actually go through one of the "recovery Stages" for me in that they deny it exists.
All the surgeries, all the pills, all the shots, all the tests.... it is exhausting and demoralizing but we must persevere or we will die.... I choose to persevere even if sometimes it is the hardest choice to make and I can only put minimal effort into it at a given time.
I have decided in the last year or so to not offer any information about how I feel or what I am thinking to my family (outside my wife). I figure, if I look or sound really horrible on a given day and they ask me, they really are concerned and want to talk with me, and at that point, I do.
We are here to tell our stories and and release emotional / physical stress; mostly, we are here to listen and offer advice based on our own experiences, good or bad. The majority of us are not here to criticize, ridicule, or judge; that is just counter-productive and quite frankly, mean.
I truly hope we can be a support mechanism for you. Hang on, stay strong, and live for you... see you on the boards.
sean
_____________
Disabled Veteran with multiple fusions, treatments, and drugs.
July 5, 2010 - 2:46pm
#23
To me, the true benefit of
To me, the true benefit of this letter is in My reading it... what I know and what I accept (from myself) are 2 different things. Reading this letter reminds me that I'm not superwoman... not that I ever was, but I sure lived like it for awhile. I would walk through the pain (and suffer in silence later by myself).
Reading the letter reminds me that I'm not superhuman, that I DO have issues that I need to deal with... and other people can't possibly know unless they've been there. I can't ever expect someone else to know what it's like to cry in the car because they had to wait longer than expected on line. Or because someone stopped short in front of me while walking... or they dropped my card and looked at me to pick it up... or any of the hundreds of things that can and do go wrong while I am attempting to live "normal" or at least, my version of it.
My family is willing to help... they are often willing to do anything they can to help me...as long as I ask...I just hate to ask. I don't like to explain how I feel, hell, I don't even want to think about it myself, never mind discuss it with someone else. I don't WANT to give up going to the store... or driving myself... or being able to work. And yet... there are days when I can do none of that and need help.
So, this letter has made me see that no one can "see" what is wrong with me. They can't live a day in my shoes, and even on my worst days I wouldnt wish that on them... in my own weakness, I've found strength.. they couldn't handle it, couldn't deal with my life... and so, I'm stronger than what is wrong with me.
We're born into a culture where fixing the broken stuff is not only accepted, but expected. People fix their noses, their bodies, their butts their lives... then they see us..... and there is no fix. That can make loved ones feel inadequate... which can bring on frustration... for which the only outlet is... the cause of feeling that way.... as much as we need understanding, they need it too.
For me, I keep hoping that science will catch up with my back before it's too late to "enjoy" it. I'm not willing to "try" the current fixes... I don't want to... I'm afraid to. The fear of it being worse after stops me from trying... which is probably not a good thing.. but it's me. I've had major big surgeries for other things... so it isn't that. (shrug)
anyway, I think I've gone on long enough... I really just wanted to say thank you for the insight this letter provided.
July 15, 2010 - 6:55am
#24
Thanks
Thanks for posting this letter. I printed it out and gave it to my mother-in-law who just cant seem to wrap her head around my injury. She's so concerned about my pain meds and believes that because I had surgery I should be out running marathons!!
Thank's again!!
July 15, 2010 - 8:15am
#25
some people will never "get it"...
There are people that simply don't have empathy...they will never understand how another person feels.Realizing this is painful..We fight this realization,and it is an exhausting,futile fight.This battle adds to our pain.It is a waste of valuable energy.I made a written list of the people in my life,I put all the good things about each person on the list,then I put the things that have been not so good(concerning my pain issues). I found that each person was different.For example,my brother is always willing to drive me home after I have injections,but he is not available for daily things I need help with.My husband has a good job and is willing to work overtime to keep us going,however,he lacks empathy and minimizes my pain.so I don't talk to him about it.I have friends that always have a natural treatment suggestion(which can get annoying),but they also will just sit and listen to me talk.I don't tell my mom anything about my health,because I know she will criticize me no matter what,but I also know she understands my independant attitude because she is the same way.This works for me,I know what to expect from each person,this gives me the control.I control how each person can make me feel.I try very hard to not expect things that I know they can't deliver. It just makes my life easier.It's worth a try.
_____________
Taunya
Xdoodlebugger,Xminer
(Which explains the shape I'm in,but man did I have fun!)
July 15, 2010 - 9:00am
#26
sounds like the spoons theory
a very good letter .but the spoons thingy is a bit shorter and gets the point across just as good
tony
_____________
2010 just had a discography and now waiting for an ALIF open fusion {360 degree}
July 24, 2010 - 1:43pm
#27
"just that I dont want to
"just that I dont want to sum it up each and everyday for them" - thats so true. I know people mean well, but when they say "how is your back today" I find myself saying "oh fine" or "just the same" or whatever, because nobody (myself included)wants to hear " although I'm smiling and being pleasent, I slept 1 hour last night so I'm exhausted, dizzy, and can't remember anything more than 10 minutes, my back feels like someone's drilling into it, and I'm now so short tempered I may just kill you with this mouse mat by ramming it down your throat" - so instead, we say "OK" or "fine" and they take that to be true! It's a bit of a no win situation really. I don't think anyone *can* really empathise with your pain, and so many people whine when there is nothing wrong (there were so many fake bad backs where I used to work that you wouldn't believe it - but ruins it for us with real ones) that people with real pain are "just another one complaining".
I've been off work for a few months and am going back next week (though I'm no better, like most of us here I need the money) and am *dreading* the nice well meaning people I work with asking me if I'm OK 200 times in the first week..... even though I know they are being nice.
July 26, 2010 - 8:39am
#28
I think when talking to
I think when talking to normals you have to emphasize the "chronic" part. Everybody has pain, and at a certain age many people have some part of their body that hurts often. But you have to explain that it NEVER goes away.
Sometimes I explain it like a little kid that follows you around and whispers "pain" in your ear every 5 seconds. Could you get used to that? Could you sleep well? What about after 10 years?
I also learned to stop saying I injured my back, now I say I have a spinal injury, for some reason that works better.
_____________
In 1995 I fell from a height of about 10 feet and landed on my butt with my legs outstretched. Crushed T9 into a wedge shape plus undetermined injury to tailbone. Since then have added numb feet, a cyst,arthritis and bone spurs at T9, chronic pain, muscle spasms and nausea, scoliosis, and pins and needles. It hurts if I sit so I stand all day long.
July 26, 2010 - 9:19am
#29
t9crushed...
I love the analogy about the whispering kid. That is probably the most simplistic, yet most accurate description I've heard.
_____________
~He won't bring me to it unless He can get me through it~
2004-L5S1 discectomy/laminectomy-
2005-work injury-fall in elevator shaft-reinjured L5S1
2005-09-chronic pain, piriformis syndrome, neuropathy
2009-lg. rehernation L5S1/sequestered disc with migration to S1 nerve root
6/10-L5S1 PLIF/dural tear/CSF leak
September 14, 2010 - 8:09am
#30
Letter to Normals from a Person with Chronic Pain
About analogy i have to say it is logic, maths a form of reasoning in which a similarity between two or more things is inferred from a known similarity between them in other respects
Spam link not allowed. Removed by authority member, Cath111.
September 17, 2010 - 11:40am
#31
Chronic pain
I'm so glad that I found this site!
I have chronic, burning pain all over my body after being in an auto accident. I really am interested in talking to other people who also have this same condition.
My friends and family don't understand it because they don't have this condition. They mean well, and think if I move around more, it'll go away! On my bad days, they want me to still move around more because "no pain,no gain".
I am now being forced to look for employment with many work related restrictions when I'm struggling with being able to do even simple things such as shower or prepare a meal. Yes, w/c is unfortunately involved. I don't want to make this about that end of it though.
I am trying to be positive and looking into all of my options with my situation, but it is hard. It is much easier to talk with other people who have a clear sense of what people with chronic pain struggle with on a day to day basis.
September 19, 2010 - 10:59pm
#32
Thank you for sharing!
Someone in here had shared this with me before- not sure if it was Tam??? Thank you for sharing it with everyone !! I think it is very helpful.
Thanks again,
glo
October 8, 2010 - 6:05pm
#33
Chronic Pain
I feel like the letter's author some days. Like all of us, I have good days and bad days. A few years ago I had to go through marriage counseling because my wife couldn't understand that after standing at work 10 hours a day and driving an hour each way I would have to lay down when I got home. Thank god she can understand it a little better now, although she's not always happy about it. I guess I'm lucky because most of my friends and co-workers are sympathetic to my condition. I really do try to do as much as I can, but sometimes the pain is just too intense. It really stinks that I have become used to the pain and I can work through it. I just hope that someday I'll have disk replacement and I'll get some relief.
October 9, 2010 - 4:05pm
#34
i love this post i have read it before and copyed somewhere else
i love this post i have read it before and copyed somewhere else and posted it in my blog for some my family to read it
_____________
i live in chronic pain i have endometriososis,fibro and so many more things thats causeing my chronic pain PTSD,major depressive disorder and a other disorder that i can not spell it i use my heating pad for some my pain and i am open to other treatments for my pain
January 27, 2011 - 4:23pm
#35
Chronic Pain is an invisible pain- how do we create a good life?
Hi,
I have been suffering, struggling, surviving and recreating myself for the past 4 years of chronic pain. I have had a double spinal fusion and now an ANS neurostim device implant since May 2010. Prior to that I had a lamin/ disc. I am done with the surgery cr###p!
Way too many surgeries! And people don't see the struggle people with chronic back or related pain go through because usually we aren't in wheel chairs, missing a leg or arm... so they assume everything ok.
All my treatments ( western and alternative) have helped to some extent and still I realize that I am going to adjust my lifestyle to fit what my body can now do- which does not mean I intend to give up striving for more, and for less pain.
What it means for me, is that I am going to stop beating myself up for not being who I was.
Instead I am working hard to recreate myself in a positive way, because I will not give in to a "bad " or "less than life".
Candidly, while my family cares, they will never totally understand. How can they unless they have the experience which I would never wish on anyone.
My soon to be ex husband was never very supportive and when I refused to just suffer through the pain to suit him, the marriage was over.
I simply wouldn't struggle to do what was hurting me anymore. This chronic pain has helped me set boundaries that I never realized I had allowed to be breached. a
I had the ANS device put in because I could not deal with being zoned out on pain killers with the work that I do. I am now getting by with two advil or equivalent so I am feeling pretty good- but it is early days.
I am often exhausted with all the surgeries, and there are days when I really have to struggle to get out of "blues" and resentment of memory loss etc.
I had been a very strong "in my body" athletic, strong, sporty type person. I have to modify what I can do, and for how long I can do it.
So chronic pain seems to be one of my major challenges and learning edges- and I am so glad of the forum to be able to share with others. I can finally sit long enough to participate and hope to show up more often.
Thanks to everyone who shares here. No easy answers, but lots of support and caring.
Wendy
_____________
I am not a physician and am not giving medical advice- only my opinion. Please always consult with your doctor(s) before changing your current medical treatment, meds or treatment plan.
I have had multiple back surgeries and have suffered with neuropathic pain for about 5 years. I have a neurostimulator which helps.
Advocate for your own medical treatment, and don't hesitate to ask questions and get second opinions!
January 30, 2011 - 9:37pm
#36
What an excellent thread
The OP really expressed thoughts that I feel but hadn't put together, hadn't verbalized or compiled mentally. I'm as tired of discussing it as the people in my life are, of asking about it. I don't care anymore about comments like, "You just want the P-K's" and "You want some Midol with your painkiller?" (I'm a male). It's just the people I love, that I care what they think about me, anymore. The depression is just as bad as the pain.
It REALLY helps to just read, about people who go through the same things. I may not know any of you, but I appreciate the time you take, not just to vent and express your frustrations, but to let us lurkers know that there are others out there like ourselves.
January 31, 2011 - 4:09am
#37
I don't care who gets it,
I don't care who gets it, furthermore I don't want people to even have to think about it. It's enough for me that they know I'm having a bad day.. but only then if it's having an impact on them.
The people in my life understand me as much or as little as they want to and that is as it should be, to force any more would be an effort in futility. I used to want people to understand, but since I quit thinking that way and accepted my own understanding as enough I have been a lot more at peace.
To expect another person to understand is selfish in my opinion. If your neighbor had MS and you learned that he was upset or even mad because you didn't get it, how would that make you feel. I would feel indignant...lol. I don't think he should expect me to understand how he feels, but I am an empathetic soul and would certainly try. People are different.
January 31, 2011 - 9:42am
#38
Do You Really Feel That Way?
I asked my DH to read the letter & that was his response. He was surprised about a lot of it.
He is very supportive & loving & did not understand why telling me: "You just need an outing. I'll take you shopping." made me want to scream.
Actually, I hate it when anyone tells me what I "need" or "want". How about just asking me?
And anytime I'm up and around, he comments: "You must be feeling better!"
Ugh.
I'm glad he read it & has really thought about it.
January 31, 2011 - 5:29pm
#39
Well, I have my moments, and
Well, I have my moments, and even days, but basically I really do feel that way-(if you were asking me-lol).
I don't like it when people tell me what they think I need either, but I would feel that way even if I didn't have this disease(s) or the CP that goes with it.
My diseases don't define me, all of my emotions don't revolve around them, but I have had a very long time to adjust to this as a lifestyle and to be fair, this is now probably more normal to me now than my old previous "active" life. Now I look at the people in my life who were affected by my disability and I feel like it was me who did not understand them, their sacrifices and ways of life that totally changed because of me.
I'm one person who because I was disabled, people had to change, adapt, reschedule parts of, or in some cases years of their lives to accomadate me. It makes me very sad to look back and wonder what might have been. It is not my fault and I realize this, but this is simply how I view the situation as best I can from (their) side.
That is why I feel that people understand and care as much or as little as they want to and that that is as it should be. Feelings and people change and that's ok with me.
I don't know, I learned a long time ago that life isn't fair and accepted it as such. I'm not frustrated with people who don't understand CP because I know why they don't, and I would not want to burden a person with having to understand something that they had no interest in.
June 20, 2011 - 8:11pm
#40
.
.
_____________
• The only valid excuse you have to give up is if you are dead.
February 8, 2011 - 4:45pm
#41
As a 37 year old married man
As a 37 year old married man i basically experience reverse age and sex discrimination due to my debilitating condition. I get the "you need to man up!" and "you are too young to be having these problems you are always sick!". Truth be told i have been constantly sick! I had migraines, interstitial cystitis, crazy back pain, all related to my degenerative spine. It really ticks me off. Not much i can do though but it depresses me i feel like a wuss and a loser.
February 9, 2011 - 11:54am
#42
These postings so helpful
I have been enlightened to a new perspective... esp. from Robin and Papa Ron. Thank you.
The expectations I have of family is probably unreasonable.
Being active is a memory and so I grieve my old life. I know this has been difficult for most others...even family to understand.
I feel more optimistic in taking care of myself and hoping for the best.
This site, the sharing of others pain and experiences, has been so helpful. You guys have helped to fill the void and helps me to feel strengthened to keep on keeping on.
And feeling connected to life happening outside my door and to people who do understand... the benefit is huge! My thinking, my feelings... so much better!
Thank you guys!
_____________
My profile lists my spinal issues and other conditions that I navigate around daily.
Doing my best to be getting around and hanging on to this ride called life!
February 9, 2011 - 1:30pm
#43
Letter comment
Kudos to the person who penned this letter. I am a new member to this forum. Here is a quick synopsis of my story. I am 53 married 2 kids, 3 stepkids and worked as an Oncology RN until May of '10. I have suffered from severe congenital stenosis, a pars defect, spondylosis, etc since age 17. Three surgeries in the 1980's and did pretty well until 2005. May 2005 had sudden onset of numbness from breasts. MRI showed 3 collapsed discs and sever cord compression. Had 3 level fusion, C5,C6,C7. Fought hard to regain function and after several months returned to work part-time. This past May I developed severe (like 20 on 1-10 pain scale) pain all over my Torso. Many tests and MRI's finally it was discoverd a bone spur had grown and pushed disc at C4 into cord again. Back to OR in July for re-do and fusion to C4 level. Did not relieve the pain very well and now I have lost some hand functions and arm and leg weakness and have flaccid bladder. Plus still constant neuropathic pain, lumbar archnoiditis and neuritis. Still fighting to recive my long-term disability.
So, I have been real depressed and very lonely. I live ina rural area and no support groups available locally. Most of my friends still busy working and with HS kids. My husband retired to care for me and is now busy trying to convert garage to 1st floor ADA accessible MBR/bath.
I hope I can find encouragement and support from this forum. I have spent most of my career helping cancer support groups and am so frustratwed that so little is available to support chronic pain patients from neck and spine disease/surgery.
I could send that letter to almost everyone I know becasue they expect that I am going to get BETTER just b/c I did in 2005. I hope some of you will reply and we can support each other
_____________
With Grace,
Katherine
February 9, 2011 - 3:15pm
#44
Hi Katherine
I stumbled upon this site only about a week or two ago. I was so depressed...struggling with this chronic pain for years. In that short amount of time, my spirits have lightened. The info and feedback from others has been a huge benefit.
My circulation system all messed up...most recent event was stroke few weeks ago. My gut is a mess, right ribcage, right arm and leg...constant pain daily...to varying degrees. My back and cervical spine messed up also, but I don't have the words to explain.
My people don't get me...I don't get me. I just live it.
I'm sure my condition and feelings will be up and down..and it's nice to have a group of people that are willing to go along for that ride. It was nice to meet you! Take care!
_____________
My profile lists my spinal issues and other conditions that I navigate around daily.
Doing my best to be getting around and hanging on to this ride called life!
February 10, 2011 - 7:58pm
#45
I love it every time it is re posted
You see we all (chronic pain sufferers) are different. But it's as if we all live our lives in a parallel universe. Everyone of us can take something from that letter and relate to it. And I love these posts from all of you and all of the chronic pain people before you. Every time this letter gets re posted. And that's why many who aren't active in the forums anymore. Will stop by every now and then to check in on the chronic pain section. Maybe not to post but to read. And I don't think that happens in any of the other sections.
You see we are like a band of brothers and sisters that understand each other. And know that no one who has not walked a mile in our shoes has the ability to relate or truly understand. But God bless the ones who try!
Jim 
_____________
You get what you get, It has nothing to do with what you deserve!........I stole that from Susan
Click my user name to see my medical history
Today is yours to embrace, as tomorrow, Who knows what will be starring you in the face
April 3, 2011 - 11:31pm
#46
Colby J
Wow i guess everyone has a story and we are not alone in this strugle,Some of you are just too kind to the so called norms. I see it a litle diferent. Those who dont understand i consider to be self obsorbed selfish, self consumed pigs. I always had the ability to understand someones pain and never thought of myself 1st. I just assumed that how everyone was around me because there is no other way to be.
And boy was i blind. You would never think it would happen in your own family untill it comes down to it of geting worse after surgery and realising that the people you thought you would be able to count on are worthless. If they ever had a reason to think of someone else for a change other then themselves then this would be the time to step up to the plate.. I feel sorry for every one of you who found no suport from family and friends and have to deal with this kind of pain without them having the human compation to understand.
In my view who ever does not get it they never had it. And as someone else said here, its easier to say you have a spinal injury because if you say you have back pain, everyone and there brother and sister and there uncle will jump in how they had a back ache and they had to take something for it even for a week. As if our injury was even close.
If an animal is injured we rush it to the vet. If they cant help the dog then we take care of the dog either way. If a family member gets injured and cant be helped, is it not just as important even more so instead of siting there with there brain stuck in stupid?
Well thats my opinion.
Alex
_____________
L4 L5 disc replacement in 2004=causing nerve damage'Flexicore disc. 2006 fusion same level leaving adr in. Fusion did nothing to releive the nerve pain.Pain clinic=every injection procedure avalable inc,razadamy, ablation, nerve stimulater trial,morphine pump trial all failed. Pain can be described as burning pain in lower spine penetrating in to left buttock,down left leg. Refuse to take lyrica or nuorontin do to its side effect,Leaving me with norco,valume,and flexiril at night.Which these medications only help with the muscle aches and stiffnes does nothing for the nerve pain from the nerve damage sustained from the adr surgery.Coming up nov.19th 2009 Lami, and hardware removal from fusion,for hardware just causing more pain in other areas.Hardware block comfirmed hardware is also causing pain in diferent area aside from the severe nerve pain on left side.Emg showed some posible problem above surgery are at L3 L4.
April 4, 2011 - 4:21am
#47
Your comments are in my head...
...often. I can become so angry at my people. It feels like if I can't do something for them... they don't have time or interest.
Besides being busy in their own life, it seeems they have a sense of entitlement..like to have a good life. My chronic stuff doesn't fit into that.
The letter at the begining of this post, I thought was great and I changed it a little to be more me, sent it to my children and got nothing... no comment, e-mail, phone call, nothing. The two friends I sent it to, gave me a great response and were glad for it, but family..I miss them.
I do get tired of trying to stay connected and endure the neglect. But what choice do I have? I'm already missing my grandkids something fierce.
So, I tried the honesty, now I try to minimize it.
I too have thought of how injured animals are cared for, but I think if I was one, I'd be "put down."
The neglect I live in..that I feel..is so hurtful that I turn it inside and blame myself, to try to control the emotions.
I think your way of thinking may be more healthy.
Thanks for the post.
_____________
My profile lists my spinal issues and other conditions that I navigate around daily.
Doing my best to be getting around and hanging on to this ride called life!
April 6, 2011 - 8:07am
#48
Savage
Blaming ourself is the worst thing to do. This is not the kind of situation we can blame ourself for. Being angry at people who are simply too ignorant to understand i think is fear human reaction. Very sorry about your kids not keeping in contact with you savage, i know thats got to be hard.
I think many of us feel used who was always called upon from friends and family when they needed help with something and we always rushed to there aid. Then we find ourself innjured where we can barely help ourself and they still think we should be helping them in some way I personaly done enough of helping them in my lifetime and decided i need to help myself now . I guess thats where the saying comes from= Look out for #1
One of my best friends still calls me usualy to see if i want to go golfing with him and his son, Thats kind of like asking Steve wonder who is blind in case anyone dont know, to go target shooting, His coment usualy is after i tell him his a moron, i thought last surgery helped you, Of course i explained many times i can barely walk without so much pain where i am ready to go to er. Well he never was 1 of the smartest people i know lol.
For now i am just waiting it out untill he breaks either a leg or an arm so i can ask him if he wants to go rock climbing, The fact is most of the world is self consumed and live as such. For anyone who has full family suport with friends giving moral suport consider yourself very lucky. For some of us the world has turned very ugly while we suffer with our injury while family is acting as if we should be punished for our injury.
Its not us that has the issue of having to feel any shame and guilt. Its those who do not understand who need to feel guilty of there selfish behavier thinking life is all about them and dont have the ability to reach out to anyone else to help them because life is all about me me me me me in there eyes"
Alex"
_____________
L4 L5 disc replacement in 2004=causing nerve damage'Flexicore disc. 2006 fusion same level leaving adr in. Fusion did nothing to releive the nerve pain.Pain clinic=every injection procedure avalable inc,razadamy, ablation, nerve stimulater trial,morphine pump trial all failed. Pain can be described as burning pain in lower spine penetrating in to left buttock,down left leg. Refuse to take lyrica or nuorontin do to its side effect,Leaving me with norco,valume,and flexiril at night.Which these medications only help with the muscle aches and stiffnes does nothing for the nerve pain from the nerve damage sustained from the adr surgery.Coming up nov.19th 2009 Lami, and hardware removal from fusion,for hardware just causing more pain in other areas.Hardware block comfirmed hardware is also causing pain in diferent area aside from the severe nerve pain on left side.Emg showed some posible problem above surgery are at L3 L4.
April 6, 2011 - 3:58pm
#49
Spinal Injury
Howdy Alex,
That was me. I have had less people giving me their lame stories when "I have a spinal injury", then they can conjure up whatever they want.
A "bad back", "sore neck" etc., yep everyone has had that, and then they become the "How to fix you expert." Drove me nuts! I know, short trip as my hubby says! (G)
Savage, my sister is a self absorbed wench! On my last surgery, she couldn't be bothered to see how it went! The only time I hear from her...is if *I* can help her with something. I love caller ID if you get my drift. To me, my family is that of my hubbies side of the tree. They are wonderful, understanding and supportive. I have found (and it seems Alex you're there too), I no longer waste my time, or get upset about the friends or family that don't get it. It's not worth adding that piece of stress in my life. Once I realized that they were toxic, it was like their cloud was no longer over my head!! 
Brenda
_____________
ACDF C5/6 2/08 - C6/7 8/09 - Neuropathy right arm and both legs - Cervical Myelopathy
10-11-11 PCF C4-T2 - C4-C7 Lamies; Surgery #2 Emergent removal large Hematoma!
L2/3/4 & L5/S1 fusions and Laminectomy on hold till neck fused.
For the full "Cliff Notes" please click my name!
"Life can knock us down, but we can choose whether or not to get up!!"
April 7, 2011 - 10:13am
#50
Thank you..
My name is Nichole, and I am new here.. In fact, I really signed up so that I could leave u a comment..lol. I wanted to thank u.. For writing this. I was already crying after the first paragraph. You seem to have put my thoughts into words, that I never had the courage to write. If u don't mind, I would love to use this.. I would really love for everyone in my life to hear my thoughts/feelings coming from your mouth;). So, again.. Thank u:)
User login
advertisement
New forum topics
Clinical Trials
Who's online
Connect with Us
Can I send this out in mass emails?
~My name is Amanda. I am 29 years old, married, and mother to a wonderful 3yr old boy =)
“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”
~Lance Armstrong
I really liked this, much truth to it. I think I'll give a copy to my boss.
Is this really healthy though? Expecting people who don't suffer what we do to understand? Looking for their sympathy? I gave up on that a long time ago. Truth is, there are no words or ways to communicate how chronic pain truly feels. I think changing our perspective so we are thanking God for the fact that they DON'T experience what we do is the way we heal. Of course, any opportunity to rest your head on the shoulder of one who walks in your same shoes is always a blessing as well.
As for the "normals" however. Let's just thank God for their lives and the normalcy they have while they still have it.
This reminded me of something that happened when I was still working. Well, actually it remined me of a lot of things but I want to share this one in particular.
One of my coworkers was always "selling" something to make an extra buck. It was always some kind of crap that I would never want in my house or makeup that I would never buy. At one point she got into selling jewelry that "healed", it was made out of copper and steel. She told me that I needed to buy a bracelet at the cost of $100.00, and I want to mention that it was very ugly! Expensive and ugly! I refused. The next thing I know, she's telling everyone else that I work with that if I was "really" in pain that I would buy it so I must be faking. I was so offended! But then, my coworkers were very good at offending me all of the time, so this shouldn't have surprised me. Oh yes, everyone judge me because I do "NOT" beleive in healing crystals, bracelets, or any of that other crap that people try and shove down our throats just to make a buck. But to actually be judged by others for this? Simply amazing! Yes, let's all give up our doctors and buy jewelry from her. Otherwise, there must not be anything wrong with us!
As to this letter, I would love a copy of it. Is there any way that I could get one? With the addition of a few more things, this is the perfect way to try and explain my life.
Thank You,
Jewels
It makes me sad, and it makes me mad. People I have worked with for years, then the last 2 or 3 years my nerve pain has become unbearable. When I'm late for work, they talk their dirt, I hear them whispering, I've heard rude comments. I would have thought they knew I was a hard working employee, for over 30 years and that there must be a reason or something wrong. It has just turned into a reason for them to gossip and say hurtful things about me. I just cannot understand that kind of thinking. I remember we had a little clerk in here several years ago who had some serious health issues and when they started in about her, I would leave because I would think, well how could you possibly know how she feels. I cannot believe how cruel others can be.
People I have worked with for years, then the last 2 or 3 years my nerve pain has become unbearable. When I'm late for work, they talk their dirt, I hear them whispering, I've heard rude comments. I would have thought they knew I was a hard working employee, for over 30 years and that there must be a reason or something wrong. It has just turned into a reason for them to gossip and say hurtful things about me. I just cannot understand that kind of thinking.
Mouse, I realize I'm responding to a 17 month old post, but it's as relevant now as it ever was.
I spent the first 10 years of my military career working harder than most of my compatriots. I showed up early and stayed late. I worked on reports and other work at home. I developed new training plans and syllabi on my own time when I was an instructor and stayed hours after flights for thorough debriefs. The officers I worked for back then remember that and stand up for me.
Unfortunately the last 2 years of my life have been spent in a fog of pain and depression. It's been impossible to explain to my superiors what I am going through and what I am honestly able to do at work. I try to explain how if I put in a whole duty day I will surely pay for it for days after. It forces me to use "breakthrough" meds on a regular basis, which certainly isn't where I want to be. It also just makes me miserable in general.
I spoke with our squadron's doctor and even he says he can't justify limiting my duty day because I have no physical ailment that justifies it...well, aside from the 2 rods and 6 screws, constant pain and exhaustion/lack of sleep.
Last week I caught my commander in the hallway and he said (paraphrase) "every [rank] in this wing is working their ass off. There is no job for a [rank] who doesn't want to work hard." He actually suggested that I didn't WANT to work hard. Like I have a choice. You're right, sir, I do have a choice. I can work my ass into the ground for you, even though I know you won't be there when I fall.
If I wasn't in pain I'd get myself back on flying status TOMORROW. Hell, I'd volunteer for a 1 year tour in Afghanistan! I WANT to do my job. I want to contribute. I want to feel a sense of belonging and accomplishment. Being in chronic pain, with no crutches, no brace, no visual scarring...makes me the target of some very nasty comments and rumors.
So far I am convinced that the only people that can understand what we are going through is us. That is why I continue to visit spine-health. I am very thankful for everyone here...for their insight, their knowledge and their non-judgmental attitude. "Normals" say such hurtful things and often it's completely unknowingly. But telling a person they don't want to work hard? That's just cruel.
Thank you everyone for being there for the community. Otherwise stuff like this would be too much to bear.
-Lonely
I am so sorry that you are serving our country, and have been for decades, yet they treat you that way now. I sometimes wish that all of my hardware was on the outside of my spine. Maybe then people would have a tiny idea of why I am in so much pain. I haven't worked outside my home in a "paying" job for 38 years. But I raised my 3 children I gave birth to, my child I adopted as an infant that has special needs, and had 77 extremely medically fragile infants in my home for emergency foster care. I also had different teenagers move in with us that were friends of my children that needed to stay someplace other than their home while in high school. Now even some of my kids do not understand and are not there for me. That takes away 3 of my 4 grandchildren that I love so much. My daughter, their mother, thinks that I am a druggie, and therefore am mental. I lived across the street from her for over 3 years, and more than half that time I was not allowed to see or speak to my grandchildren. Thank God they would sneak over to see me whenever they could. I now live only 2 miles from her.
I really get your fog of pain and depression.
The government does not understand either, so I get no disability nor medicaid. I am going to have to stop paying for my insurance soon so I have money to live on for a while. It scares me to death to not know when or if I will be able to get on medicaid. I have 5 more years before I qualify for medicare.
I am praying that since you wrote your letter things have improved for you pain wise and how you are treated at work. It is so nice that we have this forum to be able to communicate with people that know what we have to endure. Please feel free to contact me anytime you need a shoulder to lean on cyberly or by phone, or someone just to vent to. That goes for everyone else on here too.
You go girl. I thank God there are people like you helping to keep our country safe and to have freedom.
Jan
I have so much hardware in my spine, and have had 2 revisions, that I need to sit down with my doctor sometime and find out exactly what I have inside me now. I did know, but didn't write it all down. I know I have at least 4 rods, some plates, cages, 4 screws that aren't included with that hardware, and who knows what else. I have at least 11 different levels that have hardware. I have DDD, spinal stenosis, arthritis, and other spinal problems. I am getting my test SCS trial in 9 days now!
Jan