as I am right now going through pretty much the same thing. I'm 31 yrs old, with 2 kids, 3 & 14. I have had chronic back pain for 14 yrs. Walking and standing causes more pain for me in back and legs. Drs have concluded that there is an ongoing nervinflammation in my lower back, but nobody seems to know what causes it.

I have a husband, but at times I feel really alone w/ my pain. He has stated that he is tired of hearing about my pain and so on, so I try not to talk about it. He also thinks I exagurate the pain, and can't understand how I can walk one day and not be able to walk the next. But as far as my friends and other relatives, I feel like you do, that everybody would be tired to hear about it by now. I feel like people think that I always come with the same excuse when I'm invited for parties or trips etc. It's just that after a day at work I'm beat, although I work only part time. Then I have to lay down in order to be able to cook and clean and play at home. Again beat in the night. Same thing goes on during the week days, and then during weekends I just feel like I need the rest to be able to manage next week at work.

At work I am putting up an act. I work in customer service and people actually think I have the happiest day of my life, when I have the most pain. I guess I must be a good actress:)Mentally I enjoy work, cause it lets me think about something else than pain and lets me get out of the house for some time.

Wow, you have gone through so much in your life, it seems. You must be one strong lady!

to me like I am watching myself from the other side of a window, I can talk to people, but, it feels like it's all pretend. None of it is real anymore.

So very tired of the charade. Some days are good, but those seem to be the days I don't have to do "things", job, work, etc, Tasks in general just seem to be to much. Pain, stress, more pain.

Seems like doing something one day announces to my world, "He is fine" and they expect everyday to be fine. Novel idea that! More then one day in a row that is good! I've been bringing people down for so long I don't know if I know how to NOT do it.

Two weeks from today, I see my PM on my 6 month followup of the SCS implant. I'm tired and confused about what will become of my restrictions, what my "job" will do, all of it. I sometimes think dark thoughts, I don't have much enthusiasm for anything anymore. Maybe someday.

Yeah, I feel like I bring a nice dark cloud into the room. People ask how are you, Fine I sometimes say just to get it over with. Then they have to go and say "really"? What do I do at that point? Lie? So, I have to say "no, not really" I'm so tired of the questions I tend to just mumble something akin to "it is what it is and they can't fix it". No, I'm not really OK...

This is such a good topic,,, and we all know, most ppl don't wont to hear how we really are. I know even clerks, how are you today as they ring up my stuff, I sometimes feel like saying, and taking my time, .... do you really want to know, I am bleeping in pain, standing in line is killing me, bills are behind, lost my job, I miss my daughter, X-mas is coming, oh ya, and I am so freaking constipated. And just going on and on,,,,, now when ppl ask, I just say I am here, what to say, same ole story, even I am tired of it, grrrrr,

This is something only us chronic pain sufferers can really understand.

Hugs all

Eve

Flametails,

I've read your post a few times as I sit here, and I sometimes think we have it "bassackwards!!" In our own way of trying to make others around us comfortable we mis-state or don't state that all is not FINE! That is a "downer" to me emotionally sometimes!

I don't go into a full line by line description to people who ask the innocent "And how are you today?" but at the same time I don't tell them I am fine anymore when I am not! Don't get me wrong, if it is the casual person (like say a waiter at lunch) asking how I am today, I say "fine thanks" and go from there. For those who know me, I still don't go into major detail, but I will say to their inquiries either "about the same", or a bit sore today so they know that externally I may look normal, but still not happy on the inside. It also doesn't put them in the awkward position of having to ask if there is anything they can do "for me" to help.

Finnora,

So sorry to hear your husband doesn't want to hear it from you. Mine gets mad when I don't relay when I am hurting, or tell him if something new is going on that concerns me. We are in this together. Knowing he is there for me makes some of this easier or at least more tolerable! I hope he comes around for ya!

Brenda

make a good group so it seems.

I posted somewhere on here about yesterday morning, or was it day before? eh, they are all the same....

anyway, this guy I have not seen in months is in the hall when I walk in. I say HI. He takes one look at me and asks me what I'm mad about! He is a good guy, I suspect he thought something had happened on the way to work or something. I had to explain to the guy That "I hurt". He says, still? Yep, they don't have a fix for it either, Then had to explain the SCS and ended with that good old "it is what it is" line.

So, yeah dragging that dark cloud around is visible to people. I bet most of the people around here just think I'm a mean old guy. Not really, I'm not, honest, Here it is fall, winter is almost upon us, everything hurts.

I have some big work I am doing at home and honestly may just say the "H#!!" with it tonight and rest up so I can put more into this weekend. I just wish, I was the old me. since that is not going to happen, I wish, I had enough sense to say, NO I CAN"T DO THAT more often. It is easy to do here at work. I have that peice of paper with restrictions on it and everything. But at home, I just hate not doing the stuff myself so I keep wading in and floundering around. So far I am getting the projects done, but it ain't easy...

Does anyone here think, maybe if we all gathered together our clouds would merge and the rain/tears/pain and fears would pour out. The sky would clear and there we would be, sitting on a nice warm beach, little umbrella in the drink at our side....ahhhhhh, hey, I found my happy place.shhhhhh, I'm enjoying it....come....join me

Sand between my toes, the smell of suntan lotion and salt air, the heat of the sun baking into my body with its HEALING rays, my favorite drink in hand, music playing, my comfy chair, a book or magazine I've been meaning to read that just sits on my lap because I'm too in the moment -- that feeling of total relaxation and "all is right with the world!" -- OH, YEAH, I'M SO THERE WRAMBLER!

Let's all go to our happy places!!!

Smiles,

Judy

Flame tails,

Cool name! Except I hope it doesnt mean your personal tail is on fire.
I can relate totally to you as I am sure many on here can. You are in the right place for an outlet. To be completely honest with you, in my opinion there is some truth to bringing people down by our moods, our actions, and our thoughts. I have noticed it in my life and have even been told it directly by people. People have questioned me actually being in pain because I am not a parapalegic or crawling on the floor so I must be fine, to down right avoided me and told my depressed attitude or saying my back hurts made them not know what to do and want to stay away. I even dated a girl who knew I had a messed up back and when I would go to her place after work and want to lay down to decompress my back on her bed she told me to lay on the floor because I was dirty. My job is to fix computers all day. Im not a construction worker or mechanic. She even said “all you do is say my back my back (even though I rarely brought it up) and you don’t do as much things with me”. Ive had people tell me to stand straight at attention in formation for 30+ minutes at a time. Co workers ask me if im faking it. I could go on and on. But the moral of me saying all that is this.
Anyone worth there weight in salt will listen to you and support you. Even though I have had a lot of bad experiences with people and situations Ive had good ones too. I have come across people that are geniounly supportive of me. I still feel guilty for saying I hurt sometimes but they have never gave me negative feedback and are really supportive. All people will let you down eventually though just as we eventually will let someone down. We are all human fighting our own battles. But just because people let us down sometimes doesn’t mean they don’t care. Good people are hard to find. The best thing to do is to find them and to include them in your support system. Spineys (or anyone) cannot go through life completely alone, nor should they. We all need and benefit from a support system of supportive people. Whether you find that on here, or in your home or wherever, just appreciate it and cherish it. There are people out there that geniounly care about you. Even if you haven’t found them yet.

Take care,
Chris

Hello,
My doctor would say three fine’s and he knew something was wrong, living this life is not easy as we attempt to fit the life we had, into what if left of our capacity, that in itself is a unreasonable objective and we have unwittingly planned to failure.

We are entitled to be supported and we have some responsibility in how much we tell others, we do not need to tell them more than we should to illicit some form of support. For the “most part we are encouraged to hide failure and exaggerate success, although our fate does not depend on others opinions, rather on facts, it is a good idea to create an impression that things are going well “ even when they are not. This is a fine balance of disclosure, who to tell and how much, we are not robots and cannot be expected to cope with this existence without some periodic sad times, it is part of the chronic pain cycle, it will happen again in the future, even though we will overcome this event and have learned more skills for this continuing marathon.

They have a responsibility not to expect us to keep asking and have some understanding of how difficult living with chronic pain all the time can be. Having told our story we cannot then retract that information and knowledge and how others interpret it for inventive conclusions. For the most part they need to change with us and facilitate our plight, in the reality of not understanding some of our so called friends see no need to make these adjust and push all that responsibility on us.

It is good that you have highlighted your situation and it gives you some opportunity to change and decide on the next flight plan and specific requirements that will help support you specifically, we have all been where you are, it is always difficult and things in time will get better and improve. We carry that weight of imposed change with us continually and we all wish our lives were not as they are, who could have predicted these events.

Find positive people who encourage you, have understanding of how difficult life is for you and someone who appreciates the skill you already have.

I and we know you are doing a good job, you need to see that for yourself, write down those things you have achieved and your future goals, we may have to change our expectation of other people and see our responsibility in this supportive and equal partnership.

Take care John

I think almost everyone on this forum agrees with what you are saying. We get so many
"How are you"
"Gee, you look good, so you must be good"
"Iam sorry",
"Really, but you know I have back pain, I have to sleep in bed all day"

It gets tiring. Sometimes, I wish I could just put a big red marker on my forehand telling people, Yes I am in pain and Yes, I am doing something about it.

Now days, when someone approaches me and asked about my back, I just say fine and move to different topic real quickly. Sometimes that works

Different topic is where it's at. I found that the friends who Chris is referring to, will support me 100% when I ask them "from now on let's talk about anything but my back or pain". So instead of them coming up and asking "how are you" or "are you alright", I will get questions like "did you see the Yankees win their 27th WS".

We have the ability to make a huge difference in the cloud that hangs over and around us. I found that it was something that had to be addressed separately from my spine issues. Basically I had to wait until I was "okay" with the state of health and well being I was at before I could pursue changing the atmosphere around me. Once I did, it made everything else much easier for me and for my friends. When they found out that it was okay for them to come up and ask me about anything other than me, they were relieved and relaxed and became themselves again.

"C"

Our friends too feel that pressure of knowing what to say and when these words are appropriate, it may at time be some of the words we would not rather hear and an important lesson that in what and how we present ourselves is sometime how others feel or do reply. I have days when I promise myself not to use the P word, some individuals are never going to say the words I wish they would use, those are my expectations and it is not another persons responsibility to at all times cater to my unseen need. It was interesting in our group PM session that some individuals were not encouraged in what we said and all of us had pain; it showed me that although we may have had similar conditions how each individual wished to be acknowledged was always difficult to find.

If you live in, the pain, you and the outside world become attuned to wanting constant recognition for our plight, giving ourselves the days off is always beneficial, to see outside the condition that dominates our existence.

John

I would think every one of us can relate. When my close friends or family ask "How's your back?" I know they are genuinely asking because they care. I usually just answer "its not good" and we leave it at that.

They know they can ask more questions of me but I don't go into a long list of complaints. To me that serves no purpose. I answer "not good" or "its bad today" and then hopefully we move on to another topic.

I AM MORE THAN MY PAIN. WE ALL ARE.

I do the same as lisa. I tell them that I'm hurting or uncomfortable, but I don't go into details unless they ask.