Your statements above ring true with me also. When you're in pain -- it's all about the pain -- so hard to focus on anything else.

Thank you for sharing your feelings. If it wouldn't be for this forum and the opportunity to share with others, I would be in despair. Even closet family and friends can't understand the emotional toll chronic pain takes on the person they know and love. I, too, had to re-evaluate who I am now that I deal with chronic pain.

It's amazing though, people who I thought would always be there for me disappeared, but, others came out of the woodwork to lend support and a shoulder to lean on. I'm at a good place now and going through this ordeal has made me stronger and more appreciate of life's simple pleasures.

Take care,

Judy

Thank you for this post. It made me realize that I'm trying to find myself too and you've put into words so beautifully how I feel and what I'm trying to come to terms with.

I've been a necky for a year now and am new to lumbar issues - I'm figuring out that I'm going to be a spiney for the rest of my life. I'll never be pain-free, as I thought I would after my ACDF.

It's amazing how long it takes some of us to realize that. I've been dealing with spine issues for just over a year now - how could I have thought for so long that all this was just temporary?

I don't mean to get off-topic, I only mean that there comes a time in every spiney's life when you realize that you'll always have pain of one intensity or another and that you have to discover who you are outside of your chronic pain.

I think it's very sad when the "I'll be pain-free one day" bubble bursts and the realization of your future with chronic pain slaps you in the face. It's ok to mourn the loss of who you used to be, but we must also learn to love who we are now and adjust ourselves mentally so we can keep going. And not just for ourselves, but for those who love and care about us because, unfortunately, they're making this journey with us.

Thanks again.
Cath

There really needs to be 2 Worlds...One for normal people and one for people with chronic pain, spine issues and depression...Honestly because being someone who was healthy in my teens and early 20s I realize that was a totally diffrent life which I never expect to live again..There should be one country where all the people with pain and injurys to the spine or major joints go to live..that way they (we) could all live in a place with out the pressure of trying to live in a society where only the strong and healthy get ahead unless your already very wealthy...If this sounds crazy to you think about it again when you have an entire bad year or two...The best part of having a country/world for people with major injurys would be drug use would not be frowned upon and everyone would work together to help each other..Because in the Real World weak people get exposed...but most of you probably already know that...and if you dont you will in time..

Goffman in “Stigma” the social commentator, suggested that once we let the genie out ( of our secret world )it can no longer be returned to its place of origin, we tell those who we surmise would assist us in our plight for moral and supportive comment to only see that misguided idea return with interest, and wish we had never told them.

To fair some are not happy when never asked and others equally perplexed when you become the sole topic of conversation which is understandable, not to tell others empowers us in that would then not be perceived as just a pain patient and nothing else. It is a balance and we need to sift the pleasantry of, “you look better today” and other descriptive term based on perceived appearance rather than our reality.

The key is to espouse normality and physicality while simultaneously dealing with the pain, Eleanor Roosevelt said only you, can make yourself feel bad about what they say, do not give them that gratitude and devise an appropriate strategy of suitable replies, smiling is not assertive, our duality of simultaneous existence is a problem for those around us and ourselves, some people I have never told them of my condition and they do treat me differently, everybody has a cure or ancient remedy or the right food or magic medication, have you tried…. no I just sat here and let it wear me down.

Be proactive… act, I am the best candidate in a supporting role, although our pain may be ever present we need to work together and not allow it more priority than it needs to have, while acknowledging its limits and frustrations.

Try it, tell one person your own version, make it up embellish, tell them you are in pain and you have started at a disadvantage, implied or not.

John, running jumping and still laughing, allegedly !

I am a mother of 2 young absolutely wonderful children, an owner of a small gardening business, a wife of a great guy for 15 years, a daughter to 2 aging parents and a sister to an older brother and a sister. A member of AA in good standing and friend to many. A firm believer that God is apart of this journey of chronic pain.

And if it wasn't for the above I truely would go crazy with my chonic pain!
patti

Lala329, you have put into words what I have been trying to compose for some time, but especially of late. What a coincidence!
While I'm not depressed, I can see the feelers approaching, and may be clinically into mild depression. I'm aware of it and will keep a close watch.
What I miss is spontaneity, a clear head, and wanting to do things.
I tend to retract a lot for a quiet life.
If I have a day out I cope OK at the time but after 5 hours or so I start to feel edgy and have to stop whatever it is and retire to a quiet place for a while. If I can't I feel ill and get grumpy and short.
Sort of like a stimulatory overload.
I think with chronic pain that your tolerance levels drop a lot, and you can put up with only so much, enjoyable though it may be, before needing to shut off for a while.
Being a car passenger is the worst as you are constantly aware and looking. I often travel with eyes shut now (not so much when i am driving).
You just get tired of not feeling well, every day and night is a battle of some sort. While I can often get the pain level right down, the brain fog and inertia persists.

That is so well put , we have to accept this to be able to move forward , because this chronic pain is here to stay . And you have put it in such a way that this i feel will help others that struggle to come to terms with this . Well Done !

Angie

Funny thing is that after my last post I came good, felt bright and clear headed.
Finished up stripping and cleaning the dishwasher!
Realised later that this was the effect that the massages have on me-they just lift the muscle tension away.
Bit sore today, so I probably over did it.
It is just so nice to get the head back!

P.S. 4 hours later and very sore after cooking a big chicken and rice stirfry for a party tomorrow.
Have really overdone it now.

After YEARS of injections, procedures, surgeries, and, finally, a spinal cord stimulator I'm dealing with the bursting of the bubble: the realization that I will always be in pain. I am not dealling with it well. Seemingly out of nowhere, I am grappling with a horrible depression. In hindsight this depression probably started after the fusion failed as I already had stopped doing a lot of the things I used to enjoy. I used to sing with a symphony chorus and there is no reason I cannot do that today but I don't. I don't want to go to work. I'm working on becoming a recluse. I don't want to talk to anyone. I cry alot. At this point, I am totally defined by my pain. I have an appointment with a psychiatrist on Tuesday. After a couple of months, I don't think I'm going to will my way out of this. I used to be strong, athletic, busy, a go-getter. I miss the old me so much. I don't like this new person at all. Susan

i've read this thread once...now i want to go back and read it again.
all of us have lost part of our previous lives.
our focus has changed. we do see more....life is a battle...and we are still in the ring. but now we use our minds more to continue our battles. i think you might now call us the wise ones

pete

After reading this thread a few days ago, I've thought and thought about it... To tell the truth, I really don't know who I am anymore, all I know is I'm not the same person I used to be physically, mentally and emotionally. But, I have accepted that I'm not the same person, and am moving on and forward. I hope that at the end of my journey, through all the good and bad, mistakes and lessons learned, I will end up being the best version of myself that I ever was!! That is my goal each day, anyways, to be a better person - so I hope that I am never the same person I was when I woke up in the morning (which, I admit, is usually cranky til at least my second cuppa java!! )

Please forgive the length of this post, I just need to get this out--having a rough night.

I just joined this forum recently--only posted once, but have been reading many others. It's the middle of the night and there's no sleeping.
I was 27 when my back problems began, I'll be 45 this month. My surgeries were in '97 & '99.
Now I have this morphine pump and oral meds for breakthrough pain (which is daily).
I don't know who I am right now, though I know this feeling will pass. I do know that I am so very afraid of where my back issues are headed.
We all know that feeling of being overwhelmed by what the doctors tell us.
At my pain control clinic there are three doctors...
with three different opinions. I usually only deal with two of them. The main doctor is on the passive side, more in favor of the "let's wait and see approach," while the second is more aggressive.

I had to go in for an emergency visit last Thursday because of a cluster of muscle spasms in my left lower lumbar. I happened to get the aggressive doctor (who is really very good), but scared the hell out of me. He said my nerve endings in the joints are very inflammed and angry, and they are causing the muscles to spasm. Actually, the words were far more technical, but I don't remember what it is called. Next time I will take notes!
He is ordering an epidural and a CT scan. After several trigger point injections and more scary technical jargon, I left.
So far, the facet blocks and botox have been short lived. Maybe the epidural will help, I don't know.

Lucky for those reading this, I can no longer sit here and will try sleep once again.
Thanks for listening.

I used to just roll on,go with the flow,and not really think about things so much.Now I have to think about every stinkin little thing,can I bend down to pick up the rugs to shake them,can I make it to the grocery store today,can I clean the bathroom,can I walk to to get the mail,or will I not make it due to a spasm...etc Thinking about all this kind of stuff makes me feel like a whining hypochondriac,and even though I try to ignore the looks of disgust I get from my "loving husband",it does bother me.I used to be independant,and I felt secure in knowing that I could take care of myself,I'm not so sure about that now,and that has drastically changed me.I adopted my daughter when I had a great job,now I have applied for disability,not at all how I intended things to go.
And I am uncertain of the outcome for that.So...yes I have changed alot.And like Susan,I don't like this person,this beat up old hag,and it makes me mad.

I am now down to only two humans who would bury me. My social tolerances have plummeted. 2 "friends", this is very trying on them. 4 cats, their fur hurts my right leg, and when they get schizzy...! Not least is my daughter, haven't gone to a park in years. That's rough. Fortunately, I like a cartoon.
I used to be very passive. Now, staving off instincts that well up aggressively. I take any comment wrong now. "Looking better today", means I didn't before!?! It has taken 2 years, but, I think I am finally ready to accept this malady, for all it entails. As opposed to forcing the hands of proffesionals. Got kicked out, once. Surprisingly, owning this condition, now, took a little weight off. Or maybe fewer people results in less stress. Anyhow, RSD really does make me who I am now. Hard to turn off involuntary reactions! Yet, will continue to make the least bad about it.
Thanks all, and do take care.

i was an electrician for many years now any one will tell you that this is a very energetic job ..not just the traveling but the weather on building site and scaffolding and humping tool and cable about ..blar blar..blar..now some people could manage an office job with pain but in my job ..no chance ..so retrain i here you say? once upon a time i did i went in to sales and i am OK on a laptop and i wanted to get in to the medical profession ..i wanted to be a paramedic {but not enough qualifications .but then i tried to get a job taking bloods and doing hart tracings at my local hospital {this was when i was not too bad with my pain and could have managed a part time job ..BUT ..because i have a medical history as long as you arm .no one would take me on for insurance reasons .i have just turned down a fantastic job working for the man who trained me to be come an electrician {he wanted me to be his store man /order person with a bit of delivering for his security company .but i have had to turn him down because i could not manage it and i did not want to let him down as he is such a kind man .i mean if he wanted me to collect some equipment from the wholesale and deliver them 100 miles away and i felt ill ...he would be stuck and i did not want that i have become unreliable now through ill health .try as i might i carnt say from one day to another just how i will be ..it is a shame to be cut down in the prime of life but these thing happen .my brother in law had a motor bike accident over 2 years ago and he has gone from a health energetic man to a wheel chair bound man who needs 24 hours care ..who saw that coming ?? we did not!! and he is only 50 ,some can do a job with pain ..and good on them but others carnt .that's just how it is .i am not liked on my street by some because they see my nice house and cars etc and the see me at home all day and they get jealous and i have names screamed at me calling me a scrounger and lazy it sometimes gets to me because they dont know what i have to put up with every day .but others that know me feel sorry for me and would not ever belittle me .some people can be so cruel....sod em!!
STRAKER

Chronic pain is not my primary.

First - I am a man who has spent time since he was 20+ to learn to live each day the best I can. No I did not begin this with THAT attitude to start out!
I'm a Dad and have 2 kids, Sole custody parent, they were 5 and 9 when the X left. Another 2 years and the 5yr old is out.
I am a friend, companion and lover to my sweethreat [even when the body cannot respond, we know that we care about each other]
I still am blessed enough to be able to work, even though I would never be able to work anywhere else except in volunteer capacity [I am the manager, I have been lucky enough to move my workday and include "homework" in my job.
And yes - I have both acute and chronic issues that can sidetrack me if I let them get out of wack.
I try to laugh every day and tell jokes every day and hold my tongue when I am upset, cause I don't want to hurt anyone with my words.
I may never have a "pain-free" day, but I still have moments of bliss that I can patch together at the end of the day and give myself a pass mark, and tell myself that I had a good day!

Very well put. We are who we are in spite of ourselves.

Sure, we've been dealt a crappy hand, but we play them anyway.

Nice thread, Lala. Looks like you've got alot of people delving into themselves and they've given us some thought provoking responses.

Well played!

You know, I enjoy the fact that there is a well-read group here. As a group, I see a lot of thought provoking subjects and that keeps you tied to both how are you[me] doing right now and how do I improve things, regardless of whether today, I am having moments of darkness, there is always sun somewhere.