quality of life outlook

[kyleh]

Quick background. 23 years old male, physically fit. Severe hernitation to L-5 when i was 19. Lost half of the disk height. Since then my joints have "decayed" in line. I now experience daily constant pain in my entire back, neck, hands, fingers, wrists, shoulders and crippling pain in my knee's when things are at its worst. combo that with really bad tinnitus and pretty bad depression for the majority of my life and I am in a pretty bad spot. I can no longer do anything that I used to with out experiencing pain and discomfort: Play guitar, exercise in any manner, sit and read, watch tv, sleep. I have tried meds and they have not helped at all. Cymbalta, pain killers, illegal drugs, yoga, exercise, hypnotherapy, acupuncture, deep tissue massage, etc. Not a single thing relieves my pain even an iota.

I don't know how you guys deal with this idea of management. I have gone from doctor to doctor begging them to at least figure out why this is happening. Zero clue what so ever. I went to Johns Hopkins and that was a bust. The Mayo clinic rejected my case. All the while things are getting worse. This is ruining every aspect of my life. The main reason is because of how isolating and all consuming dealing with something of this caliber is. The problem is that, for myself personally, pain is a trigger for the depressive nature of my mind. I've read books on happiness and they generally say that people, despite great accident, will return to the mindset they experienced before the event. I wasn't so lucky to be in a good place before all this started happening, so of course the only place I can return is to the purely miserable loneliness that I have experienced all my life.

Now, my question is how to approach this idea of management in a positive light. What is happening to me is unacceptable. I will never accept this decrepit physical situation as reality. I can't. Not with out thinking about killing myself. That is the only place I go when facing the reality of this in the long term. I do not understand the idea of looking on the bright side when your entire life focus has narrowed into one singular path. There is nothing that can get me out of my head because nothing relieves my pain. And what is a life of management? It is a death sentence. Life imprisonment. To me, management is never getting above ground. Its like a person struggling to float in the ocean, gasping for air. That is all you can do to survive, struggle for air. What is the point of living only to survive. That is not living in the slightest.

So what does one do when sentenced to a life of struggling. I am a perfectionist. Unless I can work to achieve a positive outcome, i.e. lessing my pain through fixing the cause, then I will never be satisfied. How do you guys do this day in and day out. It so ******* awful. I can't even think a few days down the road. I'm exhausted I guess. And I am only twenty three. Longevity runs in both sides of my family. As I see it, i have at least another 60 years feeling like this. How does one deal with that? And yes, this is a total struggling. I cannot keep relationships in the slightest, I don't even try anymore. Being that far removed from people (my age bracket does not have many who can even begin to sympathize) is so horrible. The worst part is I am gregarious, social, and outgoing by nature. But I no longer even try because I always end up in the same place.

I want to know if it ever gets better? Not the physical pain, but the emotional pain. My soul is what hurts the most. Being so polluted and so aware of it crushes completely. I honestly do not know if I will make it, because frankly, my question is make it where? If the finish line is the answer then I might as well be dead now. A life of hanging on to get to the end is not a life worth living. I'd like to believe to make it to the higher ground. And I can see it. But I cannot reach it. Not with this impossible weight on my shoulders. So we abandon hope in exchange for a distorted hope. A hope that it does not get worse. I can't keep adjusting my hopes any lower. Any lower and it will be subsurface. Below the ground. If your hopes are six feet under then where does that place you?

[Sarajmt]

Welcome to the ranks of chronic pain patients.  I'm sorry you're but you are.  You've already received some wonderful advice above and now I'll put in my two cents.

A long time ago, I read a story that concerned the birth of a Downs Syndrome child.  And I am certainly NOT comparing chronic pain patients to Down Syndrome children but it's the story that we have in common.

Pretend you're on your way to a fabulous vacation.  It's been freezing cold and you really dream of a warm vacation. You've packed your best tropical clothes and planned all the fun in the sun.  You even went to the tanning booth and the gym to make sure you look great in your new clothes.  You board the plane, have a pleasant flight.  The flight lands and you find that you have landed in Stockholm in the dead of winter.  And there are no flights home for a long time.

So what do you do?  Get angry and take it out on everyone around you?  Sit in your hotel room and sulk?  Maybe go to the bar and stay drunk the whole time.  OR you can accept the fact that you're in Stockholm and you're there for a long long time.  Enjoy the things that this new place has to offer.  Not like fun in the sun but it can be a rewarding trip nonetheless.  You'll need to adjust your expectations from a fabulously warm vacation to an extremely cold place that does have something of value to offer you.  You just need to accept where you are and what you can do there.

My version isn't nearly as good as the original but you get the gist.  I think about it when I'm down or angry about the pain.  Not what I planned so I have to adjust to the reality.

Sara

[namnam46]

My dear Kyleh,

I want to welcome you and to let you know how very glad I am that you have joined the Pain Management Forum here on MedHelp.


What a horrible thing for a person so very young to have to learn to cope with. It's such a shame to have this burden layed upon you at this age.

Everyone here has had to learn how to cope and accept the different Pain that they have been given to live with in life. I hope and pray that you will find a way to do that.

All of the members that have posted here have given you some excellent advice on how to handle it and there isn't much that I can add to their posts!!  Except to say that I hope that you might consider seeing a Pain Psychologist to help you go thru the process of accepting your pain and learning to live with it.

As Mellie said, Jaybay really explained everything that there is that you need to go thru and accept about it.

I hope that you will remain on here and keep us updated on how you are progressing in handling what lies ahead for you. We really care about you and what you are having to face each day.....Sherry

[mellie4]

I think you're right about depression being anger turned inward.  At least in some cases.  

[SageRave]

Once you stop looking for a diagnosis and embrace management, I am not one for putting on a brave face and fighting to keep life the way it was before pain hit. You can have more control over your life, arranging it to encompass your limits, once you start building your own management plan...and I caution against letting a doctor do it for you, or try to push you to do more than you absolutely WANT to do.

More often than not, it has been my experience that depression is anger turned inward because it has no place to go. As you build your own plan, be sure to analyze the things, and people, that trigger your anger. Often the doctor's attitude is a trigger, but it is hard to find a new doctor. Limit your face to face visits, if possible.

If there are family members.who don't understand and bring you grief, you will limit contact with them as well.

There are other steps you will take as you become more aware of how much more control you can have over you quality of life once you adjust to a new approach that doesn't include ending the pain, but does include your putting yourself first.

Let us know how you are doing, from time to time.

[mellie4]

Just want to second what JadedSweetheart said about becoming a member of this community.  It does make a difference to be able to talk with people that really understand what you go through ... very few people in my life, maybe one, have any idea of what I go through.

I feel so badly for all of you young people that are dealing with this.  Pain is pain regardless of your age, but when you're young, it shouldn't be the primary focus of your life.  And those of you with young kids, especially babies, have it tough, too.  I got my fibro diagnosis when my youngest son was nearly a year.  And my arthritis in my hands got significantly worse a few years after.  I remember trying to tie my boys' hockey skates when they were little and it was agony!!  Thanks to all the dads that helped me in those days.  It gets a bit easier in some ways when your kids are older and you don't have to do hands-on care.  There can be other, different challenges, but I find it a bit easier than when they were babies.

[JadedSweetheart]

I agree with everything mellie and Jaybay said.  It's so true how CP affects all aspects of our lives and how difficult it is to accept our new life.  I also realized from Jaybay that I'm still in the "I'll get it fixed and be back to normal" stage.  I really want that and to live a normal life, although recently I've been reading so much about failed surgeries and pain after surgery, that I'm realizing I just need to learn how to live this life to the fullest.

Kyleh-  It would be helpful to know what meds you've been on and are on now.  Also to know what diagnosis you've been given and if there are any plans by your doctor for more surgeries or what they've recommended.  It sounds to me like you have Degenerative Disc Disease, or DDD like I do.  I'm only 27 and have two kids and one on the way.  I used to be able to go out all the time, I was a karaoke nut, and just loved hanging out and having a good time.  Now I realize how withdrawn I am and how this has affected me for life.  

It's not a death sentence.  It's possible there may be meds you haven't tried that can help you be active again.  It's possible there may be surgeries that will help you out.  One thing I've heard that really helps is strengthing all the muscles along your spine.  It can hurt like hell to work muscles that have begun to atrophy, but I hear it's one of the only ways to get out of pain.  

I hope you stick around and become a member of the community.  We really do help eachother out and it's good to have people who understand.  We even have some members around your age.

[mellie4]

JB, you are amazing.  I think that is probably the best thing I've ever read.  You are so right on target.  The struggle with acceptance of myself as I am now is the biggest hurdle for me.  I think most people with CP tend to be looking for the cure that will bring us back to normal.  Trying to accept our new normal can be frustrating.  Some days I do better with this than others.

I have isolated myself from everyone.  I keep in touch with people through Facebook and my online communities.  I was always someone who loved to go out.  I volunteered in the kids' schools, went to their games and practices, had my own friends, and worked at a job I love.  I have none of that anymore.  And I hate bumping into people because I feel like I need to explain.

I have learned that I have limitations.  My kids have been pretty good about it.  So far this year I have not been able to get to either of my sons baseball games.  I feel like either I have too much pain or I'm too medicated.  They've been very understanding about it.  I still try to stay involved by talking to them about the game, how it went, who made what play, etc.  I know it bothers them that I'm not there cheering them on, but they have been pretty good at understanding it.

I'm awaiting approval from worker's comp to see a pain psychiatrist.  I'm hoping he'll have other suggestions, like acupuncture, hypnotherapy, etc.  And maybe he can help me with the struggle I have with acceptance.

Thank you for your comment, even though it was for the OP.  This forum has really been a lifesaver for me mentally and emotionally.

[Jaybay]

I've been in your shoes, but for different reasons.  My pain stems from adbominal scar tissue that leaves my bowels partially (and sometimes fully) obstructed 24/7.  That means in addition to pain, nausea and vomiting I'm very restricted in diet - mostly liquids.  I've lived with this for a dozen years and there is no hope for a cure in sight.

Yes, I'm on pain and nausea meds and also take an anti-depressant.  Like you, I had suicidal ideations for a long time.  For the first few years, my goal was a complete cure and return to "normal" life.  My life went on hold before the numerous surgeries I've had.  Like any chronically ill patient, I've had to adjust what "normal" means.  That's where my pain shrink steps in.  She's actually done me more good than all the surgeries and medications.

Each of us with chronic pain has to build a new life in our own way.  It's very difficult and we constantly fight backsliding into that dark place that paralyzes us.  I'm talking tiny baby steps over time.  Once I was a very active person and loved weightlifting and fishing and other physical hobbies.  That's all gone, but I've replaced them with things I CAN do.  Even if I can only get outside to wander around my garden a bit, that's a victory.

For me, chronic pain has sharpened my thinking skills since I live mostly in my head these days.  I've always loved reading, and that love has kept me alive.  Anything that you can do to distract yourself from your pain is a victory - even if it's only for 15 minutes.

Everyone here I'm sure has been through the isolation phase as we reach the point of acceptance that we may not ever be 100% again.  We back off from other people and go into hiding hoping to spring out of the hibernation cave as our old selves again.  Usually, that doesn't happen.  Just as we must reinvent our lives with pain, our friends and family must also adjust to the change.  The people who love you will understand that you can't do things you once did without even thinking about it.  They'll accept your physical limitations and try to help you work around them.  The key to that process is complete and total honesty.

If you're going to pull yourself out of this abyss, you have to try not to "become your disease."  The more you focus on it, the worse it will be until your entire life is only the pain.  Don't let the pain be your one and only companion.  I had to force myself to start picking up the telephone and asking friends about their own lives to draw them back into mine.  At the same time, I had to remind them I'm still in here, nothing is going to change any time soon but I still want them in my life.  Not all of them came back, but I have very special relationships with the ones who did.  Nobody who is healthy can understand what we endure, so don't expect understanding, but rather acceptance.  The less you focus on your illness, the more people in your life will see that you are still you, and that you have value.

Dealing with chronic illness is a process, and it's a long and difficult process, but not impossible.  For me, the mental work was harder than the physical side of it.  All too often we patients only address the physical and the mental aspects are seriously neglected.  Don't make the mistake of thinking you can do that work yourself.  A pain shrink just might end up being the best thing that ever happened to you.  Can't hurt; might help.

[mellie4]

Oh, boy.  You are in a tough place.  I can certainly empathize with you on several levels.  I was also very outgoing, social and gregarious, and I've found that the CP and the medications have robbed me of that.  I no longer want to be around people.  I'm fortunate that I have kids.  I don't know where I'd be without them.  They force you to try to search for answers.  Though to be honest, I don't feel like I'm much of a parent at the moment.  Life was very different for them and me before all this.

I guess for you I'd wonder what your options are at the moment, what meds you're on, and what your doctors say (and what kind of doctors you see.)  Depression is a part of CP and if you were prone to that before, it certainly would be magnified now.  I struggle with both depression and anxiety myself.  And it roller coasters; some days are much worse than others.

Do you have family?  Friends?  Anyone in your life?  Do you work?  There are so many unknown things about you that you don't mention in your post.  

I think you need to revamp things.  Maybe you need to find a really great pain management clinic.  Is surgery an option for you?

Keep coming to this forum.  You'll find support here and you may also be able to help someone else.  Support, I think, is one of the biggest things you need through CP.  It's very rare for anyone IRL to understand what's going on.  I have a wonderful family, both immediate and extended, and I have fantastic friends.  But none of them even begins to get it.  I end up saying very little because they just can't understand.  Unless you've experienced it yourself, you can't fathom what it's like.

I will say I find it helpful to be on these forums.  Not only do I get the support I need, but I hope that maybe on occasion something I post helps someone else, which makes me feel at least the tiniest bit useful.

Hopefully, you'll give more information and others will be on that may better be able to help.