I am very ashamed to admit it, but a day does not go by that I don't ponder my demise at my own hands. The pain is so damn awful, and I feel like I am stuck in a world that no longer has a place for me. By that, I mean that working and providing for my family is a requirement, but each day of work involves nothing short of monumental suffering. This is no way to live.

The real genesis of my suffering is a profound sense of hopelessness. My will to survive causes me to think that "there must be a solution" that, while not totally elimininating my pain, will at least restore a reasonable quality of life. But at a cognitive level, I also am keenly aware that those options may include what mathmeticians call the null set, as in none.

I have tried nearly every prescription ever mentioned on this site for my 20 years since this damn diagnosis, and none have done much of anything for my pain. Supplements, ointments, everything. So...what am I supposed to hang my hat on? What is supposed to be the genesis of my hope and faith when the compounds that they prescribe today (with one or two exceptions) are the same as were prescribed initially 20 years ago? Neurontin, Elavil, etc?

I am not trying to minimize other people's problems, but when, for example, someone has a relationship problem, such an issue can be overcome one way or the other over time (albeit with much pain and suffering in the interim). How is my PN to be resolved over time so that I retain the will to carry on? Has science given me any reason to be optimistic? Cell phones over 20 years are infinitely better. Care for PN? Not so much.

Now, I do not have any specific plan to take my life. I have three beautiful boys and a lovely wife. What is incredibly sad, however, is that despite all the wonderful things in my life, this one monster called PN outweighs literally everything else such that I think everyday just about making the pain go away.

It's just that contemplating your demise and wishing sometimes when you go to bed that you would not wake up in the morning is no way to live. The despair has changed the person I am. People can see it, sense it, feel it. I have not performed like I otherwise would have in my career, and I haven't been as good of a father and husband as I wish I was, because while I fight like heck to not let this disease tear me down, the truth is that it has and does, one day at a time. It has changed me and who I am, and I am angry at it for that. The funny person who had so much ambition and energy is suffering a slow, protracted metaphorical death at the hands of a dreadful disease about which few are even aware. I don't know if that makes me more sad or angry.

I have the very same thoughts, feelings and pain. I am about to have surgery that my doctors tell me is very risky and will in no way improve my condition and may even take my life. However I can't just sit here and not try anything. What if it does work, my life will be changed and I can enjoy it instead of being consumed by this. I was working my way up in my career and it has come to a complete halt. Spent ten years in school and they money it took, all for nothing at this point. Sucks. I can offer no comfort other than your not alone.

What sort of surgery are you planning to have?

Wow. These are some of the best/most thoughtful posts I've read on this site—ever—every one a gem. I agree with everyone/everything. There's not much/anything I can add, and that's saying something (for me).

I come from a place of multiple chronic pain issues, each one fighting the others (and me) for precedence every day.

Evan, this is not just a PN/SFN issue; FWIW, this is a chronic/intractable pain issue.

coping intractable pain

The Intractable Pain Patient's Handbook for Survival

Coping With Chronic Pain

I don't know if a live (regular meetings) support group would be of benefit to you. They're easier to find in large cities, but some have popped up in other areas, depending on demographics. They helped me until I didn't need them anymore, but they're still there if I do, or I can start one.

Mindfulness Meditation(?)

Use the anger. Turned inward it becomes depression; turned outward and focused it can be a powerful tool.

Your greatest strength/support lie in your family—in the faces of wife & children. But you know that.

Doc

I agree with what DrSmith just said. There is very little to add when so many have already said such great stuff. I just want to add my support.

I have read your posts in the past, I always sorta relate in an odd way, since I have twins myself. I think of you and your situation and others like you, who must provide for your family and continue to work despite what hellish pain you are going through. I feel ashamed because I am not the provider, I dont have to work, yet I feel all the emotions you described. I can not imagine the burden you carry above and beyond physical and emotional pain knowing a family relys on you. It brings tears and pain to my heart. I wish so much that I could say or do something to relieve even one moment of the pain and fear you feel.

As a Christian, I always thought I was a strong woman, able to stand firm in any trial. I still feel that way, but not in the same way. My faith is still strong but has altered in ways that is hard to describe. I would never commit suicide but my mind wonders how on earth I will live with chronic pain another 50 years. Is it the same to wish something may happen to me to end it instead of suicide? My pain is not that bad yet, and Iam thankful. But its the thoughts of 50 more years and what is to come that leads me down that dark path. I remind myself to live in the moment, or the hour, or the day.

Fear is my real bondage. Fear can kill you more than physical pain. Fear messes with your mind and holds you in bondage, unable to move or breath or think cohearent thoughts. Fear is a stronghold that can literally kill you in my opinion. When I control the fear I break loose of its bondage.

My heartfelt prayers are with you, and while those are only words to you I still believe they are the most powerful thing I can do for someone and the most powerful thing someone can do for me.

Stacy I am right there with you when you talk about fear I have other issues as well with health. My PN has not really taken off as yet so the fear of the pain I may have to deal with along with other pain issues has a hold of me already. It can be consuming.
All of this just makes me sad I feel for everyone suffering

http://neurotalk.psychcentral.com/thread202686.html

This is a really nice thread dealing with a topic in a sensible rationale manner . The fact that nobody is blindly crying out "dont do it" shows that we have all perhaps considered our own mortality at length

"The despair has changed the person I am. People can see it, sense it, feel it"

That one line for me summaries who I am and I have always said that people with Pn lead lives of quite desperation. Not a nice way to live

personally I no longer fear things related to death. for example, A sudden chest pain no longer triggers panic. My plane getting caught in an electrical storm in violent turbulence triggers a silly grin LOL.

The thing is thoughts of Suicide can bring a feeling of peace and contentment . Its a fact that a large portion of people who suicide are hugely relieved once the decision is made and probably the reason why people say " I cant believe he/she did that because they looked so happy"

But we all push on in the hope that the next few years will produce some type of cutting edge research into pain control

Not much more can be said.
Your family still appreciate you.
I grew up with a mother in chronic pain with no hope of change. Ever few years they would perform a chordotomy (spelling?) to relieve some symptoms but naturally it added now issues. She knew one day should would be a quadriplegic and have to be in care.
She did manage to inspire many people over the years and was a strong advocate for euthanasia. As kids we learned to roll with the good days and bad. A lot of our friends would get a shock when they understood in our teens years what that sort of life was really like.

But it helped to make me who I am today and I'm grateful she never gave up along the way.

Like others when you need to find a way to vent and let it out and I hope it helps you to gather the strength to move forward and find the joys still in your life.

Your post could not have come at a better time. So many of us want to say the same thing at times and just reading the encouragement others have for you is uplifting to so many.

Thank you for having the courage to put it out there. I feel for you literally. My own children are what keeps me at bay so many days when I feel like there is no way out.

It is a blessing to have so many people on this forum who care and who post their knowledge so that maybe, maybe one day a lightbulb will go off for you and something will make yours and mine a better quality of life.

XoXoXo,
Cat