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Old 04-17-2014, 05:35 PM #11
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Quote:
Originally Posted by evandtwins View Post
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.
Have you had an EBV panel done?
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Old 04-17-2014, 07:15 PM #12
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I just want to say I understand everything you are saying, for months and months I can be in such a deep depression I think of ways to do myself in as the pain of being awake/alive is too, too painful, feels like torture.

What stops me is my family, thinking of them, otherwise....

I have cervical spine problems, have been in horrendous agony, pain in neck, back, left arm/fingers, have to sit with warm bean bag contraptions around my neck and on my arm/fingers.

Pain/numbness is now in my left leg and ankle/foot.

I can go days and days in, as I call it, la la land, feel pretty positive, well as much as I can be then....kaboom, here come those feelings.

The thought that I may have to live with pain for the rest of my life, when I have always been such an active person, almost does me in and I bawl my eyes out.

Just want you to know I understand, you are not alone, peace....
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Old 04-17-2014, 07:44 PM #13
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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

Last edited by zorro1; 04-17-2014 at 08:23 PM.
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Old 04-17-2014, 08:12 PM #14
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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.
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Old 04-17-2014, 08:46 PM #15
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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,
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