THIS IS REALITY FOR US... some words from my fellow PNErs

pianogal in CA (age 34) writes:

feel dispassionate about details of my life bc can't live them fully.

overwhelmed w roads to try.

house. decor. body. image. look. husband. sex blech. friends. music. career. news. finances.

even God sometimes I hate to say.

it's like what can i do. why care.

parts of me care but not enough to solve the giant mess.

obsession w body wanting healing of body so all elements of my broken life can b healed too.

everything is chipped torn dusty broken in a room off to the side... till i can come back to life.

Nick in MN (age 31) writes:

Dear Friends (or acquiantances if you prefer),

I would like to share a bit of what was on my mind today about who I am. Who am I anyway? Is it my identity? I am a husband, son, brother, friend, musician, goof ball, video game addict, insurance underwriter, owned by a cat, and many other things that people tend to be. I have become a PN sufferer but that does not change the other things, PN can't have them! But these are only part of me. Is it how I feel? I'm only 31 but I've had a chance to feel plenty of the things that come with being human. Happiness, joy, sadness, fear, depression, desire, anger, pleasure, downright weirdness, etc., etc., etc. I've been introduced to pain that I didn't think could exist outside of the pits of hell, and have come to find out it could be worse!!! I believe it is always okay to feel the way you do, you don't need to justify it to anyone. It could be argued that these sensations and emotions make up the whole of our existence. But that's not all either. My brain was grinding on this for quite a while and I finally came to the conclusion that I am just me. Wherever I go, whatever I'm doing, however I feel, I am still me and no amount of pain or any diagnosis will ever take that away. God has given me this life; past, present, and future and nothing will ever change that. Now that that's out of my system on to the toast: Here's to all who are struggling with pain right now may you find relief quickly may loved ones surround and support you may the road ahead bring you kindness and compassion may God lead you to healing and peace when you are down may hands reach out to lift you up when you are strong may you reach out to help others who are in need and may you always remember who you are Cheers! *clink*

Nick

S in CA writes:

MY PAIN

My relentless companion

ever there

ever waiting

My pain

Now louder — did it hear its name?

Drumming into me with each footfall

on the pavement

I stop to rest, it smiles quietly.

It lies in wait for me to grow weary

and then it is THERE

LOUD

ANGRY

BURNING a hole in my deepest secret flesh

OW – go away

what do you want from me

what did I do

why do you haunt me

Leave me

Let me be

Let me live

Let me work

Let me love

------------------------------

Pain Rising

The pain got louder. She could feel it growing, tendrils twisting sharply in the left side of her pelvis. How much longer would it be? Would she be able to last?

She shifted in her seat, trying to ease the burning. She didn’t want to take another pain pill. What was it about tapping, distracting the brain? She tapped the side of her wrist and the fleshy valley between her thumb and forefinger, trying to remember the pattern.

Nothing. Just the patient, insistent, throbbing flame.

She sighed. Nothing worked… Not the doctors, the expensive tests and treatments, not the healers, the meditation, nothing. Every time she researched new treatment options and approached a new specialist, she was so hopeful. All the holistic, touchy-feely stuff was stupid, a waste of time and money. Am I crazy, she thought? Did I manufacture this? On some subconscious level, am I CHOOSING pain? Why is this happening to me?

Oh shut up.

Get back to work. Quit feeling sorry for yourself. Are you going to let this screw up your whole life?

I wish I was dead. No, correct that. I wish I had cancer and could go through the chemo and have my breasts cut off or whatever and then get better. Then I could have a life. Or even if I died at least it would be over.

It was the pain, the never-ending, 24-7 pain that was driving her insane. She could empathize with suiciders – it seemed seductive suddenly – just a few handfuls of her pain medication and drifting off to sleep. That would be easier and less messy than the other images she had – of taking a sharp knife and cutting deep, into her urethra and beyond, where the pain screamed. It woke her from sleep, talked to her as she showered, bathed, dressed, tried to work, tried to live, tried to love. SCREAMING, I HURT! I BURN! I BLEED! I TEAR! I HATE YOU! I WANT TO KILL YOU! SCREAM SCREAM SCREAM…. Until she felt like screaming back and cutting into the malicious flesh.

Instead she cried, great racking sobs, took the prescribed narcotics, drew the hottest bath she could, stepped in and waited for the screaming to subside, like a voice that has worn itself to a hoarse whisper.

She lay motionless now in the blessed quiet, willing herself to stay still even as the water chilled. But no use. Within an hour the scream would be loud enough to interrupt her life again, make her put aside whatever she was doing to repeat the ritual. Pain pills, hot bath, check out.

Wife of Mitch in MN (age 47) writes:

Thoughts of a Tortured Mind

How do you cope with watching the person you love from your soul suffer day in and day out? How do you leave for work every day carrying with you the fear that the pain will win while you’re gone? I find myself trying to make plans on how to handle things when he’s gone, trying to prepare myself for what feels some days to be the inevitable. My mother became a widow before her 47th birthday. I’m worried that I will do so sooner than that. How are you supposed to stand by while he writhes in pain with tears streaming down his face, knowing that there is nothing you can do? How do you choose between your selfish wishes to achieve your “happily ever after” and his wish to be released from the pain that never ends? When he talks about suicide, is it wrong for you to be torn between screaming, “No, you can’t do that to me!” and breaking into tears and saying, “I understand. How can I help?” I need him, but I need him to be whole and healthy and happy. My happiness would never be complete if it came at the expense of his well-being. How do you deal with his exhaustion and short-temperedness when you don’t even know how to deal with your own? How do you sleep at night knowing that he can’t sleep because of the pain and the panic attacks? Where do you turn to ease your own pain, when you’re the only person to be there for him? What will he do while you’re out pampering yourself? Where would I turn, anyway? And, who will take care of him? He’s got family, but they don’t even try to understand, don’t even act like they care. They’re too absorbed in their own lives to even realize that he’s in trouble. I hate them for their indifference, for not being there for him. God forbid, but if he did choose to take his own life, I would sever contact with them. They will hate me, because I will not bury him. I don’t need a rock in the ground to remember him, or to visit him. That’s their issue. Maybe I would have him cremated and spread his ashes in the sculpture gardens. I have wrestled with the consequences of suicide before. Does that automatically condemn you to hell? Does a loving God have the capacity to understand that the pain just became too much? I love him. I fear for him. I want to hold on to him, but I want to release him to relief. It’s a battle, and I can’t win. It’s not my battle. I have my own demons to wrestle, but they pale in comparison to his. My demons will go away when he finally finds relief. I pray for his health. I pray for his mind. I pray for his soul. I am useless to do much more as I move through every day watching the person I love from my soul suffer day in and day out. I leave for work carrying with me the fear that the pain will win while I am gone. God, please be with him now and always.