My feelings on living with chronic pain

[Dance2live]

I told myself that I was prepared for this life, well aware of the things that I would have to give up or do without. I believed this, and yet when I am presented with the evidence of what I lack due to my disabilities I find all of my intellectual ideas offering poor support to my tired soul. I understood early that I would not find happiness by conventional means, yet I am still struggling to find happiness no matter how I stretch my perception or re-narrate reality. You might be curious why I seem so certain that happiness by the regular means is outside of my boundaries and I will endeavor to explain myself as clearly as possibly. It all comes down to a matter of communication, and the impossibility of another understanding what realm of communication is related to them, and what is related to my personal anguish. I am in pain all of the time, it quite possible that I have been in so long that I can no longer accurately judge its severity. The only measure I really have of its severity is when it incapacitates me, due to the messages in my body over riding my will and physically shutting me down. The connection between this and communication is that I can never be truly alone or present with others because a great part of my awareness is containing this burden, dancing, wrestling, striving, laughing, or crying with it.

When you see me wince at dinner, and shift in my chair it has nothing to do with you, I understand this and I could explain it you but it in the end it does nothing. We as humans are wired to pick up social cues and make sense of reality as it relates to us, and this is an unfortunate corner of reality that cannot be understood unless you live it. I do not say this as a judgement, I barely understand even having lived with it for over twenty years, and I seek to deny its existence whenever I am able. Sometimes I wonder if I have ever truly been without pain, or do I just conceptualize the long distant periods where it was less as the good, joyous days. I call out to god and I pray with sincerity even if it is a futile act, because if there is a god I know that he/she would understand all of my pain and my joy, and know that saddest part of all is the expressions that I never give. I have so much love in my heart, well less these days as I grow accustomed to the dearth of affection, but I am a purist and I cannot stand that I cannot follow the call of soul in being with others. I feel pulled to my soft bed, and my books and movies, anything so compelling that I can drift outside of the prison that is my body. Even writing this, this is not what I want to be writing. I would like to create beautiful and fantastic worlds, full of chaos and mystery and people following the call of theirs hearts. Instead these are the words come that out, not by choice but because the meet the truth of the pain that I am feeling, a feeling that cannot be ignored and demands expression in one form of another. I used to think that by expressing the feelings that I could cure them or let them go, I no longer have that hope and yet they still demand expression.

I have searched for some kind of alchemy that will transform this burden into something wonderful and I have experienced moments of rapture, but always I return to this crushing pressure. I suppose you must be curious what this feeling is, and I am baffled to say that I cannot clearly express it. The clearest I can understand is that through joint coating erosion I feel my bones painfully stacking and sliding against each other, giving warning signs that this structure is danger of collapse. There is no resting position or way to relieve the pressure, sometimes I think it is a wonder that I have not gone a little insane. I feel so clear, and aware all of the time though, no matter how deeply I attempt to intoxicate myself. I believe this is a side effect of pain anchoring me to visceral sense of reality, like a knife cutting through dreams and illusions indiscriminately. So what I guess I am trying to say is that I am not prepared for this, I cannot handle it and I am scared. I want to fall in love, I want to be free, I want to give myself to others and I am afraid it is impossible. How can i live a life where their is no solution and every road leads to pain? Kratom helps, kava helps, alcohol can help, but none of them fixes anything or is even that effective of band-aid. I am not trying to bring anyone down, i just feel that i need to communicate and unfortunately this is all that will come out..

 

[queenscarlet88]

Even though this may not be the story you wish you were writing, the feelings you've described are a rich and chaotic world. Thank you for offering the chance to read about this world. I hope you write more.

 

[Foreigner]

Thanks for sharing. I too suffer from severe chronic pain and I am dependent on multiple medications to manage it.

I too have not yet found the alchemy you speak of to transform the experience of pain into something useful. So far I simply find the pain incapacitating, debilitating, and derailing of all semblance of a normal life. I've had many well-intentioned people try to counsel me past the pain, but you can't just "imagine" your way out of it. It's a stimulus that is non-stop and our stupid, stubborn bodies keep producing it to no end. The most valuable thing I've learned from the experience is that the majority of people don't understand true pain, because their advice is usually so awful.

I wish you well on your journey to figuring this out. My struggle right now is that I deeply resent living in a physical body that cannot turn off its own pain. It's like, THANK YOU, I REALIZE SOMETHING IS WRONG, BUT I CAN'T DO ANYTHING ABOUT IT SO PLEASE STFU. No point in arguing with a meat sack though.

 

[Ziiirp]

Your post is an on-point description of how chronic pain on major body parts can rule ones life, even if you do everything to ignore it.

I too am in chronic pain for years due to a fractured upper spine after an accident, luckily with ups and downs and not just downs, But I expect it to worsen with age, hence family planning, long relationships naturally were erased from my todo list (were never on it, to be honest). Lol I know exactly what you mean, when someone asks : "WTF you cannot sit on that chair, you pussy?" Also I'm not visiting doctors anymore, because in the best case, they basically said : "It won't heal, you have to adjust your lifestyle to minimize the pain". In the worst case they send you to the CT every 2 months and conclude : "Nothing changed, you still are fucked". As long as self medication is possible, I prefer that path instead wasting my time with a stressed out, mediocre educated M.D.

I was somewhat socially difficult before, always had too many friends for my taste. This condition brought the indifference to a whole other level. Chronic pain patients tend to be loners, especially those, who seem not to be obviously disabled on first sight, but indeed are.

The best tipp I can give you : Look out for some physically exhausting hobby if your body allows it. There must be something. If not, invent a new sports, which suits you. Repetitive movements (breathing is the fundamental repetitive movement, which comes to mind) can catalyze a meditative state.

Perhaps it is also a good idea, trying to migrate to a more quite rural environment and become something like a druid. If that also fails, one can still end it all. Perhaps then we are reborn into a world, where every organ/limb/bone can be replaced/enhanced by some bionic invention.

 

[Dance2live]

Thank you to everyone who read and replied I feel less alone

 

[stigma]

Thanks for telling your story. I've had chronic pain for a while now and am starting to loose my mind. Glad I'm not alone.

 

[Cosmic Trigger]

Thank you to everyone who read and replied I feel less alone

I hear you too. I'm in the pain game too. Physical and emotional. I'm so depressed and anxious today. I have my release here and I think of it constantly. My two little dogs are here with me tonight and I'm grateful they are sleeping peacefully and not in pain. I have found a good home for them when I am gone but I just love them so much. I rescued both from a bad place and I have helped them to love life. It's the best thing I have done.

I really hear you. I'm so fucking sad tonight I just can't stop the tears. I'm not just sad for myself. I'm sad for all of you suffering soulful friends here. I wish some peace for us all. I can ask for no more. Take care and thank you for being here with me tonight. It's all I have and I know it's not enough.

 

[AnnaBanana333]

I am sorry you are all in pain. I'm a chronic pain patient as well. We have a group in Other Drugs, where we keep in touch, give each other support, vent and listen. Come join us some time.

 

[DixiChik]

I FEEL YOUR SADNESS and YOUR PAIN. As "hokey" as it may sound, I'm reaching through cyberspace to wrap my arms around each of you and tell you it will be okay. (((HUGS)))

For me, it's a fucking lie...I'll never be okay, but we all need reassurance.

I feel your frustration and your hopelessness. I share your thoughts of incompetent and apathetic "doctors" who allow needless suffering.

I wander into the dark spaces of EXIT, but my inner voice says "not yet".

PLEASE know that none of you are alone. Like Anna said, we have a little community of PAIN PEEPS that gather @ The Pain Management Mega Thread. We joke that it's a club nobody wants to join, but the guest list is LONG! Y'all are welcome to join us. We'll live a candle in the window.