How to deal with constant pain for years

Posted by kathyclickner53 @kathyclickner53, Apr 22 11:20pm

I have dealt with severe pain for years it’s hard to do things I used to do pain in my hands my back. My eyes legs I take pain meds tynol I use cream patches. I have been kinda discouraged lately I keep hoping soon i could be delivered of pain I have to depend on walkers canes wheelchair I loose my balance a lot this pain has changed my ability to work visit go places It’s been very discouraging.

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BeBold | @bebold | May 19 9:34am

I measure against myself only. I'm glad I was chosen for this difficult live because I was the better choice. I don't have children to raise. I am only responsible for myself. I have a high pain tolerance and by now a higher distress tolerance than many average folk - like most of us here. I don't love my life by a long shot but I'm content with less. Many would be more miserable than I. I don't wish this on anyone but I try to be optimistic sometimes and at least feel I was the right person for this if someone had to get it.

Feels like crazy thinking but I can't negate my feelings by telling myself others are worse. Negating our feelings is a world crushing depression into my life.

I think its ok to mad to have no shoes when others have no legs. I don't think its ok to complain they aren't gold or spend $1,000 to have someone elses name on them.

Its ok to use sadness and anger to cope. My problem is I've run out of "cope."

I read the words "constant pain" in the title and it soothes me. Because so very few understand that people actually DO live in constant pain. For some, its just inconceivable. I must be exaggerating! So I read here I'm not alone. My pain is valid because YES, it is possible to live in constant pain. This is year 45 of constant pain and I've let myself, for the first time in my life, be out of the closet about pain.

Self validating rather than always questioning if I'm just a big baby. Mayne its not real. How can anyone REALLY be in constant pain? When I know people dont believe ne, I question if its real either.

This year I've actually said out loud "every second, of every minute, of every day for FORTY FIVE years, I've been in pain."

Yes, be, its real and I'm not asking for pitty, I want people affected by that sentence tho. It helps us all to be recognized and people to say "wow" and let that sink in. I've put myself so deep in the pain closet, nobody in my life knows except my therapist. So when I say I can't come to your bday party, you might think I'm making an excuse because they have no idea. I've not done myself any favors. I'm coming out. I'm in constant pain. Yes its real. But please make me part of your life even if I can't come sometimes.

I think me validating constant pain helps me and lets people see me and feels brave to say weirdly but we all spend so much of our energy protecting people from our pain. I did it yesterday. I don't want my family who all live 1000 miles away to feel bad they can't help when they ask hiw they can, and they could actually, I just
dont tell them how. " (send money so I can hire a house keeper to help with laundry, dishes...)

They have the means and gladly would but can't let myself ask. I don't want to live anymore but oh, don't worry about me, I'm fine."

Its complicated isn't it?

Meanwhile I got my sheets changed last night. Was good.

rmshackelton | @rmshackelton | May 19 10:02am

I have had pain severe from CRPS for over 20 years now. IT is so bad sometimes I cannot stand it. I have found some gummies that are from a company called Verano and they MUST say on it RSO and Hybrid on them. These really work for pain and especially at night when my pain gets worse. If you are in a state with cannabis is legal I suggest you try a package. It has helped me get 6-8 hrs. sleep without waking up. I have not had this much rest at night for so long!!! Extremely happy someone told me about them. Gentle hugs

Rachel, Volunteer Mentor | @rwinney | May 19 10:31am

In reply to @bebold "I measure against myself only. I'm glad I was chosen for this difficult live because I..." + (show)

@bebold

Feels like crazy thinking but I can't negate my feelings by telling myself others are worse. Negating our feelings is a world crushing depression into my life.

I think its ok to mad to have no shoes when others have no legs. I don't think its ok to complain they aren't gold or spend $1,000 to have someone elses name on them.

Its ok to use sadness and anger to cope. My problem is I've run out of "cope."

This year I've actually said out loud "every second, of every minute, of every day for FORTY FIVE years, I've been in pain."

They have the means and gladly would but can't let myself ask. I don't want to live anymore but oh, don't worry about me, I'm fine."

Its complicated isn't it?

Meanwhile I got my sheets changed last night. Was good.

Jump to this post

It is very complicated! Thank you for articulating your feelings because they will help others, including myself.

You are brave and I admire your obvious work with a therapist. You definitely are coping, more than you realize or maybe give yourself credit for.

Two words really stuck out to me in what you wrote:
Optimistic
Self-validating

Congrats on working towards a level of acceptance and sharing yourself on Connect. I see you!

menetski4 | @menetski4 | May 19 11:51am

I felt the same as you at one time but Pain Reprocessing Therapy has helped me tremendously. Check out the work of Dr Howard Schubiner and others. Can’t hurt and may have remarkable results. Just believe in yourself.

BeBold | @bebold | May 19 12:54pm

In reply to @rwinney "It is very complicated! Thank you for articulating your feelings because they will help others, including..." + (show)

I read this once.
Intimacy - Into Me See.

thanks. Writing here and other places has been good for me. I appreciate the space to drag myself out of myself. Appreciating that my coping skills are not at peak right now has in a way given myself the "right" to wallow a tad - and not force myself onto someone else's timeline. I've never let the word "cope" be part of my vocabulary.

Another word I have never let myself see is "respectful." towards me. I don't place that word as if I deserve to be the recipient and therapy has helped with that as far as living with a chronic illness. We deserve to be respected by doctors, professionals, parents, friends.... And I never knew what I was feeling was disrespected. OH. hmm. I'm starting to see. I told her a story about something my mom did to my dad when he was dying and her instant response was "wow, that was so disrespectful of her." And I felt slapped in the face with that word. She was right. It felt yucky and seeing drs who don't listen feel yucky but it's actually being disrespectful. I wonder what would happen if in the middle of an appt, and feeling blow of and not listened to if we said to the dr. "I am feeling very disrespected right now and I deserve the respect i give to you to be given back."

hmmm. I come up with good things when I write. I may try that.
We all deserve respect but when you are seens as just a PIA "chronic" (I despise that word as it seems to be about our personality as well. It's a negative energy word that describes more than just our illness. it's used against our psyche and makes us feel like a throw away person. I've said a lot of my life I have felt like a throw away person. That's from being "chronically ill" since I was 23. And you know, we deserve respect. It's time for us, well for me! to see that blow off as disrespect by our doctors. I wonder what their response would be. I can't imagine that it wouldn't make a dr. shush and listen. And if not, that's about them, not about us and their feelings of us being a child PIA when really I'm a 69 yo woman...Yeah, We deserve respect. It's time to claim it maybe.
OK. again, space to flow my mind and empty out and maybe get someplace to de-depressioning and self-advocacy in a different way. Hooo Ha. self-respect and respect. demand it. thank you.

covidstinks2023 | @covidstinks2023 | May 19 4:20pm

In reply to @bebold "I measure against myself only. I'm glad I was chosen for this difficult live because I..." + (show)

@bebold

Feels like crazy thinking but I can't negate my feelings by telling myself others are worse. Negating our feelings is a world crushing depression into my life.

I think its ok to mad to have no shoes when others have no legs. I don't think its ok to complain they aren't gold or spend $1,000 to have someone elses name on them.

Its ok to use sadness and anger to cope. My problem is I've run out of "cope."

This year I've actually said out loud "every second, of every minute, of every day for FORTY FIVE years, I've been in pain."

They have the means and gladly would but can't let myself ask. I don't want to live anymore but oh, don't worry about me, I'm fine."

Its complicated isn't it?

Meanwhile I got my sheets changed last night. Was good.

Jump to this post

God Bless You! There is great comfort in saying to others that care, how we feel. It is a release and almost always you will get positive feedback on here from others that are hurting.

You are a brave soul. I am so sorry that you have been in constant pain for so many years.

It's so hard to explain to others that you are in constant pain or are tired all the time from the pain. Actually, explaining your ailments all the time is tiring I find. I journal a lot and pray and have 3 close friends I can share with. I hope you have at least 1 close friend to share your heart with. Yes, my friend, it is complicated.

I'm not going into my "pain" because this is your time to share and I admire your honesty and you are a very strong individual that pushes forward by doing "the next thing"....like changing the sheets.

I am praying for you. I empathize with you and I care. Please keep me posted.

BeBold | @bebold | May 19 7:29pm

In reply to @covidstinks2023 "God Bless You! There is great comfort in saying to others that care, how we feel...." + (show)

Please, share away. Everything I read here helps me too. Even if I don't agree! Food for thought keeps me humble. Let er rip. Don't deny us your wisdom. Pitting it into words has been helpful this week.

I have friends but not a large inner circle. And ibe keep the fact that I have pain even from my inner circle. I was invisibly disabled when I moved here 17 years ago. A knee replacement took me out of remission of crps. I just didnt leave the house if I need crutches. Most of my inner circle are disabled so we can't help each other but even they can't conceive of constant psin. I must be exaggerating.

I don't feel brave. Thus week I've been ready to leave earth. I've barely unlocked my door in 2 weeks.

I live in North Carolina and they're about to pass a law that wearing masks in public for any reason including medical is illegal!!! Imagine. Disabled people can be arrested for wearing a medical mask during a pandemic. What happened to my country that understood science? Imagine.
He ended up in Walking the other night and the doctor had on a mask and I told her what they were doing with laws and she said she knew and then she wasn't taking your mask off and they could just arrest her. Lol insanity outside my door and inside my head. So I'm just working really hard to stay any kind of balanced I am not brave believe me. But thank you for the vote of confidence. Lol

lisebeau | @lisebeau | May 20 5:59am

In reply to @heisenberg34 "Nothing. God’s Word tells us that the rain falls both on the just and the unjust...." + (show)

I totaly agree, I have been getting ECT treatments. and for at least a month now i have extreme pain in my legs and feet. I didnt have this before the ect.I am wondering if it is neropothy

heisenberg34 | @heisenberg34 | May 20 6:24am

In reply to @lisebeau "I totaly agree, I have been getting ECT treatments. and for at least a month now..." + (show)

I am beginning to think that neuropathy is a catch-all term when they don't know the cause of your pain. "Pain in your...? Oh, sounds like neuropathy. Nerve damage of some kind". I've heard people talk about neuropathy with pain and without pain. Very confusing.

dlydailyhope | @dlydailyhope | May 20 7:35am

In reply to @bebold "I measure against myself only. I'm glad I was chosen for this difficult live because I..." + (show)

@bebold

Feels like crazy thinking but I can't negate my feelings by telling myself others are worse. Negating our feelings is a world crushing depression into my life.

I think its ok to mad to have no shoes when others have no legs. I don't think its ok to complain they aren't gold or spend $1,000 to have someone elses name on them.

Its ok to use sadness and anger to cope. My problem is I've run out of "cope."

This year I've actually said out loud "every second, of every minute, of every day for FORTY FIVE years, I've been in pain."

They have the means and gladly would but can't let myself ask. I don't want to live anymore but oh, don't worry about me, I'm fine."

Its complicated isn't it?

Meanwhile I got my sheets changed last night. Was good.

Jump to this post

@bebold
I so feel everything you said and you are not alone! Some days I want to scream out loud “I am not Okay!” because it is hard for people to empathize with pain if they are not experiencing it because it is invisible to them. I also focus on the small, simple things since I am very limited. I am 54 and a single parent of a 14 year old son. He gives me a purpose to push myself through the pain. I lost my job and unable to work now. Hard to afford health insurance and not sure if I will get approved for disability. I am just taking one day at a time and asking God to give me His strength because I am hanging on by a thread most days.

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