Pain and Loss of Self Worth

I am sorry for the pain you are suffering and I understand the frustration with meds. I have been in pain for about 23 years so I know some of what you are going through.

I am 59 years old and I understand chasing severe, severe pain. I fight the pain by meditating my own way listening to music and going to gym. Do I exercise while I'm there- sometimes but being there in my mind. I have a great support group and millions of doctors on board, some of them are clueless. If you ever want to talk text me.

@labgirl hi I am 73 and your story could easily be mine just change some of the details. I have learned slowly and painfully to give up what I can’t do. This is not easy. Here is the way I look at it. My illness is chronic and progressive. My pain is only going to get worse. If I am to have any quality of life, I have to let go of the past. I know this is hard it’s still hard for me. I’ve just learned that I might also lose my sight. This is a rough one. I have always liked to study and learn. When I was younger, I did not have the time or opportunity to do so in a formal way. Now that I am disabled, I can study anything I want, how I want, when I want and enjoy myself without the pressure you usually get in university. Prime video which is free if you subscribe to their delivery service which I do because I can’t get out to buy anything. They recently added an app called great courses of the world. I subscribe to this and find it wonderful it’s geared to those with some higher education add it‘s kind of like 101 courses but also like a survey courses. I am really enjoying learning things every day. I am now studying, quantum mechanics, inorganic chemistry, and how to write in ancient Egyptian just for fun. They have all kinds of courses history, geology just about anything you can think of. I find it really helps to keep my mind busy and active. When I find my mind turning to what I can’t do, which is just about everything. Instead of going down that rabbit hole , which is seemingly endless. What I do is remember I am now free to study or paint or draw or just listen to audiobooks or read or if I’m desperate watch TV. I felt guilty about this at first because I’ve always been so busy. But it sounds like you’ve earned a time to rest and do what you like. So. I imagine I have a new road now and I can drive anywhere I want in my mind.I know this is not the same as what were used to. It does take some time to make all these adjustments. But you can also be happy doing other things, it just might take some time to figure out what is right for you. I hope this helps a little bit. I know the struggle intimately and wouldn’t wish it on anyone. But I’m here to say that it can be done. You can find happiness again.

@scase60 hi and welcome to the group. I am so sorry that you’re experiencing so much pain and frustration. Many of us here are in the same boat together. I think that’s important to know there are others experiencing the same things and sharing some of the strategies we used to keep going. Some days it’s very hard And other days not so bad. I found in my brief time here that listening to other peoples stories and problems is helpful. I am not so alone or isolated. I actually met a couple of people who have the same diagnosis as I do, I have DADS-M. A super rare illness. I wish you happiness and joy in those things you can still do.

I don’t think her comment was religious. She was telling me I had a “victim complex” because she saw me as someone who was feeling sorry for herself. Pretty hurtful, actually.

I have found the loss of self worth was directly induced by the control freak holders of power (aka medical practitioners) and not by the pain itself.
Once I ditched these clowns I felt soo much better 😉🌺
Insults, shame, blame, subversion, gaslighting, bargaining, incessant drug pushing, and invalidation I just don’t have time for anymore.
Now, I just have ‘pain’ - the physical unpleasantness that comes with hideous damage of some sort or other. What I don’t have is the secondary (insert nth degree here) trauma generously dished out by people who have no idea what chronic pain is like besides some abstract concept learned in a seminar/lecture (I say that with a semblance of authority, having been in classes for years at university in allied health, where many of the scientific classes on function and pathophysiology - including pain - were presented).
Unless you can meet me half way with something resembling a useable, practical tool that will actually help me, I don’t have time to entertain irrelevant (to me) ideals of ‘pain management’ - especially when it’s a one size fits all approach (which they don’t even use that term to label clothes anymore, that’s how outdated that particular approach is!)
I use infrared sauna to help, and it does, considering I can’t use hydrotherapy (with diaphragm palsy, water pressure on my body stops me from being able to breathe).
Best thing I ever realised was that in my vulnerable state of pain, I had the mindset of seeking help, which comes with inherent trust attached. This was abused by the system via the power differential held by medical practitioners to manipulate my situation into making me feel like pain was ‘bad’, something to escape at all costs, and needed their help - very damaging and reminded me of little cult leaderships hehe.
I instead have trained myself to manage pain over the last decades, and I’m doing alright (I still have pain that stops me in my tracks, takes my breath away, and drops me to the floor, or wakes me screaming with its intensity, however it doesn’t get the better of me, and I have figured out how to ride that intensity till it settles into something I can function with).
I believe in a higher power, but I don’t hold that higher power responsible for my own handling of what is going on in this earthly sack of bones and flesh. I never ask for the pain to be taken away, just ask that if I’m meant to be here, show me how to use this for all the good reasons 🌺

Thank you for the kind and thoughtful response. I wish you the best with your vision problem. My Mom was blind due to retinitis pigmentosa, so I’ve seen firsthand the devastating effects of vision loss.
She was an incredibly strong woman, though, and made full use of “talking books” for entertainment and to expand her knowledge. This was just before the use of computers was commonplace.
Sending positive thoughts your way~

Hi Everyone, 2nd time posting. To be honest, I have been quickly glancing at my Mayo Clinic email and hitting Delete. BUT... I saw this today and i couldn't believe it. This is exactly what I'm going through right now. For about a week or so I've been so down, spent the last 2 days having crying spells. I look at my dog and I feel so sad because I can't walk him, I used to. I can't drive, I used to. I can't do sooooo many things that I used to. It's coming up on 7 years of being handicapped. I tried adult coloring books. I watched a lot of TV. I know these feelings will go away in time, but I'm so unhappy. If anyone has any ideas about not feeling like a burden or something that can make me have some self worth I am so open to it!! God bless everyone that feels this way!! Much love and prayers to everyone.

inpain247 thank you for sharing, as I think so many of us suffer in silence and unless someone has gone or is going through this they do not understand. I have had chronic pain for 30 years and because I have all my limbs, no bandages or a cast people assume at times there is nothing wrong or it must be in my head. After 30 years a radiologist found my issue although no pain specialist had seen a buildup of calcium on both my fibula's right where the main nerves run down my leg. This nerve was rubbing on what my surgeon said was like a coral reef = so every second of the day the pain was intense and never went away. It was like a very bad toothache 24/7. I never gave up no matter what people said or the doctors who never believed me or pushed me to another doctor as I was a lost cause. I felt like a burden, a loser, and questioned myself but in the end, I never gave up and was vindicated when they found the issue. The pain is now much better but the nerve in my right leg is permanently damaged having rubbed on this build=up for so long but I can do so much more. I have learned to get a second or third doctor's opinion as doctors are just humans and have different perspectives.

If I had this issue 100 years ago, I would have jumped off a cliff because the never-ending pain was not livable. Medicine is improving day by day so never give up. I never thought I would find a solution after 30 years of searching but I did.

I’m happy that you’re feeling better.