Re-Post: What are Your Favorite Anecdotes for Chronic Pain?

Posted by georgescraftjr @georgescraftjr, 1 day ago

In a recent post, I forgot to ask a question ("What are Your Favorite Anecdotes for Chronic Pain?", when I wrote that empathy, awe, gratitude and humor are my favorite anecdotes for pain:

"I recently read a post by "@loriesco" who wrote: "I’m not sure what pain teaches us. I read your post three times over the morning maybe before. I want to say I am sorry and I empathize with the many abuse and discrimination you suffered. I also experience the same. I am not sure that I tie my pain to my childhood traumas." In response to these comments, my point is not that chronic pain is tethered to past traumatic experiences. My point is that my experiences have taught me empathy--and empathy is one of the best anecdotes for chronic pain.

Whenever I've had an especially rough night, I turn to this "community" first thing in the morning. I empathize with all of you who have health challenges, who care for someone with health issues, or both; and I especially empathize with those of you who have to deal with chronic pain since it is now in the driver's seat of my husband's life (his Alzheimer's, Lewy Body dementia, vascular dementia and Parkinson's are mere passengers).

Awe is another anectdode for pain. As a spouse of a chronic pain sufferer and as one myself, I am in awe of all of you who share your stories through Mayo Clinic Support. Chronic pain dulls our sense of being fully alive, and dealing with chronic pain is exhausting. Awe for all of you, however, stirs my soul and reawakens me to the flow of life. For that, I am grateful.

Gratitude is especially uplifting. I try to be thankful for all things great or small. That way, I don't have to dig myself out of a pit full of self-pity. (To deal with chronic pain, I swim whenever I can; and since I have recently been having back and leg issues, I am grateful whenever I am able to get in and out of the pool. And I am even more grateful for having access to a warm shower or a hot bath after my swim--especially since many people don't have that luxury.)

Humor is as also uplifting. On many days, it's hard to laugh let alone smile because pain is a cold-hearted killer. So, when all else fails, just scream and yell in between swearing up a storm. Extremely cathartic."

Since my husband's struggle with chronic pain rose another notch last week (we upped his buccal film dosage from 600 mcg to 750 mcg), and my own battle of pain has been debilitating, I would love to hear your stories.

George's Wife

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for jackiet @jackiet

@loriesco Thanks again for the info. I’m also curious about the roxycodone because it’s in my insurance formulary. So I’m going to ask about it.

Jump to this post

@jackiet I am going to ask too!

REPLY
Profile picture for jackiet @jackiet

@loriesco Oh dear. I understand and empathize what happened to you. But guess what? I will be 90 years old in April. Think I had better to stick to the minimally invasive stuff. I didn't experience difficulty in standing and walking until about 3 years ago. In March 2023 I was still walking around all over Paris. Can't do that any more. But am blessed for being able to do it for so long.

Jump to this post

@jackiet yes one’s age and condition (like heart strength) can make a difference. And the ability to work the muscles so recovery can happen. We have to be real about these things. I guess life teaches us that we have to be able to move into different things. For me change was never easy. It just comes faster as time goes quicker. Acceptance may be the key. I noticed I really enjoy TCM old movies from the 20s and 30s now. Caught one with Marlene Dietrich last night playing Catherine the great. I certainly enjoyed putting the easy chair up and indulging myself watching the entire movie without moving! What amazing costumes she had! Yes, complete distraction and total enjoyment of the moment. When I was younger, I would’ve never given myself that privilege!

REPLY
Profile picture for loriesco @loriesco

@jackiet yes one’s age and condition (like heart strength) can make a difference. And the ability to work the muscles so recovery can happen. We have to be real about these things. I guess life teaches us that we have to be able to move into different things. For me change was never easy. It just comes faster as time goes quicker. Acceptance may be the key. I noticed I really enjoy TCM old movies from the 20s and 30s now. Caught one with Marlene Dietrich last night playing Catherine the great. I certainly enjoyed putting the easy chair up and indulging myself watching the entire movie without moving! What amazing costumes she had! Yes, complete distraction and total enjoyment of the moment. When I was younger, I would’ve never given myself that privilege!

Jump to this post

@loriesco

Thanks for sharing the vignette of how you spent last evening, Lovely.

...and thanks for sharing your wisdom: Life is more manageable when we are willing to accept change" and more pleasurable when we change our perspective and expectations. This is especially true for someone like my husband, George, who has become cognitively impaired.

Instead of viewing "total enjoyment of the moment" as "doing nothing," we need to give ourselves permission to be "complete[ly] distract[ed]" by whatever. Most days, George is extremely distraught, and he asks me throughout the day: "What should I do?" "What should I do?" His illness has rendered him helpless, and he feels completely useless and without purpose.

I try to reassure George that his life is still valuable, and that he doesn't have to "do" anything. (He already raised five children alone, after his first wife died of cancer; and he had a successful career as a college professor.) I tell him that he needs to enjoy the "privilege," as @aloriesco wrote, to just "be in the moment." And I tell him that our lives still have purpose despite the changes in our physical and mental health: We can continue to love and to be loved--and to find new forms of enjoyment. (For example, last evening, I massaged his sore legs and feet by the fireplace, while listening to his favorite: classical music. Then we migrated to our desk top computer, and I played videos of something else he enjoys: military marches.)

Love,
George's Wife

REPLY
Profile picture for jackiet @jackiet

@bilt4pain I apologize for getting off the proposed subject. And empathize with you 100%.

Jump to this post

@jackiet no worries, stories lead to other stories. It’s a comfort knowing others can truly empathize with a life like this. ❤️

REPLY
Profile picture for loriesco @loriesco

Hi George’s wife, I wanted to mention anti-anxiety medication’s for your husband. I have witnessed instances of giving patients diazepam (Valium) or Ativan when painting intensifies as a caregiver. I had my own experience once in the hospital when they replaced my hip and I had incredible pain. I think it was in my knee. they refused to give me more opioid. It wasn’t that much opioid. I was on one of those machines where you push the button and I think they had just taken me off of it, I had a meltdown. I asked them to bring me a phone and I called the doctor and swore at him because I was in such incredible pain. ( The hospital told me that would only give me more pain medicine if the doctor approved; so I told them to bring me a phone and I called the doctor!) the doctor didn’t like that so much so then the head nurse of the hospital came to see me and prescribed me a very low dose of Valium. immediately it controlled the pain! I was very comfortable after that. it was a wonderfully kept secret. I don’t know why they hide things like that. I was probably more out of control with anxiety and suffering and by getting control of the anxiety I could control the pain.. I hope that idea might help your husband. I also witnessed it when both my mother and my father were in hospice and their pain levels caused them to suffer terribly. Controlling suffering with anti-anxiety medicine really helped.
Pain is a difficult thing under any circumstance, and chronic pain really destroys the quality of any life. All the things that you spoke about the empathy, the gratitude, awe, et al, those help me with my emotional pain. They are wonderful tactics I use when down in the dumpster, but it does not seem to phase my chronic pain.
I can’t remember who recommended the books about mind over matter with Dr. Sarno (and his follow up) but the problem for me is that I can’t do anything else while I’m focusing on mind over matter to get rid of my pain. So I really appreciate the opioid which does the same thing, but allows me to function while it removes the pain. I was talking about this with my doctor yesterday about how the pain felt in my brain it is relatively real, I have isolated the pain mostlyto my nerves, nerve sheaths, and my muscle fascia sheaths. They seem to be the network which transports the sensation of pain from the area which is aggravated, to my brain. The opioid interrupts the pain signal in my brain.
There is some pain for which this would not be a good idea. Pain is there to send us a message to change something. It needs to be heard and it needs to be acted on. However, there is some pain for which the medical industry provides no assistance and which just needs to be quieted.
I am grateful that I have a happy medium. You asked about antidotes: anything creative takes my mind away from where I don’t wanna be. working on my ancestry, cooking, painting, taking a slow walk, reading a good book not just a good book — an engaging book – anything that is so incredibly absorbing that I am 100% engaged. Maybe you could sit down and make yourself a list. Kind of like a bucket list, but not things you wanna do before you die things that are so engaging that you lose track of time and reality. I also love heat. I love my heating pad I love my little sauna. I love to kick the thermostat up and wrap myself in blankets with my dog (who absolutely hates being warm, lol). I love shiny objects or lights. I could sit and stare at the Christmas tree all night long. I can put on my favorite music mix and shut my eyes and get rid of my body.
I believe we are spiritual beings having a physical experience. If you can focus on being light like air and remove your head, your consciousness, or your awareness from your body, you may be able to interrupt the pain signals.. If you can focus on being light like air and remove your head or your consciousness or your awareness from your body, you may be able to interrupt the pain signals. Sounds like you may wish to do this without medicine. For me, I have no desire to suffer and I just want the pain signals to be gone without doing any damage to my body. medicine works just fine along with my doctors support.
Take care George’s wife, and get rest when you can. I find that pain is exacerbated when I am not well rested. Maybe you need a caregiver as well. If you use the next-door app and you are very careful, you can find some nice people that will come to friend you and give you a little respite. I see people helping each other all the time there! Good luck

Jump to this post

@loriesco just what I needed to hear today! When all else fails, I turn inside, to blank my mind and drift to a different realm of consciousness that has no body. I feel like I have one foot in heaven when I can achieve that state of consciousness.

REPLY
Please sign in or register to post a reply.