1. < Chronic Pain

Relationship and Expectation Adjustments

Posted by sunnyflower @sunnyflower, Nov 10, 2020

Hello Dear Ones,
I am Sunnyflower.

I learned the following from a two day seminar to teach the church how to minister to the handicapped and suffering. The following was said and came true in my life: 1. 80% of people there were only temporarily well. 2. People tend to distance themselves from afflicted/suffering friends and loved ones b/c they feel more will be required in that relationship. 3. Being with their sick and hurting loved ones reminds them of their own mortality. They can feel very awkward and not know what to say and what to do.

At the same time, it's important for our family and friends to know they must adjust their relationship expectations around our limitations and suffering/pain. Unfortunately, often we must step up and let this need be made known and teach them how/what OUR needs are. It's hard not to build resentment having to do this, feeling they should have the insight into our circumstances and adjust themselves accordingly on their own. In a perfect world this would be the best thing but it's not a perfect world.

I've shared that my 4 kids know I'm ill. They show up every time I'm in the hospital. They know I'm at 1,2,3 and 4 doctor appointments per week including but not limited to diagnostic procedures. They know I'm mostly in bed. They can see I'm in pain when we’re together even though I try to hide it. My husband doesn’t like it that I try to hide it.
I have 18 grandkids who are anti-depressants. My kids know the joy I receive from them. And yet, they RARELY bring them to see me. This pain is indescribable.

My kids have good hearts. I raised them to serve others. And they do. But why are they available to everyone in need but me? Again, this pain is indescribable! They say and write at lengths how much they love me and what a great Grammy and Mom I am. They call and hug me when they see me (except for now b/c of Covid-19).

They know that over the years we've spent a fortune on hiring help. I believe it was last fall but could have been 2018 (my memory is really bad but it was the fall), that my younger daughter told me that she and her older sister were going to come and help me, rotating weeks w/ one another. I was so blessed and told her so!

A month or so later I hadn’t heard anything so I asked her and she alluded to the fact that her older sister had made a comment about not enabling me. I was stunned and beyond hurt so I asked the my younger daughter to come over. I showed her the list of my health conditions that I printed from my Kaiser Permanente Chart. I know that seeing something in writing reaches a different part of the brain and that she would see I wasn’t embellishing my circumstances and, how afflicted I am. Many, many if not most of my many specialists over the years have told me I either have the longest list or one of the longest lists of diseases/conditions they’ve ever seen. There is so much on this list; almost every organ and several glands are diseased. Many of these diseases and conditions are painful in nature.

I told my daughter that I felt she and her sister put me in the position to have to defend my circumstances by their not following through on their offer to help me out and especially b/c of the comment about not enabling me.

Are you sitting down? She said nothing. Not “Oh”, “Wow”, “Sorry”, nothing. That hurt even more. Some time later I addressed her lack of response/empathy/compassion and again, she said nothing.

At least a month or more after that I asked her sister to come over and the exact scenario above was repeated including the same words. This daughter did say something like a quiet “Wow” or on of those words.

To this day they have not come to help me other than my youngest daughter came once for a little while to sort one cupboard of art/crafts for my grandkids. She offered another time by saying she was going to be in my area and had about 20 minutes to come help me if I needed it but it was around dinner time and the kids were with her so I knew nothing would get done.

Let me be very clear. When/if I tell them about myself when they call and ask how I am, I do not complain and often state this is information only, not a complaint. I say this to quite a few people nowadays and then abruptly change the subject to direct the conversation from about me to about them and ask how they and their families are. I am bound and determined not to be negative and not to be a burden.

I saw a therapist for a short time years ago when my poor health demanded that I take an early retirement. She said they may be in denial b/c they don’t want me to be sick. When they see me it reminds them.

I am a very positive and extremely warm, loving person. I am deliberate about being joyful in my circumstances. This is born from the extra amount of faith God has allotted me. I am deeply humbled by the deep, sacrificial, boundless, unmerited love Jesus Christ has bestowed on me. His peace that surpasses all human understanding (Philippians 4:7) is the only thing that gets me through the many fires we all walk through here in this temporary life on earth.
There are many times my pain reaches the human endurance threshold and I am literally fighting for my sanity but I never, ever feel a victim or question God. I know Him intimately enough to trust Him in my circumstances. He has a purpose in suffering. His comfort and ever-presence are indescribable. My heart is so filled w/ gratitude to have this: “faith is the assurance of what we hope for and the certainty of things not seen” (Hebrews 11:1).

I pray a lot for all of you here on the Mayo blogs. I am a part of several groups. I wish you all many blessings and a lot of relief! Warmest wishes, Sunnyflower PS: Sorry for the novel! PSS: Sorry for the repeats!! PSSS: Sorry for leaving so many out here. I named some people just so others can know there is a new discussion. This is based on someone new's story. Thank you!!!!!! @johnbishop @colleenyoung @lorirenee1 @rwinney @jesfactsmon @specialty555 @jessamyn @artscaping @erikas @jenniferhunter @kathleen1314 @jimhd

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

Mentor
Jim, Volunteer Mentor | @jimhd | Nov 14, 2020

There's too much for me to write here about my own relationship troubles, but I'll try to summarize.

I was very healthy until I turned 50. The only medication I took was ibuprofen for shoulder pain from painting houses and other buildings. Two surgeries stopped the pain - cleaning out a calcium deposit, and the other one to remove a bone spur.

After 50, I started feeling off. Gradually I was finding it hard to function, and told my pcp that what was going on could be depression, but I wanted to rule out any possible organic problems. So, I had a bunch of tests and did find a few physical problems and addressed them, and felt better for a while, but by 55, it was obvious that something was wrong in my brain. The doctor had prescribed an antidepressant back when he first started working with me, but I had become extremely depressed and made some unsuccessful suicide attempts. I admitted myself to a safe facility, where I stayed for 6 weeks, 5 weeks longer than usual.

I almost certainly had been mildly depressed for a long time, but when I spiraled down in 2003-'05, it was disabling, and I applied for Social Security disability and was approved with just one request.

My wife has never had a mental health problem, and it was hard - impossible at first - for her to understand. My daughter had been dealing with depression, so she gets it. My son still doesn't get it, and he thinks that I just need to pray more. That may be true, but it's not as simple as that.

I had to retire in 2006, and the move to our current home was a protracted nightmare. It took 31 trips to get all of our stuff moved, 175 miles each way, with my full size pickup and horse trailer, and 2 trips with the biggest UHaul truck. During the packing time, my wife kept finding me curled up in bed, which frustrated and irritated her. Our daughter came to help pack, but none of the many people we knew quite well offered to help. They didn't get it any more than my wife and son.

My wife has the thought in the back of her mind that I might actually commit suicide, and I know it bothers her, even though those attempts were 15 years ago. When I checked out of the safe house, I began seeing a psychiatrist and a counselor. I've been seeing therapists since then, with a couple of breaks for 6 months to a year. The psychiatrist diagnosed me with more than depression - he added anxiety disorder, OCD and PTSD. When I started seeing my current therapist, after one of the breaks, my wife told me that she thought I should have gotten over it by then, and didn't see the need for therapy.

Then, at 61, along came pn. It wasn't bad at first, just some tingling and numbness in my feet and legs. But the pain soon hit, and the search for a treatment began. I think I've frustrated several doctors in the quest because nothing has given me pain relief. A spinal cord stimulator gave me significant relief for a year, then it gradually lost its effectiveness over the course of the second year.

So, that's the background of the difficulties with relationships. Our son lives 2000 miles away, and it's a 10 hour drive to our daughter's, so we see her and her husband and 2 little girls fairly often - they're coming for a week at Thanksgiving.

My wife made the decision 5 years ago not to let my depression control her life, and as to the pain, she's had her share with severe pain in her knees and hip. 2 or 3 years ago I made a conscious decision not to mention my pain to her, and still make an effort only to say something when the pain is at its worst.

Even though she knows the scale of my pain and depression, she doesn't like it that I take medications for the various things, some to keep depression at bay, some for arthritis, some for neuropathic pain and some to treat anxiety and restless leg syndrome. There's a reason for each medication. She'd like me to get off some of them, but mscontin is the only medication that's helped long term reducing my pn pain. Does she want me to lose that and see my pain level go up to 9 or 10? Does she want me to start kicking her every night in my sleep? Does she want me to spiral back down into the dark hole of depression so I'm totally non-functional? I live every day with those questions, and the remarks about how awful my medications are.

More than once I've heard that I should get over it. Not just from my wife, but from other people, as well. That really doesn't help. As for the pain, I should get my focus off it, and think good thoughts, (That was the focus of the pain therapist I saw for 6 sessions.), and if it's not too bad, that actually works. But I don't expect much sympathy.

Not complaining. I try to be attentive to her pain and limitations.

Gotta stop for lunch.

Jim

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 14, 2020
In reply to @jimhd "There's too much for me to write here about my own relationship troubles, but I'll try..." + (show)
@jimhd

There's too much for me to write here about my own relationship troubles, but I'll try to summarize.

I was very healthy until I turned 50. The only medication I took was ibuprofen for shoulder pain from painting houses and other buildings. Two surgeries stopped the pain - cleaning out a calcium deposit, and the other one to remove a bone spur.

After 50, I started feeling off. Gradually I was finding it hard to function, and told my pcp that what was going on could be depression, but I wanted to rule out any possible organic problems. So, I had a bunch of tests and did find a few physical problems and addressed them, and felt better for a while, but by 55, it was obvious that something was wrong in my brain. The doctor had prescribed an antidepressant back when he first started working with me, but I had become extremely depressed and made some unsuccessful suicide attempts. I admitted myself to a safe facility, where I stayed for 6 weeks, 5 weeks longer than usual.

I almost certainly had been mildly depressed for a long time, but when I spiraled down in 2003-'05, it was disabling, and I applied for Social Security disability and was approved with just one request.

My wife has never had a mental health problem, and it was hard - impossible at first - for her to understand. My daughter had been dealing with depression, so she gets it. My son still doesn't get it, and he thinks that I just need to pray more. That may be true, but it's not as simple as that.

I had to retire in 2006, and the move to our current home was a protracted nightmare. It took 31 trips to get all of our stuff moved, 175 miles each way, with my full size pickup and horse trailer, and 2 trips with the biggest UHaul truck. During the packing time, my wife kept finding me curled up in bed, which frustrated and irritated her. Our daughter came to help pack, but none of the many people we knew quite well offered to help. They didn't get it any more than my wife and son.

My wife has the thought in the back of her mind that I might actually commit suicide, and I know it bothers her, even though those attempts were 15 years ago. When I checked out of the safe house, I began seeing a psychiatrist and a counselor. I've been seeing therapists since then, with a couple of breaks for 6 months to a year. The psychiatrist diagnosed me with more than depression - he added anxiety disorder, OCD and PTSD. When I started seeing my current therapist, after one of the breaks, my wife told me that she thought I should have gotten over it by then, and didn't see the need for therapy.

Then, at 61, along came pn. It wasn't bad at first, just some tingling and numbness in my feet and legs. But the pain soon hit, and the search for a treatment began. I think I've frustrated several doctors in the quest because nothing has given me pain relief. A spinal cord stimulator gave me significant relief for a year, then it gradually lost its effectiveness over the course of the second year.

So, that's the background of the difficulties with relationships. Our son lives 2000 miles away, and it's a 10 hour drive to our daughter's, so we see her and her husband and 2 little girls fairly often - they're coming for a week at Thanksgiving.

My wife made the decision 5 years ago not to let my depression control her life, and as to the pain, she's had her share with severe pain in her knees and hip. 2 or 3 years ago I made a conscious decision not to mention my pain to her, and still make an effort only to say something when the pain is at its worst.

Even though she knows the scale of my pain and depression, she doesn't like it that I take medications for the various things, some to keep depression at bay, some for arthritis, some for neuropathic pain and some to treat anxiety and restless leg syndrome. There's a reason for each medication. She'd like me to get off some of them, but mscontin is the only medication that's helped long term reducing my pn pain. Does she want me to lose that and see my pain level go up to 9 or 10? Does she want me to start kicking her every night in my sleep? Does she want me to spiral back down into the dark hole of depression so I'm totally non-functional? I live every day with those questions, and the remarks about how awful my medications are.

More than once I've heard that I should get over it. Not just from my wife, but from other people, as well. That really doesn't help. As for the pain, I should get my focus off it, and think good thoughts, (That was the focus of the pain therapist I saw for 6 sessions.), and if it's not too bad, that actually works. But I don't expect much sympathy.

Not complaining. I try to be attentive to her pain and limitations.

Gotta stop for lunch.

Jim

Jump to this post

Thanks for sharing @jimhd I recently started working with a new psychologist and discovered I also have severe PTSD along with all the other mental and physical issues. My prayers and thoughts are with you.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 16, 2020
In reply to @bustrbrwn22 "Thanks for sharing @jimhd I recently started working with a new psychologist and discovered I also..." + (show)
@bustrbrwn22

Thanks for sharing @jimhd I recently started working with a new psychologist and discovered I also have severe PTSD along with all the other mental and physical issues. My prayers and thoughts are with you.

Jump to this post

@bustrbrwn22 As we navigate through life, and find another piece to the puzzle, like you have done with a diagnosis of severe PTSD, doesn't it feel like a fog lifting? For me, to find out it was not "all in my head" gave me a sense of relief, even knowing there was something else to work on.

Wishing you success in your journey.
Ginger

REPLY
bustrbrwn22 | @bustrbrwn22 | Nov 17, 2020

@gingerw knowing the PTSD has made me a little more conscious of my extreme phobias while they are happening. I am not sure where that might take me but I feel better armed to try and have an even slightly better quality of life.

REPLY
marye2 | @marye2 | Nov 17, 2020

I believe that PTSD is also caused by issues with responses to environment - noise, people and other things. I took my kids through Sensory Integration for ADHD and it really improved coping skills. It is a biological response, and there are movements that do help. The best one of the day was in Houston, but there are other PT/OTs with that experience. I remember it being referred to as a vestibular problem - biking, swinging and other movements requiring balance were beneficial. Alcoholics also may have the issue and are self-medicating to feel more in balance with their lives. In the late 80s, they thought just children benefitted, but it IS useful for adults. Here's one organization: https://occupationaltherapychildren.com.au/we-have-skills/what-is-sensory-integration-therapy/

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 17, 2020
In reply to @marye2 "I believe that PTSD is also caused by issues with responses to environment - noise, people..." + (show)
@marye2

I believe that PTSD is also caused by issues with responses to environment - noise, people and other things. I took my kids through Sensory Integration for ADHD and it really improved coping skills. It is a biological response, and there are movements that do help. The best one of the day was in Houston, but there are other PT/OTs with that experience. I remember it being referred to as a vestibular problem - biking, swinging and other movements requiring balance were beneficial. Alcoholics also may have the issue and are self-medicating to feel more in balance with their lives. In the late 80s, they thought just children benefitted, but it IS useful for adults. Here's one organization: https://occupationaltherapychildren.com.au/we-have-skills/what-is-sensory-integration-therapy/

Jump to this post

@marye2 Thank you for the link. How did you find OT/PT people that do Sensory Integration?
Ginger

REPLY
marye2 | @marye2 | Nov 17, 2020

I called around. My sister had foster kids in it in one state, so I had to call and figure it out that way. In the early 90s, it was an odd thing to do with kids! She had a notebook with the information about it. Google: sensory integration therapy for adults near me

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