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Peripheral Neuropathy & Conversation Fatigue?
Hello, all!
The other day, a friend accused me of talking too much about ‘medical stuff.’ (In my defense, I have not only peripheral neuropathy but also the residue of a bad sepsis infection.) My friend smiled as she ‘accused’ me, and I tried not to let what she said get to me. But it did. It bothered me the rest of that day and has trickled into my journal writing every day since.
I boast of not being one who goes on and on about his ‘medical stuff,’ even saying how much it wearies me when someone else goes on and on about their ‘medical stuff.’ (I say this, and yet I recognize––and have written so in my journal––that when people undergoing a common experience have a chance to talk, there is a measure of satisfaction in talking about that shared experience.) I don’t want to be someone who goes on and on (or shows impatience to others who do) because I don’t want to ‘bore’ my friends.
Some might say (and rightly so), ‘A true friend will never be bored!’ I agree.
But in my mind, there is a point where enough becomes enough.
Some months ago, I posted a piece I called ‘One-Trick Pony.’ I have never wanted to become a one-trick pony: a fellow who talks so much about what ails him that he BECOMES what ails him in the privacy of his friends’ minds.
I have peripheral neuropathy, yes––but I am NOT my peripheral neuropathy. I have a few leftover symptoms of a sepsis infection, yes––but I am NOT my leftover symptoms. I am a bundle of many things besides my diseases. (Oh please, I hope I am! :-))
Have others of you wrestled with this issue: Needing to find okay times to talk about what hurts you, but also never wanting to overdo it?
Ray (@ray666)
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Amen to that! 😂
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2 ReactionsDebbie - I can personally guarantee you that Mayo can't fix all things....I am proof of that. When I went to Mayo in Feb 2020, I did see two neurologists in MN who told me what I have but no idea why. These two neuro docs specialize in PN. Of course, that is my case, and not all cases are the same. I went through a number of tests that 3 other teaching hospitals never did. You are right, not all illnesses have a reason, answer or a cure. We with PN know that well.
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6 Reactionshi ray--A bit of comic relief relieves me and most everyone else, If I find myself launching the latest episode of a PN saga, I might stop abruptly, tilt up my chain, pass the back of my right hand ever so gently across my forehead, and say, in the style of a distressed Southern belle, "But please, people: Let's don't talk about me..." As I would never be mistaken for a distressed Southern belle, this draws some laughs while gently conveying the notion that I'm feeling like hell. It doesn't afford the satisfaction of reciting a full-blown resume but it beat suffering in silence.
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6 ReactionsHi, chawk (@chawk)
As poet Wendell Berry says,
Our lives, half gone,
stay full of laughter.
I get twice the laugh out of those lines. MY life "half gone"? Really? Only half? That must mean I'm going to live to 160. (I'd better alert Medicare.)
Cheers!
Ray (@ray666)
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3 ReactionsI started loosing my friends in 2002 when I had mrsa bacterial spinal meningitis. I had a Picc line for three months and pills for another three months. Lost short term memory and could not remember co workers during this time diagnosed with autoimmune severe axonal sensorimotor peripheral polyneuropathy and small fiber neuropathy. For a long time people would approach me at work and I did not know them it was very awkward since they knew so much about me. I lost so many friends because I can’t walk a mall or go shopping 2010 three left hip surgeries hip fractured actebulum and hip dislocated all on the left side. So I can’t do stairs can’t get up a curb people just fell away. I did not talk about what I was going through mentally and it took me a year and a half to re be able to walk after the fracture. Now both my hips are so inflamed I get injections every six months. This has severely affected my back. I used to love to swim but I have a hard time way too much metal on the left side so it sinks. My best friend died three years ago of MS. We both had so much in common to me neuropathy has a lot of the symptoms of MS. Since she passed away in a car wreck really have not made any new friends. Recently fell broke three ribs and fractured my back and it’s sliding in and out of place. Going to see my neurosurgeon for mris to see what’s happening. I am only 62 the doctor talked to me about becoming wheelchair bound. I am not ready for this. My drivers license has been taken away since I can’t feel my feet. It’s hard to go anywhere when you can’t drive.
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5 ReactionsWhat to do when there are no friends your age?
I do think that over 80, you rarely escape without some kind of ailment. Of course, it depends on how debilitating it is. You cannot act like all is smooth if you are "walking funny" or have an injury that you can't cover up.
I know attitude is BIG, RESPONSE is huge, but I need some pointers. i.e.
So, say someone stops in. First thing out of their mouth is "How're you doin'?" (or similar)
Do you say "fine?" Do you say, "You don't have time for it all?" Do you say, "This and that?"
It probably depends on how close the friend is, but I don't want to say I am OK when I feel terrible... but it does not show. I have pain all the time in some way or another. Tell me a good answer without a big lie, that is different than "Doing the Best I Can." Any ideas? I just turned 90, have PN arthritis, sciatica, constant headache,
but none of that shows. Some new ideas or suggestions are needed for a decent response to "How are you?"
All ideas will be welcomed! Thanks!
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4 ReactionsIt seems the response that I’ve been settling into over time is “I have good days and bad days, and today is going xxxx”. I usually put something positive in to some degree: ok, not too bad, pretty well, or really great! So I’m being positive but not trying to give them some false impression that everything is good all the time or that I’m getting better, and at the same time hoping we move on to the next subject so I don’t become one of those friends who become depressing or irritable to be around because I’m always talking about bad health. I think very few people really want to hear it and they can’t understand what we’re going through.
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6 ReactionsI like your response better than my go to when someone asks me - "Finer than frog's hair, split two ways" 🙃 I do think negativity has a way to send you down a dark hole and I definitely don't want to go there.
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3 ReactionsJohn - I wish there was a laugh button. I would walk away from you and pull out my phone and ask Siri if frogs have hair 🐸
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2 Reactions😂🤣😂 I learned the phrase from an old friend and also learned a few variants along the way so you can change it up.
https://www.phrases.org.uk/meanings/fine-as-frog-hair.html
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2 Reactions