Me & my PN: Why do I lie?

@ray666 Ray - Hurray for you, I hope you manage to follow through. I don't have PN, but I do have chronic pain from a variety of issues, and bad lungs that can cause low energy.
I'm not a guy, but I was taught growing up not to complain - just keep going. And boy have I tried! In 2020, after 2 years of treating a bad lung infection with a horrible course of antibiotics, and feelin much more pain for having become a couch potato, I finally was honest with my PCP of many years. "I can't live like this any more." Best thing I ever did! I entered a pain rehab program, learned a ton about pain and living with it...and learned to be honest about it. I'm back in the program, getting a tune-up, if you will, and learning even more tools for living well. Even better, I convinced my husband he needed to give it a shot - and he is getting back to being the retirement partner I love, we're back to weekly tiny adventures, and planning the next phase with the new camper we will pick up later this summer.
I wish you luck - and help in living better with your PN!
Sue

Hi Ray- always enjoy your posts. I’m going to take you to task about “lying” to your partner. She’s no dummy, she can see right in front of her eyes how you navigate down the hall, do the steps, walk on a sidewalk. She has a front row seat to your balance decline. She also knows, as we all do, that there are no guarantees with life. We could be hit by a truck tomorrow and need caregiving from our loved one. Same goes for bucket lists. I’m visiting an old friend in Montana next week and have had to tell her we need to cross off riding the rapids- just can’t physically access that activity.
It is great that you are committing to PT. I do my home program every day but Sunday, do the PT exercises, walk 1 mile with an AFO, and ride an exercycle 15 minutes. Last year I got disgusted with everything and went on strike for 2 months- big mistake- I lost a lot of strength and endurance.
Doctors (and partners) like data- think how you will describe the worsening of your balance- near falls? now needing to take steps one at a time? navigating through the house with a light touch on furniture as you go by?
It’s also important to start thinking about your living situation given the balance issue may get worse. Can you live all on your first floor? Or do you need to think about a StairGlide? Do the steps into the house have railings? Are there railings vertically at the entrance to the tub/shower and one horizontally inside? Throw rugs up? Non-skid socks or slippers on?
Lastly, I had to laugh at your “lies” about drinking. An addiction counselor friend told me once that alcoholics lie about quantity as they don’t want you to know how bad it is, drug addicts lie about quantity because they want you to recommend the highest amount of the medication chosen to wean them off whatever they’re taking.
Give your partner a hug! Life goes on. When asked how I’m doing, I say “I’m walking, I’m talking, it’s a beautiful day”, makes people laugh and best of all, it’s true! And you never know, thinking about that response may lighten someone else’s load.

Ray thank you for posting about this. It certainly struck a nerve, or many as we say in our PN community. I am 73 and been symptomatic with PN for 2+ years. And I have told virtually no one about it. Physically from the outside, there isn’t a lot of to see except for some red feet. But internally, I struggle everyday and my confidence is shattered. I never know, as others have said, whether I’ll have a day with low droning tingling feet, or a day where I’ll want to cut my feet off because of throbbing pain and burning. No consistent triggers and no consistent pain remedies.
This isn’t how I visualized aging. Who does? I have still many family members dependent on me and I don’t want to cause them additional anxiety with questions about my future. This isn’t my first rodeo. I once went to a psychiatrist to process an extremely rare migraine variant that I still experience. I just don’t want to talk about it.
As for my Dr. , we speak to a point. She is a very well known neurologist who specializes in research and clinical management of PN. She sees me as a lucky patient with slow progression. And she is right I am sure. But there are a lot of days I sure don’t feel lucky.
So what will it take to make me come clean with my family, husband and children? At the very least, it might be nice to have some understanding that chronic pain might make me angry and depressed, some days more than others. To not be hiding my pain based sleep deprivation which makes all of the previous worse.
So what will it take? I don’t know. But Ray you have certainly given me something to think about.

I guess we all probably grew up thinking it was unflattering or impolite for “old” people to always be so negative and ramble on and on about all of their health issues, so we have learned to sugarcoat it or brush it over it. Thankfully we have this forum to vent and share concerns, with people with experience and solutions!
Keep your positive goals that are obviously to the benefit of your quality of life (and your partner’s). As for doctors, I think they’ve learned to take what we tell them and factor in a hedge for what they think is exaggerated based on some statistics handed down to them along the way in med school that they apply uniformly to every patient unless there’s a scientific way to measure it. So if you really exercise 1 hr a day, they think it’s a half truth and think you get 30 minutes; so we might tell them 2 hrs a day in hopes they believe the true 1 hr we’re getting. Alcohol is the opposite - if you tell them 2 a day they equate that to really mean 4, so if we really want them to understand it is TWO, we scratch our heads and wonder if we should tell them 1 since they’re going to factor it up to 2 based on average “truth telling”. Quite sad on both sides when trying to get the truth understood. I have a true story: I’d always reported no alcohol for years, and no drugs ever, but after being discharged from a hospital for surgery a couple of years ago, I saw labs that had tested me for current and long term alcohol and drug use/abuse! While I was initially offended that my reported words were obviously not believed, I did feel the gratification that my urine and blood apparently proved it.
I feel for your pride, and appreciate your posts and honesty. I have accepted that I won’t get better, but am fighting hard to maintain what I have! But my peeve? It’s when I hear my spouse talk when someone asks him how I’m doing, and I hear him say “Oh she’s great! She’s getting better and better!” Makes me boil a bit inside. Maybe I should tell him half-truths so he’ll understand I’m only maintaining, not improving 😊. I do hide my pain from him as much as I can, but am lucky how Gabapentin had made it tolerable for me to do so. Maybe he means my acceptance, coping, and attitude… because with the help of this group, it has improved!

This is such an interesting and timely discussion. I divorced five years ago after 30 years of marriage, and my sons live hundreds of miles away, so I live alone. That means no one sees how bad I feel. My SFN involves pain, weakness and fatigue. My friends know that I can’t join them for a 2 mile walk, or a day of shopping. But no one offers to help me with my gardening, for example ( even my gardening friends). Here in the South lots of us enjoy lovely yards and flower beds. This summer I am having trouble maintaining mine, and mowing my grass, but no one offers to help. Our friendship is based more on fun things, like days at the pool, going to outdoor concerts and picnics, and shopping trips to nearby cities. I have talked about my pain, and weakness, etc for the past few years, but since I don’t look any different, and have dropped out very gradually, it hasn’t made a big impact on them.
Well, there is a new wrinkle here. My long-time complex partial seizures have returned. Gradually at first, but now it’s a daily occurrence. The post-seizure stage of confusion, dizziness and sometimes double vision is lasting longer each time. My daily seizure is a few hours after I get up, then I’m home bound for most of the day. Well, seeing me like this has changed everything. I think the word seizure is scarier and more real than neuropathy.
When or if your friends and families see you using adaptive devices, which you may need some days but don’t use (thats’s me and the cane) it’s harder to ignore the changes. I’m pretty good at finding a chair while others are standing. That’s not very noticeable. Asking your friends to let you out at the door in stores and restaurants, when you used to walk two miles with them for exercise, is hard to ignore.
I hate that it took seizures for my friends to take my illness seriously, but this week I have gotten cards, flowers, food and rides. Maybe I’m the first in our group ( age 60’s) to force everyone to face their own inevitable aging and possible crippling illnesses?

I, too, have sugar-coated both severe pain and neuropathy due to a spinal condition. I'm up front with my doctor and husband, but not with anyone else. I don't see the point........there is nothing that others can do and when I'm with friends I want to focus on them, not me.
I wonder what the best approach is? Share or not?

@ray666 - Ray, you have to be honest with yourself first. Start admitting to yourself the fact that the PN isn't going away and here is what a neuro doc told me a few years ago....you won't die from it, you will die with it and oh boy....that has stuck in my mind for years. The point? He was laying it on the line about as straight forward as he could be, and I too do the same with my family and friends and those I work with. Last week, friends came to visit us in NJ from New England and before they came, I brought them up to date with my condition. They said thanks for letting us know and we'll do things you can do. It worked out well. I agree with @centre. Your partner knows what's going on so. You'll feel better when you are willing to accept what is happening and in turn, I think you'll then find yourself honest with others in your life. Wish you the best!! Ed

Hi, Ed (@njed)

As always, you've whacked the nail on the head! I didn't exactly get around last evening to telling my partner that I was worried about my symptoms getting worse, but we did manage to have one of the most honest discussions of my symptoms we've ever had. (We had just finished watching the Apple TV+ documentary "Still," about Michael J. Fox and his Parkinson's. My partner understands there's a world of difference between Parkinson's, a CNS disease, and PN; but watching the documentary spurred a wonderful conversation about what's required when it comes to managing neurological symptoms.) Acceptance is the key to relaxation, with yourself, your loved ones, your colleagues, and your neighbors. It took me a while to learn that lesson. I had to learn, too, that acceptance is not surrender. In fact, it's quite the opposite. Acceptance provides the quietude needed to fight in ways that you can fight. As ever, Ed, here's wishing you the best, too! ––Ray

Hi, Sue! (@sueinmn)

I was just telling @njed that I didn't get to "follow through" in confessing to my partner that I am becoming concerned about my balance possibly deteriorating but that she and I had the most straightforward conversation about PN symptoms we've ever had. We had just finished watching "Still," the documentary about Michael J. Fox and his Parkinson's. My partner knows that there's a fundamental difference between Parkinson's and PN, and the symptom-management challenge Fox is confronting, if compared to my wobbliness, would be like comparing Mt. Everest to a pimple; nonetheless, watching the documentary resulted in a level of PN honesty my partner and I had never had before.

What you said to your PCP, "I can't live like this anymore" ¬¬––six simple words amounting to the "best thing [I] ever did!" All I can say is, WOW! Ditto! Two thumbs up! (more if they were thumbs). I've taken to telling my doctors, whether it's my PCP or one of my neurologists, "this condition" (whatever condition we happen to be discussing) is "interfering with my life." I found that the expression––"interfering with my life"––almost always gets a doctor's attention. Privately, it tickles me to think of the "life" that's being interfered with: years ago (years before my PN diagnosis), the "life" was my long-distance running; a couple of years after that, the "life" was my joy in high-country hiking; only a few years ago (just before PN diagnosis), the "life" was my stage acting; today (with PN) the "life" that's being interfered with is walking confidently from my parked car to the front door of the local supermarket. How things change! LOL

I wish you a fabulous summer!

Cheers!
Ray

Hi! I'm neither in favor of never sugar-coating nor sometimes sugar-coating nor always sugar-coating. What I do is consider the person or persons I'm spending time with. The first example that comes to mind is my Friday writers' group. There are five of us, and we've been working together for a half dozen years. If, during our three hours together, I should get up to go to the Mr. Coffee for a refill (something I do with terrifying regularity), in the past no one would pay any mind to my crossing briefly out of the room. Now if they spot how I have to trace my fingertips along the edge of the mantle, then reach quickly for the doorpost, they'll notice. I decided some months ago it made sense to tell them what's what. With people like these people, in a circumstance like that, it was the right thing to do. It helps them, and maybe even more importantly it helps me. ––Ray