"Looking forward." Has PN taken that away from me, too?

Hi Ray,
Even though I can fully understand what you're going through, I would like to suggest to you a book called:
Don't Believe Everything You Think (Expanded Edition): Why Your Thinking Is The Beginning & End Of Suffering By Joseph Nguyen.
It completely separates our thinking from our thoughts and shows a path towards non-thinking which frees us completely. It's an amazing book. In other words, we think, then we overthink, then we get into the vicious circle of fear, then we become paralysed by our own thinking.
Try to live every moment you're in to its fullest because that's all you have. The previous moment is history and the next moment is an unknown future. We, with PN, cannot let our condition get the best of us no matter how tough it gets. Stare your PN in the face and dare to keep looking forward to things while cherishing every moment you spend with loved ones and with friends. That's something worth looking forward to.
Take care and have a serene evening,
gus

We all need to make necessary adjustments in life and if PN isn't enough to force these adjustments, let's not forget that even if we didn't have PN, just getting older makes us face changes and implement them. On the Connect, I've said many times don't look at what you can't do, look at what you can still do. Try to start each day on a positive note and keep in mind, there are a lot of things out there way worse than PN. And, if you feel you need to complain about PN, well....in a way, be happy because at least you're here to be able to complain. Ed

Absolutely! I can’t begin to tell you how many weddings birthday parties, my grandchildren’s events, that I missed because I could not muster up the energy to go. It has impacted my life in such a radical way. I was a real estate broker in New York always on the go very active. My life was pretty full. Since acquiring autonomic peripheral neuropathy my life has become so small. To the point where I was home alone every day, no social activity whatsoever. So I had to take matters in my own hand and started to see a therapist and found a wonderful pain management doctor. I recently began laser therapy on my feet offered by my pain management clinic. Today will be my fourth session and it’s absolutely working. Of course it’s not covered by Insurance. All the good things are not covered by Insurance. But I totally get what you’re what you’re speaking about and my therapist told me “you can sit at home and have the pain in your feet or you could go out and have a cup of coffee with a friend and the pain is still gonna be there, or perhaps it will subside because you’re with a friend and you’re talking and your mind isn’t always on your feet,”.
So go for that cup of Joe!

Wow, the secret joy I have when others cancel plans we had and I am not the bad guy! My dread of doing things sometimes is more from experience - knowing what physically exhausts me and the price I’ll pay in recovering the next couple of days. I’ve come to really enjoy coffee, breakfast, and lunch dates, as I consider those easy and in timeframes my energy stores are greatest. But most of our friends work daily and expect later social activities. They enjoy cocktail events and I don’t drink. They enjoy dancing, shopping, & pickleball, while I can only sit. I love entertaining but the kitchen work & cleaning and politely pushing folks out the door at my bedtime can be exhausting. It’s quite a challenge to appear optimistic about things we know will physically set us back!

But my number one priority is my husband. I am blessed to still have him and he has made so many sacrifices and concessions since I became disabled with PN. He’s 18 years older and needs to live life actively in his golden years and remain social. I try to reserve energy for things he likes to do. Any travel, sports events, and social gatherings that he wants, I don’t want to be the reason we can’t enjoy them. He’s also my best friend as, like others here, a lot have passed or drifted away over time. I’m most happy when my husband wants to stay in and watch a ball game together on TV. But when Steve wants to go somewhere, entertain, or travel, I put on my happy face and give it all I’ve got because none of us are promised tomorrow.

Ray - I am my best sitting in a chair reading. You need to publish some of your journals!

I can relate to your angst. My world is also pre-PN and post. I have become very isolated and am no longer out there. I spend a great deal of time at home with my dog. I now do my own haircuts instead of going to a salon. I belong to two book clubs which I try to attend. I am also more sensitive to weather and to advice people offer about this condition. So I try to avoid those when I need to. Many folk dismiss it as stress. Physical therapy has gotten me a little more out and about--I aim for three times a week as it is helpful. You are right, Ray--retirement is not always easy. You write extensively on these daily travails that our PN group faces and it is much appreciated

Hiya, Debbie! (@dbeshears1)

You gave me my first big Ha-Ha! of the day! I was fated to have a friend drop-by later today and my morning brain was already rehearsing several lame excuses for breaking the date when my phone rang: my friend calling to say he had the sniffles and thought it best he stay home. I quickly shelved my lame excuses and said something like, "Aw, that's too bad!" Ordinarily it really would be too bad (I don't like treating my friends that way), but this week is a devilish week: I've got two serious deadlines and meeting one of them is going to be tricky –– so, while I'm genuinely sorry that my friend has the sniffles, I'm glad to have recovered my afternoon.
For me, too, my No. 1 priority is my partner. I remind her every day that no matter how busy I may appear to be, she's welcome to interrupt me at any time; in fact, "interrupt" needs to be in quotation marks because any need of hers for the two of us to have moments together is a true treasure. I, too, make time for things she likes to do. (Amusingly, evenings we're in the midst of watching British gardening shows. My partner is a passionate gardener. I'm, at best, a garden appreciator. Nevertheless, I'll watch these gardening shows with her. Occasionally, toward 10 pm, I'll catch myself dozing. What's worse, my partner will catch me dozing! If she's calls my name –– gently –– I'll pop-to and say, with feigned alertness, "Oh no, no, no, I'd wide awake, honest!" 🙂 )

Have a beautiful day, Debbie!
Ray (@ray666)

this isn't very helpful, i know, just an indirect thought. I am in my 80's and have had a few minor problems, but still aggravating. I am working on my feet and legs, trying to get strength back. I will be doing my first Soft Wave treatment in a few days. I had recurring uti's for several years, which after a heck of a lot of searching the web, i finally found a solution to keep it fairly under control.....But, being persistent and searching , reading, searching, reading, i have found out about the above 2 things that is helpful. AND to my surprise, altho i don't need this info now, But at my age, what i found could be very useful in the near future, I found: for eye problems like macular degeneration, and other eye problems there are SMART GLASSES, which my retina specialists never told me about. I do have dry mac, and cataracts. these glasses are amazing as to how they can help near blind people see. I kept a print out to show my eye dr on my next visiit........AND, since i have signed up to different websites, i also got info on CANCER TREATMENTS WITHOUT SURGICAL CUTTING, they lay you on a table like you were getting a dexa scan or something, and their machine doesn't touch you, but somehow it gets rid of your tumors, etc. And it includes one treatment for lung cancer called HISTOTRIPSY which JOHN HOPKINS HOSPITAL does, altho, probably not all of their hospitals i suppose........which is a treatment with NO Cutting, and quick recovery. So the only think i guess i am pointing out, that with my potential of going blind w/ dry macular, and trying to get my Neuropathy under control, and the other minor irritating things i am dealing with.........that my persistent researching, signing up for things like at the National Institute of Health, On going info from an Ultrasound association, etc., that at Least , I have found very important info out there, that our regular primary care, and specialists, do not yet know, and that could be extremely useful in the future. So, if one is not able to do the physical things they used to do, maybe keep an eye out for all the knowledge out there, that could be useful to you for future problems. Dang! if i get cancer, i will be facing it with knowledge i just found, and when i might be told i need chemo , radiation, or surgery, i will be able to track down hospitals, dr.s , who offer this gentler treatment. when i might be going blind, i will be checking out Smart Glasses. I kept the printout so i know how to contact the source. i am not going down without a fight, i am kickin and screamin, and getting all the knowledge i can to go as easily as i can, instead of drugs, surgeries, blindness,. ....if nothing else, see what amazing info you can find out there .....you might even stumble on something for your NP???

Good morning, arcuri24 (@arcuri24)

Like your, all the events of my life can be best explained as pre- or post-PN. In my case, too, events can be related as either pre- or post-sepsis. Until I had my sepsis attack a year ago last April, I'd been doing a pretty good job of forestalling the isolation that too often comes with having a chronic disease. Sepsis changed all that. Sepsis made my balance worse. Along with worsening balance, I allowed myself to become more and more isolated. It was only a month or two ago that I began to take notice of how, whenever I'd call my two voicemails (I'm one of the remaining 11 people on earth who still has a landline 🙂 ), I'd hear "You have no messages." Whoa! What gives? What have I done to myself? What have I allowed to happen? Since then I've been making a concerted effort to keep up with my friends, if not always able to see them, at least having rich, unhurried phone chats.

People at Connect now regard me as a broken record (or, to keep it 2025, a malfunctioning Spotify) because I so often quote choreographer Twyla Tharp's book "Keep It Moving," but something you said recalled something Tharp says:

"As we get older and our bodies enjoy less natural freedom of movement, we tend to take up less space both physically and metaphorically. Here's the end point of this tendency: our backs arch forward, no longer straight and long. Our steps shorten from a stride to a shuffle. Our vision narrows, slowly erasing the periphery, leaving only what's in front of our nose. No wonder we prefer remaining at home, our life lived in fewer and fewer rooms."

That's exactly what had been happening to me –– or what I'd been doing to myself: living my life in fewer and fewer rooms. I'm trying now to fight back. It's not easy, but I'm trying.

Here's wishing to a wonderful day today!
Ray (@ray666)

Hello, liloldlady (@lilodlady). You Connect name gave me a huge smile!

I'm in my 80s, too –– well, just 80, but "just 80" qualifies me for full membership, doesn't it? –– and a great believer, too, in amassing information, or as you say, " … getting all the knowledge i can … " The problem I'm having, increasingly as time goes by and more and digital devices are added to my world, is trying to make smart decisions between all the information that's available to me. Like many of us, I feel like I'm being asked to drink from a firehose that's open full-throttle. (How to drink safely from an information firehose could be its own Connect topic. It probably already is.) I find the more I am asked to drink, the more cautious I become …

… the more determined, too, to identify credible sources. And that's not easy. I find the 24/7 availability of the Internet is itself a problem, or it can be. In order to more fully enjoy my three-dimensional life –– and prevent two-dimensional distractions (screens) –– I've had to resort to using a browser blocker. I'm so glad I have that blocker. Not only does it help me get some real work done, but also it enables me to only sip from that information firehose.

I'm on my feet, giving you a standing ovation for what you say: " … i am not going down without a fight, i am kickin and screamin … " Three cheers, liloldlady!

All the very best to you!
Ray (@ra666)

I, too, have a land line. I only use my flip cell phone to call for cabs when I am out--which is mostly doctor visits. I am trying to fight back as well. This disease has changed me physically and mentally. I have this anxious, edgy feeling all the time--no doubt due to the methylprednisolone which caused this malady in the first place. I am also coping with physical issues--wobbly legs and feeling of weakness in my hands. You articulate what most of us are feeling. It could be a better day if we had more support or cure.