PN and Resistance to Change?

Not more than once or twice a day 😵‍💫. I’ve learned to just grin and bare it 🤐

😀 Me, too, John! My partner actually apologized for having to invite a friend to join us for Sunday brunch, knowing how anything "not the way we always do it" might bother me. Well, yes, such things might bother me, but that bother will only last for a few minutes; then I'll be over it. The bother that lasts longer is how I feel knowing my partner thinks it's necessary to apologize. I like to say, "Can't you see how much I'm grinning and baring it" 😀

@ray666
I learned a long time ago, not to allow my illnesses to control my life. When my dad was paralyzed from the neck down I quickly learned how fortunate I was, even though I was having seizures daily or near daily, and my father was dependent for his every need, he too felt fortunate. There were so many others so much worse off.
Jake

@jakedduck1 Jake, I can't agree with you more! There are so many others out there much worse off. I have done my best, as well, not to allow PN to control my life. Of course, there are things I'm unable to do anymore but they are far and few between compared to what I can do. When we see people worse off than ourselves, that is the reminder how fortunate we are despite our disabilities. Ed

Your symptoms sound more like a medication side effect. My personality did not change with PN. I did take an antibiotic a few years back and had anger episodes. After reading the side effects of the medication, it noted ‘anger’ as a side effect.

Ray, I know exactly what you mean, and it certainly is not a medication side effect.
The pain and discomfort of PN will likely make anybody less "social". Think how you would feel about going to a party with a bad toothache.
I too try to push through it, to keep my life as normal as possible. One possible positive result is that I find the fear of the future event is worse than the actual event. It may be because having to socialize can be distracting from constantly thinking about the pain. Unfortunately (and not uncommonly) I find that distraction is one of the very few things that work for PN. For example, when I go for a bike ride with a friend, my feet hurt less than when I go solo. Perhaps this explains the relative success of mindfulness training.
Good luck!

No resistance to change at all!! Sure I get comfortable at doing things I know about or are more familiar doing. I do know my body has changed with my PN; my limits and abilities have changed.
I have habits that are hard to redirect. I always go to the same bathroom stall, I prefer aisle seats over window. But given no choice I change without bitterness. My husband & I usually dine alone but we love company. We love making new friends especially as we sadly lose some. We have favorite foods but like to try new ones. If we don’t like the food or company, we learn from it and try not to do it again. I have my favorite authors and TV programs but will take new recommendations from others. We intentionally turn down roads just to explore (well maybe sometimes it’s unintentional)
In s nutshell, my PN hasn’t caused resistance to change or shame. Maybe some disappointments or frustrations - but I only resist what I think can hurt me or set my physical progress back. But I think there might be a point where you find the perfect balance for you, and you might decide if it’s not broken, don’t fix it?

@ray666 Ray, you have brought up a good topic. After I receive a diagnosis on an issue, my wife has often said to me that nothing has changed. Only difference is, it now has a name. So, the question is this, what has changed with you? Have things changed physically since you now have a diagnosis? And is your PN still the same? I went to Mayo and left 7 days later the same as I was when I arrived. I left with a confirmed name for my PN, but like many, no cause. My diagnosis could have been worse. I left MN with mixed feelings but satisfied. Yes, PN will change our lives and that is inevitable, mostly what you can and now can't do with the can do's being way more than the can't do's. I found it easier not to resist to needed changes and in time, I think you'll do the same. I try to do things as I've always done them, sometimes it works and at times, it does not. I think that clutch in the stomach will in time simmer down. Good luck. Ed

I think my reaction to change could be described as anxiety. I have a pretty limiting routine that works most days. I have settled on no morning appointments ( due to dizzy spells), the first hour of the morning in the recliner with a heating pad on my back ( it’s so tight and painful when I get out of bed). Other pretty firm rules that I’ve come up with. When my routine is threatened, I feel a rising anxiety. This really irritates me, because anxiety is something I never lived with “before”.
Since I’ve identified this anxiety reaction, I’ve been working to soften some of my rules. And of course, it’s been fine.

Well I’m glad to hear most comments are positive and people are still “living “ however I’m with Ray in this. I’m sure you can say it’s anxiety related but I have anxiety and I think people don’t actually understand what it is. It’s brutal and it comes on unexpectedly and I believe it gets lumped in with “nervousness “ and it’s a far cry from that. But back to Rays feelings of gut punch. I am the same way I cannot tolerate people, going out, eating out, etc unless it’s absolutely essential or for the doctors appointments. I miss the old me every day and my adult children still think I’m her. It’s very hard to explain something to our families that they can’t really see or relate to. I’m so sick all the time whether it’s my sfn pain or it’s many spin offs of nausea, bladder issues, heart racing, intolerance of smells or temperature regulation. The fact I can’t wear normal clothing because it’s like needles sticking into my skin. Then there’s the osteoarthritis and neck pain and back pain. No one invites me anywhere anymore, just my husband and that’s ok with me. I used to feel the guy punch but I’ve gotten over it. I need to take care of me. I spent my life taking care of everyone else and raising a family and working and finding balance to handle it all. I would give anything to have all that back but time moves on and unfortunately mine moved in the wrong direction. I never pictured my life like this. I don’t live anymore I just exist. So it’s up to me as a 58 year old woman to decide what I need and it’s certainly not a few hours of suffering for a brunch that will inevitably keep me in bed for 3 days. Don’t feel bad Ray. Think about yourself first and if you can’t handle it then I suggest you skip it. The gut punches will eventually stop.