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← Return to Me & my PN: Why do I lie?
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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.
Replies to "Ray thank you for posting about this. It certainly struck a nerve, or many as we..."
You mentioned "there isn’t a lot of to see except for some red feet". You are the first person I've seen in this forum regarding this. I also have bright red feet. It started as a small strip of redness across my right forefoot about 1.5 years ago. My PCP, Vascular doc, Podiatrist, pain doc have no idea what is causing it. Last stop: dermatologist this week. I also have burning pain, numbness & some intermittent swelling (primarily, on my right foot). The skin looks dry, cracked, tight, waxy & horrid, regardless of how much shea butter & Aquaphor I apply. Has anyone addressed this with you? I can't find any answers. Reading your post really hit me (I'm even the same age as you). Wishing you all the best. Thanks.
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Hi, tprift, (@tprift)
To tell? To whom? How much? I don't know the answer to those questions, not in a one-size-fits-all way. As I struggled to say in reply to someone else's post a short while ago, I try to consider with whom I'll be spending time with. I used my writers' group as an example; they're people who needed to know, both for my sake and theirs. It was about three or four months ago I came clean with the group (and we're friends, too, and that's certainly a factor). Before I told them, they'd see me having a little difficulty moving from here to there (the tiniest difficulty); individually, they'd ask me, "Is anything wrong?" If I hadn't come clean, I'd have left them in suspense. I'd have resigned myself (chicken that I am LOL) to always covering my little PN Oops! holding they'd not be noticed. Since coming clean, my PN, as a topic, is off the table, last year's business, nothing to be gained by talking about it. That has left us all relaxed the way we had always been. Would NTK be a good mnemonic? NTK for "need to know"? Does this person, or persons, have a need to know about my PN? My partner, yes, My doctor, yes. My writers' group––because I'd weighed the pros and cons––yes. My auto mechanic? Probably not. My mail carrier? Something tells me no. Someone along the line defined four categories of friendship: intimate, close, casual, occasional/transactional. So, maybe: NTK intimate, yes; NTK close, some yes and some no; NTK casual, more nos than yeses; and NTK occasional/transactional, only under the rarest of circumstances (like maybe your high-wire walker trainer).
Have a great week coming up!
Cheers!
Ray