Anyone in their 20s, 30s, or 40s here? How are you managing?

Hi @seathink, while you wait for members with experience to respond I thought you might find it help to scan through posts by members in the following discussion to see if there may be suggestions that help.
-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
Here's a search of Connect using "chemo-induced neuropathy what helps" that lists a few other discussions and comments from members - https://connect.mayoclinic.org/search/discussions/,

Hello Im late 40s. I cant really say that I am managing. Ive been trying some exercise but think that is making me worse. I dont have pain but my feet feel like they are broken (I know doesnt make sense but thats how it is) and I can barely walk…..I limp. I believe a wheelchair is in my horizon. Regarding the next 40 years I really dont know what is going to happen. Next year is going to be a big turning point in my situation and if I continue to decline I wont be able to survive on my own due to my current circumstances and the symptoms of this damned disease.

Apologize if this was not the positive answer you may have been hoping for but as I keep hearing this disease is different for everyone and that is the reality of my situation. Ive went a bit more in detail in past posts here but dont want to dox myself….

Im not being negative just honest. I have axonal demyelinating sensorimotor polyneuropathy, Type 2 diabetes and some other stuff 😔. This all started with a diabetes diagnosis and quickly went downhill from there. Two years ago I was a completely different person. Ive tried supplements, exercise, diet - nothing has really helped honestly. I can’t really talk to others about this because if they don’t have it they cant really understand. I have tried but always feel ignored or made to feel like Im exaggerating.

Im not looking for sympathy or having a so called pity party - this is just my reality. I can’t pretend to be happy. I’m not. However, I still do greatly enjoy bacon and eggs.

Hi @megidigo ,

I appreciate your answers - I got so much blow-back from family who thought I was being too negative, first about the cancer, and then about the neuropathy, and honestly I think friends were overwhelmed, too.

This is exactly what I was hoping for, maybe a small band of us on a thread where we can really talk to each other about the good and the bad as it is as a "younger" person. To be heard.

From the outside I look fine, and honestly unless I get a cane down the road, or an arm amputation way down the road (the radiation brachial plexus was very common for women in the 1950s, often leading to that), no one sees what I am dealing with. And most recoil at the thought that I would "ever need" such a thing.

I am so sorry to hear about the progressions, that you are suffering through - it's really awful, and hopefully I can be an ear when things pop up that no one else sees, or understands.

Support that can only be positive can't be support at all, so I'm hoping for a thread where we can just be here for each other.

I just realized I made a thread similar to this when I first joined but did not receive much response. I did search and noticed that there were some posts by younger people at different points.

I apologize about my posts as Im usually in a constant state of panic. Sometimes I may make a post that is of help but trigger warning this is not one of them but one of my vents I ‘spose as I drink a morning coffee and think of what is to come and it is going to arrive without a doubt nearing as the days continue. My main issue with this disease is that it is a very good likelihood it is going to cause me to be homeless. There is a saying that “ everyone is one job loss or illness away from homelessness.” I was always aware of that but foolish enough to believe it couldnt happen to me. The problem is with having this disease at its severity at this age is I cannot work for various reasons from the mental and physical effects. I had to turn down jobs as Im debilitated. Ive worked, supported myself and lived alone until this happened for over twenty years. I would be homeless allready except for one reason but do not want to dox myself. I often feel like everyone I know, includng family is watching me in a slow car crash. Honestly do not know what to do. I’ve let my doctor know that this is not acceptable and Im not going to sit alone withering away (i keep losing muscle and weight) for another 40 years and definitely not on the street. Deciding to go at life by myself was a mistake Im realizing as I cannot survive alone in real life with this. Ive made many mistakes in life but acquiring this disease is the biggest mistake of all as it is partly my fault. I often think of disappearing and living off savings but that wont last long and I will need a wheelchair, naye, possibly a powerchair as my arms are beginning to be infected by this alien. Unrealistic but who knows at this point. Two years ago if you would have asked me about the life Im living now and I would have said yeah that is not possible but the person from two years ago no longer exists and I fear is gone for good. Sitting around watching tv for 40 years is not an option either. This just may be the beginning of the end as Jim Morrison once said “Can you picture what will be / So limitless and free / Desperately in need / Of some stranger's hand / In a desperate land/This is the end/My beautiful friend/The End”

Ive read some of your posts and have found some hope from your story. Where you able to return or retain work as I noticed you were asking about a computer in the past? You show strength and resilience. Is there anything that has helped you physically with neuropathy?

Also I do not understand how someone could tell a person they are being negative regarding something like cancer. Well I guess they do not understand until something life changing negatively affects their life. There is another saying that disability is the one club and minority that anyone can join at any moment. Membership is always open…

Hi @megidigo

Sorry for the late reply - kiddo got sick. Yeah, my family is really crazy - even as late as last Christmas they were sending out holiday cards with the letter being all about how me having cancer "was the best thing that ever happened to our family". I try not to talk to them much, and we really don't visit...

As far as the keyboard, with repetition and some mechanical keyboards I've been able to get back to competency, but certainly not the precision that I used to have, especially with 10-key. I think I will need to switch to a left-hand 10-key but I don't want to stop using the right and then "lose" it more. When the neuropathy first hit I couldn't write or type at all, and both career paths that I have pursued for the last 20 years need both, to say nothing of the daily journalling and such that I do.

Work-wise I had been freelancing for a CPA firm so I would take a few weeks off to heal up and then be able to get back going. Unfortunately, they just got bought out by a private equity firm, so although the team I was working with desperately wanted me back after my last break, the corp vetoed their request.

I am working on pivoting to more writing and less data entry. I got super lucky, though, my partner is a plumber and so we have that income.

Facing this stuff alone is super tough --- know that you have an ally over here. The progression is daunting, that's definitely one reason why I wanted to connect with others in our age range, to at least have someone to talk to when it's tough and the future years loom.

I'm not on any supplements or doing anything special for my hand, just trying to eat healthy and exercise. For my feet, I have a hereditary propensity to hammer toes, which I see from the posts can lead/be part of foot neuropathy, so I use "Correct Toes" and barefoot-type sneakers. Trying to figure that out, and also trying to stretch the tendons for the toes, pretty much they all are "claws" or "hammers" at this point.

The only thing that has helped was the hyperbaric chamber -- not the consumer ones in the mall -- my radiologist at UCLA kept pursuing the big hyperbaric at UCLA, and I really was lucky because I was still seeing my cancer team when my arm just feel apart.

Again, I hit the lottery with my partner and he took of everything while I commuted to it for 8 weeks (not only was he there when I got diagnosed with the TNBC, he *didn't* leave (apparently a not-insignificant number of guys leave their gals when they get cancer), and he took care of the baby and me the whole time. Covid definitely helped because he was out of work for a couple years, though, but we were able to pay for COBRA and use his really good Union health benefits to pay for it. We did go bankrupt eventually with all the costs of treatments, even with COBRA, or maybe because of it.

I don't have any happy news to guarantee to reverse progression-- I can recommend the chamber if things are newly developing, but as they kept saying, nerves are tricky. I feel very lucky to have had that treatment, but I know the real deal is expensive and unproven for neuropathy.

Anyway, sorry for the long missive. I hope you are having a good Labor Day, and know that I want to be able to support you as an ear to hear what you are going through.