Addressing the psychological impacts of neuropathy

I have had my neuropathy for about five years. It has been progressive, starting with numb feet and fingertips, now it’s my full legs and has been very painful. I could walk independently until about a year ago. Now I need a full time walker. I think this past year has been my worst psychologically. I have been to some very dark places with reality settling in as to what I can and can’t do now. How I can and can’t live now. My balance is totally gone. I have a beautiful grandson that I have never been able to pick up. I’ve only seen him twice in two years. I was trying to muster up the courage to go see them next month for his birthday but after seeing my neurologist the other day I am going through another round of full spinal MRI and other tests two days before his birthday. I’m not sure what got me out of the blackness but I’m not dwelling on the negative so much. With spring coming I am loving the rebirth of our surroundings. I have a boyfriend that takes very good care of me and for now we’re ok. My Dr. still gives me hope so we’ll see. Sometimes it’s hard to read these entries seeing how long people have suffered, but I learn from them what helps. Good luck to all.

I'm sorry to hear what you're experiencing, that sucks. It's hard to comprehend when you're given a diagnosis for a medical condition that has no cure, can't always be treated successfully, and is a lifetime sentence basically.
In my case, I've been dealing with osteoarthritis for over 20 years, and neuropathy in my feet for 10 years now, and it can be overwhelming at times.
If there's any way you can see your grandson on his birthday, do it, whatever pain or inconvenience it may cause, it'll be worth it in the end. Our grandkids are one of the few reasons I'm still here dealing with all this crap everyday.
All you can do is take it one day at a time.

I'm sorry to hear what you're experiencing, that sucks. It's hard to comprehend when you're given a diagnosis for a medical condition that has no cure, can't always be treated successfully, and is a lifetime sentence basically.
In my case, I've been dealing with osteoarthritis for over 20 years, and neuropathy in my feet for 10 years now, and it can be overwhelming at times.
If there's any way you can see your grandson on his birthday, do it, whatever pain or inconvenience it may cause, it'll be worth it in the end. Our grandkids are one of the few reasons I'm still here dealing with all this crap everyday.
All you can do is take it one day at a time.

Andy, I kind of liken dealing with PN to mourning. We go through stages of grief. My PN left me instantly & permanently disabled, though I’m happy today to be able to get around with a walker vs wheelchair, and even drive. I spent time in denial and sadness. I spent too much time in Anger; anger at Neurologists most for not knowing the cause, how to cure, how to live with it, what to expect from it, and Anger that the several I had seemed to lack compassion. Then Anger at friends and relatives who were clueless about my condition but felt like experts in telling me what I should and could be doing. Sadness from separating from friends (and some family) because my physical limitations no longer allowed me to participate in activities they liked & should be able to do in these later years.

I finally came to acceptance, fighting hard to control my own destiny as best as I can, learn to find activities to keep me busy and interested, and cheer and encourage people around me to not let me hold them back from activities good for them just because I’m unable. It’s harder for my husband, but I try extra hard to do as much as I can with him, because he sure has made a lot of sacrifices for me. He’s so happy for me to travel and go to ball games with him that he doesn’t mind having to have handicapped friendly seats.

This has been a difficult 24 hours. My stepdaughter insisted we join her husband and teen daughter at a Lakehouse they rented. I sat on the main level balcony reading, watching them below at the pool. The pool required a full flight of stairs up & down the back of the house, as well as 3 unrailed tile steps within the pool area that would require people lifting me up and down. They were frustrated with me because I wouldn’t do it for them, not understanding that a little fall would land me in a rehab home with serious damage potential, and I have to make the decisions on risks that I take. I had to argue nicely while encouraging them to PLEASE use the pool without me, they’re on vacation! Finally bedtime, and the young healthy couple and teen had to have the main level bedrooms. Hey, they rented the place, they’ll be here a few more nights, and we’re only here for 1 night. Handicapped me and my 79 year old husband were given the basement suite. It’s very nice, but required a dangerous spiral staircase down. My walker stayed upstairs, and I made the trip down only once, at bedtime. I’m blessed my husband carried our bag. I am a prisoner in my cellar bedroom this morning, dying for a cup of coffee, but the only thing I can smartly control is my decision that I will climb those dangerous steps to the main level only one time today, and that will be when the rest of the house is awake and I’m showered and fully dressed and packed for our travel to our next destination, which includes a hotel with an elevator!!

So, when I’m upstairs and enjoying my coffee with my husband’s family in another hour, I will rejoice! But Andy, you’re right, the psychological stuff is real and challenging, and certainly never ending. We just have to keep trudging along the best we can while trying to keep the most sincere smile on our faces. I have been in dark places physically and mentally. I couldn’t control what happened to me or how I got here, but I am in control of a lot of the risk decisions I take, because my goal is to not get hurt and further handicap myself and my loved ones. It often means pushing back against people who think they know more about my abilities than I do after 8 years, but I’d rather them get mad than me break a leg or worse. What I’ve learned about this is more respect and understanding of other folks fighting challenges, and makes me more compassionate and flexible for them.

Andy, I kind of liken dealing with PN to mourning. We go through stages of grief. My PN left me instantly & permanently disabled, though I’m happy today to be able to get around with a walker vs wheelchair, and even drive. I spent time in denial and sadness. I spent too much time in Anger; anger at Neurologists most for not knowing the cause, how to cure, how to live with it, what to expect from it, and Anger that the several I had seemed to lack compassion. Then Anger at friends and relatives who were clueless about my condition but felt like experts in telling me what I should and could be doing. Sadness from separating from friends (and some family) because my physical limitations no longer allowed me to participate in activities they liked & should be able to do in these later years.

I finally came to acceptance, fighting hard to control my own destiny as best as I can, learn to find activities to keep me busy and interested, and cheer and encourage people around me to not let me hold them back from activities good for them just because I’m unable. It’s harder for my husband, but I try extra hard to do as much as I can with him, because he sure has made a lot of sacrifices for me. He’s so happy for me to travel and go to ball games with him that he doesn’t mind having to have handicapped friendly seats.

This has been a difficult 24 hours. My stepdaughter insisted we join her husband and teen daughter at a Lakehouse they rented. I sat on the main level balcony reading, watching them below at the pool. The pool required a full flight of stairs up & down the back of the house, as well as 3 unrailed tile steps within the pool area that would require people lifting me up and down. They were frustrated with me because I wouldn’t do it for them, not understanding that a little fall would land me in a rehab home with serious damage potential, and I have to make the decisions on risks that I take. I had to argue nicely while encouraging them to PLEASE use the pool without me, they’re on vacation! Finally bedtime, and the young healthy couple and teen had to have the main level bedrooms. Hey, they rented the place, they’ll be here a few more nights, and we’re only here for 1 night. Handicapped me and my 79 year old husband were given the basement suite. It’s very nice, but required a dangerous spiral staircase down. My walker stayed upstairs, and I made the trip down only once, at bedtime. I’m blessed my husband carried our bag. I am a prisoner in my cellar bedroom this morning, dying for a cup of coffee, but the only thing I can smartly control is my decision that I will climb those dangerous steps to the main level only one time today, and that will be when the rest of the house is awake and I’m showered and fully dressed and packed for our travel to our next destination, which includes a hotel with an elevator!!

So, when I’m upstairs and enjoying my coffee with my husband’s family in another hour, I will rejoice! But Andy, you’re right, the psychological stuff is real and challenging, and certainly never ending. We just have to keep trudging along the best we can while trying to keep the most sincere smile on our faces. I have been in dark places physically and mentally. I couldn’t control what happened to me or how I got here, but I am in control of a lot of the risk decisions I take, because my goal is to not get hurt and further handicap myself and my loved ones. It often means pushing back against people who think they know more about my abilities than I do after 8 years, but I’d rather them get mad than me break a leg or worse. What I’ve learned about this is more respect and understanding of other folks fighting challenges, and makes me more compassionate and flexible for them.

Je me suis reconnue dans votre récit. Egalement atteinte depuis 8 ans. Traitée par immunoglobulines. Ça m’aide mais bien entendu ça ne guérit pas. Les jours se suivent et ne se ressemblent pas. J’utilise une pommade de Laroxyl (préparation en Pharmacie) et que je garde au frigo. Ça m’aide à calmer (momentanément) mes brulures- j’utilise également les patchs Versatis.
Quand les douleurs sont insupportables je prends Izagi + 1 Doliprane (tous ces médicaments m’ont été prescrits par ma Neurologue)
Bien entendu je ne peux pas faire de projet
Je ne peux pas faire

Hi…I also have osteoarthritis along with neuropathy…do you take anything for the osteoarthritis? I don’t know if it matters but I’m not sure which discomforts are from the neuropathy or the arthritis.
Steve