living with PN
 

Since I was DX and even before - I tried to fight the PN. Seeking for everything that might help. But facing the situation - it is a long fight...

What do you do in order to accept the PN? How do you learn to live with it? with the pains and all the other things that connect to it?

Well, amit, I have learned to just try and find the right combo of meds and supplements that help the best in treating the symptoms. I participate on this forum as much as possible and review info posted here. My wife is very supportive, working extra time to hlp financially, helping me around the home, hugging me, etc., etc. I try to spend as much time as possible with my young son, taking him to tee-ball practice, playing bakugan on the floor with him, helping my neighbor work on my son's '56 Dodge Kustom, etc. You know, my son started limping around the house immitating me because he was having sympathy issue. I appreciated his concern (he is only 6 y.o.) and of course talked to him about it, so he doesn't do it, but even that he did it shows his love for me. You can't ask for anything more than that.

Accepting that my lifestyle has changed forever and modifying it so that I can do the max I can, is a start. Having a great family who are very supportive is a must. Having friends here, though only by the web, is nice as well. Don't feel sorry for yourself, just adapt as best you can, and I think you'll find that you can survive with a decent lifestyle with the love and support of your family. That's good enough for me!

I'm an atheist, so I don't pray or participate in any religion, nor do I have any need for it. But if you find that that helps you get through things, by all means go for it. Whatever (that's legal) you find that helps you deal with this and be as normal as you can, that is what you need.

Best of luck, dude! We all support you here.

Jay

P.S. The other thing I do is think about all those folks who are in wheelchairs, blind, or with terminal cancer, and be thankful that I'm not having to deal with their issues. I am very fortunate, if you look at things as a whole. :-)

Strictly speaking I haven't got peripheral neuropathy, because the cause is injury to my spinal cord, so it should be called central neuropathy or something like that. But the symptoms are much the same, ever-present but variable neuropathic pain in my legs, and pretty poor mobility. It kinda helps that I have accepted that there is no hope of cure - they say that although peripheral nerves can regenerate, the spinal cord cannot (though maybe there is a glimmer of hope in stem cell research).

However the big change for me was after having tried all the recommended drugs and discovering that none of them helped, I realised I just had to accept the pain "as part of me". I still complain and grumble as much as the next man, in fact I feel that, because the pain is part of me, then I am allowed to complain and groan! But I also have licence to get on with my life within the limitations. Hope this helps a little, hope you won't see it as a negative attitude.

What helps me except my PN a little better (though I may vent a lot on this forum) is plain and simple, hope. Just like my name. There is always a part of me that somehow believes that I can somehow improve, get better, and have a reasonable quality of life. Yes, we read about the bad cases and the negatives, but I am sure there have been people with PN and depending on the cause and circumstances, have improved and healed. I tell myself that they are just choosing not to spend as much time on the net at PN sites now that they are feeling better. So I don't come across them as much.

When I developed severe pelvic floor dysfunction, which caused me agonizing pain, I went on all of the sites on the net about it where it was called permanent, chronic, and long term, where women were suffering horribly for years and years. Talk about depressing. When I finally found what worked for me, I became 95% better. According to them, I beat the odds. Again, I just feel everyone is different and you never know what may happen. Having hope makes all the difference for me.

It's like going through Grieving.. there are stages...
 

I think accepting your diagnosis is like grieving the loss of a loved one...
You are grieving the loss of who you were before. You are no longer the person you once were. You have to accept the fact that you are, and always will be a different person. You have limitations now. You are no longer the person who could live life pain free.

1. Shock & Denial
2. Pain & Guilt
3. Anger & Bargaining
4. Depression, Reflection, Loneliness
5. The Upward turn
6. Reconstruction and working through
7. Acceptance and Hope

This process can take a long time, and you can go in and out of the stages many times. I think that right now, you are between stage 3 and 4.

Sometimes you get "stuck" on a level and may need help getting past it. I got stuck in #3 for a while! Then I was really stuck in #4.. because I was also grieving the loss of my mother... Like I said, we can slip back into previous steps sometimes...

I have been a type 2 diabetic since 1996 and always denied or ignored the tingling needle like sensation for years. My diabetes was never controlled nor did I make any effort to control it. Shame on me. I have regretted this horrible and find myself stuck on step 2. In August I finally lost total feeling in both my feet and the neuropathy has now progressed to both of my legs.
I worked up until August then left on short term disability then long term disability. When I was approved for my long term disability the company I was working for for over 8 years let me go. So now I am unemployed but collecting LTD benefits until 2011.

The most difficult part for me is the pain. I have not found the right combination of medication so that I can be some what productive right now days and nights are spent in my bedroom in the bed or on this computer researching and trying to find tips to help me. I have found this site and it has been a blessing because you will find people around you don't have a clue about the disease or the affects it will have on you pain wise, physically and mentally.

I have not fully accepted it. I hate leaving the house for anything, hobbling around stores looking for places to sit down to rest taking hours for one simple task..I hate it and it frustrates me.
I was a athletic mom very active in my sports I have 5 children the youngest a miracle baby 2 yr old and know to realize that she will be short changed having a mother that is not able to move around, be in a pleasant mood etc... it sadden me deeply..My husband was laid off in January and just got another job he starts shortly..Now I dread him leaving me alone now. I forget alot ie., leaving the stove on, running water in kitchen sink etc..(due to very high dose of gabapentin) I am going to stop venting now...

I wish you luck and hope you are in the early stages because they say nerves can be regenerated if caught early.

OK to 'Fight IT' means to...
 

UNDERSTAND IT! In my humble estimations....
That's what I set out to do when I first got WHOMPED! with a serious auto-immune version of PN.
Now, I was FAR from ace in chemistry or biology in the detail parts...couldn't even master the 'elements chart'! But I set out to read as many of those available for free medical papers on the web about neuropathies and possible causes...little is being done about 'curing it all'. There are enough words in the articles that ARE part of the English Language as we know it so that we might be able to 'get' anywhere between 20-60% of what's written... the 'getting' more comes with lots of practice.
IN understanding what's going on? When something new happens, I'm better able to sort out what's a bad new or maybe a healing new 'feeling'. And thus not freak out.
As Hope said? HOPE is key to this all...PLUS Eating and living right as best as possible. Also trying out vitamins and minerals that can help things along. With caution and prudence, they CAN make a big difference for many.
I hope this helps, keep faith and hope...with that comes patience. - j