Quote:
Originally Posted by dahlek
Why? Because HOW YOU feel your pain is likely quite different than how others feel theirs...
Some folks feel that they have to shout out about their pain. Here? Just speak it and try to do it quietly and with compassion for others.
Some here suffer compounding insults as a result of whatever started the neuropathy[ies] and are far less mobile than the majority here.
I for one, am simply grateful that once I go to sleep? I don't feel the pain. That I can do this? IS A GIFT.
I do mourn what I COULD do 'before'? But I've learned to accept where I AM 'now'.
What has helped me, and others has been the kindness of many here. They taught me how to learn about PN and all it entails [and, some PN's can be deadly serious] and how to 'keep' myself better physically and nutritionally to at least, keep 'things' from getting worse.
Like those w/MS or PD? We too have to go thru a sort of 'mourning period', as we ARE changed. Then, slog on. Hopefully fighting, biting, kicking and screaming every step of the way!
We must get smart, then smarter in the self-advocacy quarter and speak up often in forums we'd never imagined being in. Medically, socially and other venues.
Lastly? We must be ALERT! In my case, it's all hindsight, but a simple autoimmune issue cascaded into one expensive set of other immune issues! Avoid that at ALL COSTS! READ! LEARN! GET SMART! BE POSITIVELY ASSERTIVE! You've got the cup-whether it's half full or empty? The CUP of knowledge is in your hands to gather what you need to get by.
When I'd first gotten my neuropathy, I was in PAIN 24/7, I cried often, screamed at the walls often. And surrendered as it did no good, nor did anyone understand [still don't]. And I got my revenge by learning and getting treated for my PN PROPERLY. And....that was before I'd found these great folks here!
My heart goes out to you, I truly hope you can find your way to some sort of sunshine.. Complain, but ask questions in the process, so folks here can help you w/some of those pesky aspects of it all...from shoes to socks to lotions/potions and vitamins... We're here and we can be good shoulders too.
 's - j |
Everything you said was perfect. I myself can relate personally to a few points you made, I too just said the other day how grateful I am that my pains stop when I sleep, I never thought before this happened that I would be grateful just to be able to sleep, so many things I took for granted. Yes, I have gone through a mourning period, the body I once took for granted is gone, I am in the process of learning to live with this new body.
I too have cried just about everyday for a year and a half and have yelled at walls and punched pillows. There is no one in my life that understands this to this day except the people on this site, another reason to be grateful.
I am still looking for a cause for mine, I am not chalking it up to idiopathic too fast, if there is a cause that can be controlled it will slow the progression of the neuropathy. We must be our own advocates, Dr's only go so far, when we become less cost effective for them, they stop searching for a cause and just keep increasing the meds (that is where I am now.)
Thank you for your post, it was very inspiring and at the same time very realistic.