Dear Aussie Debbie,

There are probably many here that can relate to your "rant" as you called it. We can also relate to the feelings after the rant.

I went from working 3 jobs simultaneously to working none and my relatives acted like I was just tired of working and quit. Did they also think I won some big lottery jackpot? I went from busting my butt just to make ends meet to NO income by choice? I was my only source of self-support and they did not realize I was "forced" to quit from unrelenting pain? It has taken years for them to realize this was not a choice. I don't even allow them to come to my house because I can't keep it presentable any more. They still don't have a "true" understanding but they seem to be finally getting the picture. Did they think I just hide in my house all alone for fun? That only one month of each year is not filled with doctor appointments? That I see a pain mgt. doctor for fun? That I have 8 doctors because I am perfectly healthy? That I only go to the grocery once a month because I don't like having food in the frig? That I take 14 pills a day for laughs?


I am ashamed to say but before I lost my health, I had a friend that was unable to function normally and I, too, did not understand until I was faced with my own inabilities.

I have also wished when someone does not understand, that I could transfer my pain to others just so they could have an appreciation of what I live on a daily basis. No, it is not that I wish them harm, just a temporary transfer to open their eyes.

Your "rant" was so very well written. So much of what I have felt at times. Also, the removal of much detail before clicking on post, sounded like what many of us would do, too. (Like my next paragraph -- maybe I should delete it.)

I know some people that NEVER complain and when they die, everyone is shocked. What happened? That was sudden! Etc. Well, I DO complain. I complain to anyone that I feel cares about me. I don't want them to wonder what happened when my time comes to exit this earthly world. I want them to know, not just for my sake but for them as well. I don't want them to be shocked. I also want them to know my conditions so that when I need them, they will respond and be able to speak for me if I can't. I want them to call and check on me so that I don't lay dead for weeks before anyone realizes it.

There was a time when I thought my health was no body else's business and it was private, to be strictly between myself and my doctor. I now believe that at least one relative should know what is going on with my health. It could make a difference between life and death in some situations.

I am willing to bet that your mother would be VERY upset if she was not informed of your health and if she felt you purposely kept that information from her. She just does not understand. Unless someone experiences it themselves, they do NOT understand. That is why NT is so important to us. Here we find understanding as we encounter people that DO experience what we experience. From similar experiences comes true understanding.

Love does not always mean understanding. I know my relatives love me,.... they just don't understand but are getting better. It has taken 10 years but it is a start.

You all said it quite eloquently, not much to add except that I feel guilty that I talk to my hubby so much about my feet. I wish I didn't, but my life revolves around it now, no avoiding it. Bless his heart, love him so much for never complaining, even though I do.

hugs to all of you!

Its a dual blade sword and your going to get hurt neither way. ***** and moan and your friends will quickly disappear, they want to help but cant and cant handle the situation

keep quite and people will start to say "seeee I told you all you needed to do was get off the sofa and start walking outside. You look fab and your feeling so much better" ROFL!

I wish she could be more understanding and sensitive to your suffering. I am sure she loves you, but probably doesn't really have a clue. I think most people who do not suffer from chronic pain really don't understand how disabling it is.

When I first developed PN, I met a friend also with PN. We talked a lot on the phone, comparing symptoms, tests, things that made us feel better etc. Then, all of a sudden, it was like a curtain fell down between us. She told a mutual friend that she couldn't deal with people who could not "get over this." She dropped me like a hot potato...

I do hope your mom comes around and tries to understand how you suffer and how much it impedes your life...

Cathie

Your mother sounds very toxic and maybe this relationship is not good for you. Maybe that has nothing to do with your neuropathy and a lot to do with your past. She needs to see you as dishonest to absolve her own guilt. Been there, and feel very strongly about it. Toxic mothers, narcissistic mothers, there is a lot of info on the Internet if you want support.

http://narcissists-suck.blogspot.com

Do not be hard on yourself about this. Yes, it is always good to avoid talking about our health, a good rule for anyone. I limit myself to a few minutes a day to vent and I don't always get that in the sense that I often don't feel heard, but it takes time to get used to the new normal and when things are happening, changing quickly for the worse, it is hard to think of much else.