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

AussieDebbie, I'm sorry to hear that you're dealing with this. You have no need to worry about speaking of your aching frequently; for it is yours that you feel and yours to speak of.<3

--about that rant; that's part of what these boards are for. A number of us here rant about all sorts of issues on a regular basis (not just our own personal situations and lack of empathy from others but clueless doctors, unthinking media, and the like--I happen to think we're not only informative and helpful in this but often quite entertaining.) And, of course, many of us can relate extremely well.

There is a tendency among "new" patients with less-well known or hard-to-diagnose conditions to be particularly talkative about them, especially early on. It's part of the search for knowledge, and part of the coping mechanism. I imagine, though, that makes such people pretty annoying to those with no particular health complaints--or with complaints that ARE well-known.

People have very different capacities for empathy, and one generally finds out just how different when one needs some empathy.

The saving grace, or the karmic balancing (if one thinks that way), does come eventually; almost everyone, unless they die suddenly in an accident or something like that, will eventually get SOME debilitating condition that will make them ramble on and sound just as boring and self-obsessed as we often do. When that happens, often such individuals learn something about the need for us to treat others with more validation. (I sometimes joke that lucky us just had to learn that sooner.)

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.

Good morning AussieDebbie and everyone

I put the smiley faces but really not feeling it this morning.

All the posts on here have been great and ranting does help all of us. My husband has had back issues for years. Epiderals for 15 years and then finally back surgery only to damage the 2 discs either above or below the surgery....can't remember which right now. He also has large fiber neuro, COPD and high blood pressure....doesn't go to the dr as needed. He is 6 years older than me, I'm 51, and the plan always was that he would either retire or go out on disability and I would be the one to keep working and have insurance. That was not a problem until I was laid off, hysterectomy, path report showed rare uterine cancer and then 6 rounds of chemo. A month later the SFN monster came into my life. Of course everyone was great during the cancer....lost all my hair so it was pretty obvious to everyone that something was wrong with me. My husband is very supportive when I'm totally 'down' which is often. But he constantly talks about how bad he is and still gets through it. I finally told him one day that maybe he can take the pain better than I can. I have told him numerous times how much I appreciate all he did during the years for me and the kids now that I know what kind of pain he must have been in. I always thought I understood his pain but I didn't really.

Going from chemo straight to severe SFN has not been easy on my family. They really didn't understand even though they are very supportive and loving. My 6 grandkids are the best and very loving to me. Why is it that children totally get it ? Bless their little hearts.....when I'm not up they always come in and hug me and ask how I'm feeling and if there is anything they can do for me. My 9 year old grandson will take out the trash, sweep and make my bed up without me asking. My almost 17 year old granddaughter will make a gallon of tea and clean up the kitchen. Like everyone else I look ok......before chemo I got up everyday and did my hair and makeup......during chemo I just didn't care......same now with SFN but they were all so use to me not doing my hair or makeup they never noticed I didn't start back. Most outings are to the dr and I try and make sure my hair (about 5 inches long now) is done but sometimes I don't even care and just brush it and go.

My mom now lives in an addition attached to my laundry room. She's been here since 3/1/14 and is settling in well. She tries very hard to understand what I'm going through but she doesn't get that I may feel ok one day but not the next. Some of you have probably read other posts where I said she looks at my feet and says "well they look good".....lol.....I didn't feel well yesterday.....I've only been at this a year but I'm starting to recognize when the all over hurt is coming. Which happened yesterday.....I pushed through because I've read on here that it really helps a lot of people. Guess I'm not one of them right now but I will continue to push. Had to medicate myself and hit the couch at 6:30 pm. My husband said I didn't hear phone calls or even my daughter coming in to borrow foil ! The couch is about 3 feet from the front door. Woke up at 1:20 am and went to bed and didn't hear the alarms at 6 am.

I absolutely HATE not knowing how I'll feel each morning. Will I get out of bed at 6 and take my meds and drink coffee or will I not know anything until 10:30 am when my mom comes over to 'piddle' with the dishes and laundry ?

I, like AussieDebbie, thank all of you that got through my post.

AussieDebbie.....I think a thread on how we're feeling, doing or just ranting would be great....I enjoy reading what everyone is going through but sometimes I just don't feel like 'fishing' out the threads.

Nice, slow rain in Georgia today. Got the window up behind me and after writing this I feel much better

Debi from Georgia

Thank you all for the wonderful support! I've read every word, twice!

I've always known my mother and I share a toxic relationship which stems back to my childhood. The sexual abuse started when I was 8yrs old, and she did used to tell me it was wrong and my job next time was to say "no" and stop him. It is true that he (my monster) was a soft man, I only had to yell at him and he would have stopped, but I didn't know that at the time.

When I was a teenager, one day while my mother was out he tried it again, and I lost it, big time. I cornered him in the laundry and got all my pent up anger out, spitting at his face, kicking him, swearing uncontrollably. He ran out of the house and we didn't see him for 2 weeks. When I found out he'd had a nervous breakdown, I was pleased, and hoped he would be institutionalized. But, he came home.

My mother told me that she stayed with him for financial reasons, so that my brother and I could have a private education, a roof over our heads, etc. I realize now, she was prostituting me for a 'good' lifestyle. I hated her for a long time when that realization hit. My 20's were motherless, she was just as bad as him for allowing it to continue, for keeping me in that situation.

Anyways, fast forward to about 15yrs ago, and I forgave her. Truly, and completely. Now, if I mention the past she gets all upset and tells me I'm punishing her. So, it's a taboo topic. Soon, my PN will be taboo also.

I realize now, just this moment as I write this. I am a MUCH stronger woman than my mother ever was.

There I go again!! Rant rant rant. I'm resisting the urge to delete what I just wrote, but I think it's good to leave it there, as it helps you guys understand me more I think.

Debi!! Ohhh there seem to be so many Debbie's on this board.

Debi, I am so very glad you were able to get that out and feel the relief too. Isn't it great!! It's so refreshing to just release it into the universe.

I don't think it would be so therapeutic if we were to write in a journal for nobody to see. Somehow, knowing that others who TRULY understand are reading my words, really helps. I know that I won't be judged by you all. I know I can write anything and will receive support in return, not judgement.

Thank you, thank you all for being so supportive. If one good thing has come of this horrible condition, it is that I've met you. If I wake up tomorrow and the miracle has come, and I no longer feel pain. I will still come here for a chat. Ohhh wouldn't that be nice! Bit of a dreamer, I am.

Ohhh and on the weather, it's the same here in Brisbane, Australia. Drizzly rain, twinkling down outside my window. It's so soothing to hear it on the roof. I'm lucky in that my roof is made of tin, so the rain drops sound amazing, soothing, relaxing. There is something about the rain that makes me feel.... safe. It's like I'm inside all warm and cozy, while outside is so miserable and wet.

"BUT her eyes completely glaze over if I even mention my pain just once so we never talk about it but I know first hand that its as boring as hell to healthy people."

Love the COMPLETELY GLAZED OVER LOOK Don't we all get that from someone at one time or another. Just makes me laugh....sorry if I shouldn't but the good Lord knows I needed a good laugh today.

If I talk to my 33 year old son about it I can tell he's somewhere else (being a narcotics officer doesn't help), God Bless him....he calls everyday numerous times to ask how I feel which I think is kinda funny too.....but my 29 year old daughter gets it. She has some issues of her own, nothing deadly just annoying, so she listens to me and I listen to her.

Loving the conversation

Debi from Georgia

How I can relate. No family will read any of these posts. I suffer chronic back and left arm pain, I have PN, fibromyalgia, compromised immune system, a dodgy bowel, C5/6 degenerating, thoracic compression fractures to T3,4,5&6 and it is crumbling, had 3 lumbar spine fusions, last one now called failed back surgery syndrome..., had an SCS implant and had problems with the implant, have had a number of RFA's, FJI's, disc injections and nerve blocks and they are now exploring doing another fusion to L2/3... And my mum says, oh well I would have thought you would be better now. She continually asks me to go out to restaurants or for coffee despite knowing I no longer earn an income and am uncomfortable to sit for any longer than 15 minutes in any chair...

My brother beat me up at age 16, I was 10 days out of hospital from my first spinal fusion, I was saved by his "friend" who stepped in and pulled him off me, while my brothers girlfriend screamed at him saying leave him alone leave him alone... My friend who was 15 and I escaped returning together when mum was home from work to tell her what had happened. my mum asked my brother and his girlfriend and he said no I didn't and his girlfriend (now wife) said he didn't lay a finger on me. My brothers friend had left the house and I didn't ask where he was. Mum told me I was telling lies and would listen no further. Fortunately dad got home and I told him what happened and raised my shirt to show the evidence as my back brace was damaged in the incident. Dad confronted my brother and he admitted yes he did hit me and throw me against the wall. I was so upset my mum didn't believe me I asked permission to spend the night at my friends house. Unbeknown to us, my brothers "friend" followed us to his house and at 11pm knocked on the front door, it was school holidays and his parents were away. We opened the door and in the dim light seeing it was my brothers "friend" who had earlier saved me we allowed him to enter the house.

Well, I can hear you all saying what, why, how.. My male friend was /is gay, his parents and my parents always assumed when we were together we were safe and it was obvious to all there was no hanky panky going on. My brothers friend had changed his appearance slightly which became more apparent once he was indoors in the light and the front door locked behind him, he had added to his clothing a leather jacket patched with a well known bikie logo, leather gloves with the fingers removed and knuckle dusters on his fingers. He had on heavy scuffed leather boots and held what looked like a dogs choker chain swinging from his hands. My friend and I gathered in the laundry hugging each other in sheer terror, I was still recovering from my 13 week stint in hospital, my spine fusion and was painfully thin and a small person to boot. We were coerced out of the laundry with the threat if I didn't come out my friend would pay for it, both dragged to the bedroom and locked in. Ironically the windows with security screens to keep people out prevented us from escaping. Minutes passed, our terror grew. Then the lights went out, the fuse box opened and the power turned off. The bedroom door slowly opened my friend fainted and what followed was tortuously slow and I took my mind to another place....

The next morning we, my friend and I ran to my parents house to say what had happened. Mum, I learned had met my brothers friend while he was neatly dressed, he had apparently had dinner there the night previously. Dad had already left for work, my brother and his girlfriend were flying back to Sydney that day and mum was in a mood to not listen again. She told me I had caused enough trouble the day before with my accusations and she had met my brothers friend and he was a perfectly decent man... On no account was I to upset my brother or tell my father and worry him. Once again not believed. Her explanation, my brother was in the airforce and no way would he associate with a bikie. Lol, my angry brother who had a girlfriend whose brother was a bikie and locked up in prison for 20 years... Oh well, my mind went to another place, I blotted it out, time passed and I travelled away had 2 breakdowns by the time I was 21 and hospitalised (much to mums shame). More time passed and I moved away further to eventually leave the country and only see mum on holidays. I had a bad car accident and finally returned home, then dad died and it all came flooding back I don't know why. I've had help, I accept it happened and nothing can change it. My brother got very angry when the subject was raised, his wife totally cracked it, my mother cried. I know she feels the guilt, but doesn't like to admit, accept or own that she let me down. My sister believes.

Like you, I try to get on with things and I really did, I had a highly successful career and worked hard living a wonderful life. It all came crashing to a halt in 2012 with yet another broken back and I'm trying hard now to get some fixes and get back into the workplace.

I feel for you and what you had to endure as a child, you were let down so badly. Those things that happened to us made us strong though. Having dealt with mental anguish for so long, it's prepared us to deal with physical pain, yes there are days when we have our pity pot out and we stoke it, but more often than not we grit our teeth and get on with it. When we make the effort to wear makeup to "look" good and make ourselves feel good. People mistake that for us feeling better. I can't be bothered to correct them, I hate talking about being in pain, no-one is going to believe me anyway....

There is a thread on NT called "this is just a place to vent". It's on the SCS forum and a lovely lady does exactly that. Perhaps we could join her and post our vents there, it is cathartic to write things out, I know, I've done it a few times now here and there on various threads and apologised to other users. I even got round to apologising for "fluffing" but, getting these things out and sharing is a huge part of healing. There is also a thread dedicated to "fluff" thanks to one of our fellow SCS forum NT users and we could also use that thread to vent... I do feel the release that comes after I've got things out of my head and I really do think it's an important part of our healing. Wherever we write our stories and whenever we write our stories, it's good for us. Holding on like "holding in wind" only makes you uncomfortable.

Feel understood, people on this site get you. I hope you find pain relief and can be as well as you can be.

You know how sometimes when you are feeling sorry for yourself, then read of others who have it so very much worse, and it puts it all into perspective?

I just had one of those moments, after reading what you, Pamela, just shared. I am grateful for your honesty, astounded by your bravery, and empowered by hearing your story.

Thank you for trusting in myself and others here with such a personal story. And thank you for gently, tactfully leading me and perhaps others to a more appropriate forum to discuss things more openly.

I don't mean to trivialise my story in saying yours put it in perspective. Every case of childhood abuse is a tragedy. But, you suffered abuse on top of physical injuries and pain. The strength it has taken to survive and reach adulthood with your obvious gentle caring nature is what I admire about you most. They didn't break your soul. Good on you! You inspire me.