This is a rant, perhaps like a journal entry for me. It's safe to write here, for my family will never come here to this forum. So, I do not necessarily expect others to read it, it's therapy for me to get this out, as it's been poisonong me all week.

I visited my mother on the weekend. She is the matriarch of the family, and is very opinionated. When she gives advice it's expected to be taken. She will tell you it's just advice and she doesn't care either way, but if you go against her advice, one day it will come back to haunt you. I'm sure you have all known someone similar in your lives.

Over the years I've not visited my mother as often as a good daughter should. Reason being that I leave her place mentally exhausted from all the criticisms and judgements. The tone she uses with me often leaves me feeling deflated and like I've been a naughty child.

Well this weekend she decided to corner me about my job. I work part time, and in her opinion should work longer hours. When I explained that my pain was severe enough that I can barely stand the hours I current work, she told me to get a more positive attitude. She said that every time she sees me all I want to talk about is my health, tests I've had, etc. She told me to talk of more enjoyable topics please. That I was bringing the mood down. She said that if I keep telling myself I'm sick I'm going to talk my body into believing it. This turned into a lecture about mind over matter, and how my negativity was making me believe it.

This really made me sad. I had no idea I'd been speaking obsessively about my illness. Genuinely, I'd made a conscious effort not to chat about my condition unless asked about it. Also, it hit me that she had no idea how bad things truly are for me.

When she persisted with the idea of me giving up the part time work, which I love by the way, to search for a 'better' job, I almost broke down in tears. I asked her to imagine a toothache that never let up. Now imagine the Dentist kept telling you that he could see nothing, that X-rays showed no sign of decay. The tooth according to him was perfectly healthy. Now imagine this occuring in a number of teeth, 24/7. She then took a moment, and understood, I hope!

No doubt she will forget and pester me again in future. I can tell that it frustrates her that she can't help me. Perhaps that is why she would rather not speak of it often. This is something she cannot control. It's happening to me, not her.

I just wish this illness was more publically known. If I had Cancer the family would let me be sick. If I had MS the family would let me be sick. But because its invisible and not well known, I'm to behave normally, no I can't be sick!

It frustrates me to no end. My family are supposed to be the ones who smother me with love and hugs if I get a common cold, yet I suffer this pain and there is little understanding. Perhaps this is my perception. Maybe I am driving them nuts, and need to shut up.

I feel evil in my soul. Sometimes, like when my mother put forward the idea of me working longer hours, I wish she would get a good taste of neuropathy herself. Only for a week. Long enough that she will never forget the pain I suffer on a daily basis. It's horrible to wish this on others, and for that I feel ashamed.

Anyway, if you have read all this, thank you for sticking it out to the end.

It's simply the rankings of a woman in pain. Nothing we haven't seen on these forums before. Lol

I love my mother, but felt the need to get this out. It's not her fault, it's the pain's fault. It's ruining my life, and I guess now I know it's ruining others around me too.

Felt many of the same feelings. My wife is awesome and supportive and can tell I am in pain and spents alot of time rubbing my feet. I do wish that some of my co-workers could experience nueropathy just so they would get off my back. Its really hard not to spend alot of time talking about it and always thinking about it when its always there.

I think part of it may be though that she is worried about you and can't do anything to help you. So not hearing about it makes her feel better cause maybe your doing better? Might not be the case but just a thought. This is how it seems to be with my parents although my Dad is a little bit more understanding since he has experienced a few months of nueropathy from medicine that lucky for him went away.

Thank you all for your thoughts.
I wrote that last night when I was having trouble sleeping, it's been annoying me that much and getting it out is like a big deep breath. Start fresh today.

Yes, I think this might be the case. I'm a survivor of childhood sexual abuse (a stepfather, my mother knew but convinced herself I was exadurating). Years ago my mother told me that every time she sees me the abuse is all we talk about. Actually, I'm pretty sure that she started that conversation most often, but the result was I stopped mentioning it completely. We never speak of it now. Now it feels like history repeating to be honest! Once again, something that is happening to me is not to be spoken of. *sigh*

Thank you Hopeful. It certainly does feel much better now. Although, part of me is scared now that she will come here and read what I wrote and oust me from the family or something. It's funny how paranoia kicks in. In fact, I was so paranoid last night that I left a LOT out. I truly went to town on her, letting a lot of stuff out, then went back and deleted big chunks. Just getting it out was therapeutic enough, deleting it was almost like wiping away the hurt. So all's good.


Ohhhh yes! This! I can so relate to this. I also care for appearance, so much so that outwardly I look great, healthy. It's an illusion, a mask I wear to hide my broken self. I look around sometimes, and wonder if other ladies my age and older who are immaculately groomed are hiding something. Funny enough, more often than not, if I give them the opportunity to speak of themselves, something comes out, some hidden health problem, or mental anguish. I guess what I've learned from this for myself is never to judge a book by it's cover. Yep, I know it's an old saying, but recently it's taken on a whole new meaning.

Thank you for your thoughts.



Thank you so much for sharing this. My hubby is the same. I think at first he was fine with my whining and carrying on, but it's gotten old. He comes home from a mentally challenging day at work and the last thing he needs is a home that isn't a safe haven to relax and unwind. He doesn't need to hear my problems. That doesn't mean he's selfish, in fact he's the most supportive in all this. He takes a LOT from me. I don't show my appreciation often enough.

I will need to make a conscious effort to avoid talking about my pain unless it's imperative. I needed to hear what you wrote, thanks so much!

Just had a thought.

Getting that poison out last night really did me a world of good. I've woken with a new look on the day, a fresh start.

It felt like a journal entry that was unable to be made on paper for fear of hurting someone who might find it.

Would it be an idea, if those of us who would like to, make our own diary page here on these forums, and whenever we need to rant and rave and scream, we come to our post and add to it. Others then get to read back if they wish, to gain a better understanding of what is going on. It would be like an online diary. One where only those who truly understand can write support, or simply read and send a simple "hug" to let us know they have read and support us.

Last night's post really did feel therapeutic, it would be nice if I had a thread of my own to come to when feeling extra down. I'm sure some would rather not start a whole new post each time they are having a bad day, but to have one thread that is ongoing, would be a little place to write, each day, or once in a while, whenever.

Just an idea.

Aussie,
It's good you came and got your feelings out. Holding it in only makes our pain worse. It sounds like when you describe it as a constant toothache your mother got it. I hope she continues being more understanding.

I also wish this disease was more widely known and understood by others. It is actually a blessing and a curse that the disease is not visible.

I hope you feel better!
Hopeful

hi AussiDebbie

I think you using the descrption of a tooth ache was very good! That is something that many people can relate to.
Also, I agree with you that it is so hopelessly painful this situation that the dicease is so little known, and no good cure.
Yes, when we compare to cancers,MS and all thecronic ill nesses, we do not get the same understanding.
And, for example, a broken leg, gallbladder surgery and all of the condition that can be easily fixed, we can not compare.
I think I know exactly how you are feeling.
I have often gotten the comment: " but you have had so many tests" or --" you have had all the tests, you have seen all the doctors"
Or: " you look so good! " Well, that is good to get a compliment. ( but they do not know how I am in pain later on in the day!!!!!) I usually try to care for my self well, and care about my appearance.

Any way, AussiDebbie, we have good days and bad days! Sometimes we feel hurted.
I think I know a little how you feel. I hope you and your mother have a better visit the next time.

"That I was bringing the mood down. She said that if I keep telling myself I'm sick I'm going to talk my body into believing it. This turned into a lecture about mind over matter, and how my negativity was making me believe it."

Thats exactly how I spoke to my late mother about her fibro when I was healthy and now it has come back to bite me big time, call it karma if you like.

My GF has watched me go through this from day one and knows its real and is very supportive 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.

I dont think your mom is a bad person, she just doesnt get it.

"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.