Easy to pass judgement when you are heathy.
 

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.

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.

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.

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! :hug:

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!

Sorry about your mom
 

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

I'm Sorry
 

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

Do not worry--
 

--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.

I like this thread :)
 

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. :)

OMG (Oh My Gosh) lol
 

"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

Oh my
 

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.:hug:

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. :hug:

Pamela
 

DITTO FOR ME !!

Debi from Georgia

Thank you friends for your support, this is the first time I have ever put it on paper. Too both Debi and Debbie, we have all endured, my story no worse than yours, I cry when I read yours and see how strong you are. Please don't misunderstand me, no gentle redirection intended. It was just a thought that occurred to me as it was mentioned earlier a thread for letting it all out would be good and I thought what a good idea and realised these two threads in existence could be just the place. Eva who began this a place to vent has endured similar experiences to ours and much more. I read her posts and marvel had her endurance and her tenacity. She draws on prayer, letting it out and NT support I'm sure.