[AussieDebbie]

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.

[Lewie]

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.

[hopeful]

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

[Synnove]

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.

[zorro1]

"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.

[AussieDebbie]

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.

Originally Posted by Lewie

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?

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*

Originally Posted by hopeful

Aussie,
It's good you came and got your feelings out. Holding it in only makes our pain worse. I hope you feel better!
Hopeful

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.

Originally Posted by Synnove

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.

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.

Originally Posted by zorro1

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 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!

[AussieDebbie]

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.

[Hopeless]

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.

[Stacy2012]

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!

[zorro1]

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!