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.

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.

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.)

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