just need to vent...
 

well, PN is not what I wish to myself in early days. I didn't even know what it is - as many doctors don't know yet. And this is one of my big problem (and I'm sure I'm not alone). I have all these regular symptoms of PN and from time to time I share them with my primary doctor. She looks at me and said that I'm hysteric and panic. She said that I'm sort of imagining the symptoms since I did the skin biopsy (which was positive for SFN) and because I know the results - I have these sensations. She said that so many people have various symptoms but not everyone goes to do skin biopsy.
Also - my husband - he doesn't react as someone who believe me. all he says is that I have to do all sort of sport as walking, running ect. and I'll feel better.
But I have all these pains that caused me to be tired.
I feel so lonely.
Only lately my psycologist changed her attitude towards me.
I know that I have to be happy and live the day...

Need hug from you

Here is your hug: :hug:

But I have to say, anyone with a chronic pain issue, has to learn to focus elsewhere in order to have any quality of life.

The more you pay attention to the pain, the more it will become a fixed response and constantly torture you. Only you can change your perception of your situation. I strongly advise self hypnosis as an option to learn to dissociate from your troubling bodily sensations.

I focus on my family, pets, and hobbies, to minimize the pain I have. It does not "go away" but becomes bearable. Everyone has some bodily challenge. It might be epilepsy, a closed head injury, arthritis, MS, MG, cancer or whatever. Just read our other boards and see how many people are struggling every day with something.

I have to be blunt here. You don't have to convince others of your discomfort. I don't discuss my pain anyone anymore. No one wants to hear it. They have their own troubles. And in the same vein, they are not responsible for your pain either. Take it one day at a time, and do things you enjoy doing. I personally enjoy growing things, seeing them start from tiny seeds and becoming beautiful flowers. So that is one way, I keep my focus away from my slowing deteriorating body. I can't bowl anymore, I can't play tennis or racketball anymore, I can't stand on ladders anymore, but there are other things I can still do and enjoy. My house is more scattered and cluttered because I don't have the energy to keep it perfectly anymore, but hubby doesn't mind. So that stressor is less for me too.

You have to prioritize you life, and only you can do that.
Ask your psychologist to give you EMDR, that can help with anxiety. Also have her teach you self hypnosis. Those skills can help you cope. :hug::hug:

Here is your hug from me...( :hug: )


now, as MRSD said, but without her wonderful sense of civility and tact .....here is what else you need....

A kick in the behind.....:o

You can not focus on this disease....you MUST, absolutely MUST distract yourself.

We all go thru periods of wallowing....I have. I still do. But nothing is as helpful as distraction....I too focus on my children, grandchildren, my small farm, my pets...and I am mindful that I can only inflict so much misery on my husband before he tells me to 'take a hike' and not in the literal sense.

Suffering is draining to others. It multiplies itself. It rubs off on others, even psychotherapists.

Here is another hug ( )....and a cold compress for where I kicked your butt:hug:....You can get thru this!

many thanks
 

First, for the need to open the dictionary for the new words.

And second - this is exactly what I need. - guideline for how to behave with the new situation.
I'm trying not to focus on my pains (I don't like to use the word - illness).
But from time to time - I need those people who understand me. And you are those people.
I can get any "kick off" from you - because - you know what I'm talking about. you are there - more or less.And - what I'm telling myself is that if you can - I can also.

continue to challange me with new words in English. this can be the benefit of my PN...:wink::Thanx:

[QUOTE=amit;656678]well, PN is not what I wish to myself in early days.

*** Yeah, neither did I. Last summer I took a wonderful class on pain management skills. By the time we were finished, there were over 200 different activities I could do if I wanted to try and lower my pain. There are 4 or 5 I can use and they will lower it at least half a point. But I have to do them.

*** Another way I look at it is -- my disabling pain doesn't really begin until 3 or 4 in the pm. "Disabling" in the sense I cannot do my usual work. But there are many other things I can still do, so I am grateful for the fact I can do my work until 3. There are lots who have PN who cannot.

*** Attitude is important. There is a practice called "mindfulness". I don't necessarily practice it in the manner you might read about it, but it means staying present in the moment. And while the moment might involve pain, if I pay too much attention to the pain I will miss all the other things going on in my life.

http://en.wikipedia.org/wiki/Mindfulness_%28Buddhism%29

*** But also I sometimes have days when I just feel sorry for myself. I don't dwell too long on it, but the combination of high pain and having to still deal with stressors, well, it gets to be too much and I just feel bad. But not for more than 10 minutes.

*** Plus I've found this is a safe place to let down. You-all understand me in ways my wife never will, so this is where I would come to whine if I need to.

Cowboy

When I come in here to whine, vent or otherwise express my displeasure at having this condition....

I expect a hug, too....and a kick in the butt, as well.

This is a wretched disease for all its prevalence, is totally shoved under the rug. I would think for all the misery it causes, it would be heavily researched.

Alas, we are left to our own devices....such as kicks in the behind.:grouphug:

*** What is your native language? Can you tell us a bit more about yourself?

Cowboy

Yeah,...........mee tooo !!
No one really understands, but when all those around me are
expecting me to be 'normal' and I feel that I just can't go on -
I have to say....... 'enough!! I'm hurting and just can't do it. I have to rest'
Then......

I pick myself up,
dust myself off,
& start all over again !!

(deedle dum de deedle dee dee.....
-Barum-Bump !!)

Hi Cyclelops,
I think I needed the kick you gave me the other day when you replied to me on the Sjogrens thread. You said I might never know what is causing my SFN. As a nurse that is difficult to except. I live my life working with cause and effect. But I am working on the acceptancepart.
I am waiting on the labs for the Sjogrens but in the meantime had a discussion with my husband last night. We decided not Jump on the band wagon unless the results from the testing are absolute.
Do you also have RA symptoms with your SFN? I am beginning to.
You are right no one understands what this is like. I was whining to my husband last night. Every now and then I lose it but I think I do pretty good.
Mrs. D is definitely right. We need to distract ourself from our pain. I work full time. No longer in hosptial but I am so happy to have my job. Yes I am exhausted by 3. I go home maybe do some laundry or something but I'm not really good after that. While I am in work. I don't think to much about the pain. Only a few select people in work know I have SFN. I do everything I can not to complain to them.
I have my kids and a 1 year old granddaughter. Talk about a distraction my husband says he never sees me happier than when she is around. Trying to keep up with a baby will distract you.

Thanks for the advise,
Thanks to everyone on this site. I don't write much but I read everyday. As I'm sure you all know it really helps to know you are not the only one and there is somewhere to turn.
Hopeful
:grouphug:

Hope,

I have the full gamut of autoimmune stuff. :girl(sad): In 3 years, I have torn both rotator cuffs, gotten bursitis in both hips, so many times the ortho wants to remove the bursae..(no way). :Hum: Oh, and a few bones are eroding....not to mention joint deformity. I don't have RA tho.

I have diffuse esophageal spasm, AND nutcracker esophagus on occassion. I have arrhythmias and structural cardiac issues (but apparently not life threatening-and I assume we all have some stuff that is as they say around here, 'cattywompus'.)

Most of my teeth are crowns....I had punctal plugs until something happened and I developed a cavernous nasolacrimal duct that can be played like a bagpipe by pushing on my eyelid. :boy(music): That may be due to my car accident 20 years ago and the suspected lafort fracture that they never found....hmm. My bili is high, and I am watching my bmp these days for kidney stuff.

Oh, sing an ode to autoimmunity....:sing:

All that said....nothing causes as much misery as SFN. That and my two herniated discs....ugh.

Back in the olden days, they would say, 'My rheumatism is bothering me'....and that would be enough. I am content these days to say I have an autoimmune disease or connective tissue disease with neuropathy.

On children, I just got news that one of my kids is moving back in with us temporarily, with her 2year old.....oh boy. Come Fall I will be caring for my 1 year old grandson, when his mom deploys....oh boy. If grandkids make one happy, I ought to be in 7th heaven....or 6 feet under (just kidding-I plan on living in an urn after I depart this world anyway.):Girl(angel-flying):

I was a nurse before I became a farmer....I like being a farmer better.:Cowgirl: I don't have to think much when digging in dirt. I can wear my ipod. I don't have to worry about sterile technique. I work with animal manure, which for some reason is more pallatable than the human variety. And I don't have to call doctors. Note, my chickens just learned to fly, and somehow, this time when I counted them....there is an extra one....I still have no explanation for it. I have 6 rhode island reds, and I ordered 5. I have a grand total of 17 chicks. Now I need one more name! I busy myself with trivia which I can make seem important...like naming a chicken. It makes me forget I hurt all over and can't take another pain pill for 2 hours.

It is always a shock when we get neuropathy. I would be lying if I didn't say, 'why me?'. But the fact is, it IS me....can't change that. There seems to be no real clear causation even when one IS diagnosed with another disease. And there is no more disarray in any field than rheumatology. You can get a new diagnosis every week! I believed if I could find a cause, then we could treat that cause and voila, stop the neuropathy. Hmm, so far, that hasn't panned out the way I planned.

I can tell you that the more I have wailed the more people stay away, so, I have learned by experience, like many others, to reply, "I'm fine" when any one asks about my welfare.

I keep telling myself that is true...because in the long run, what is important, is that we believe we will be ok.....it is just a different kind of ok.

Well you have given me the kick in the behind that I needed, being from Down Under I am behind (actually ahead) so I do not see these posts until I wake up in the morning if I go online then or in the afternoon. I keep this( my PN) to myself because my family does not really want to know, they all think I just have a bad back. Thanks for your posts they were truly inspiring.:grouphug:

I don't wail anymore, but some days, I just say, "I have to go flat for awhile", which means I am going to lie down for an hour or more - family has learned to accept that I need this either for my c spine or pn and no one grouses. The timeout can work wonders, especially if you have an ipod or mp3 with some of your favorite music.

Just an idea.

You just have to tilt your head and LOOK at things different?
 

As Cy so eloquently put it, yes, we MISS who we WERE, but? WE ARE what we are now. If'n it were me? I'd call that last 'found' chick BONUS!
Now, you too have found a truckload of lemons in your front yard! What to do? Make lemon juice! THEN turn it into lemonade or better! Who's got the best apt SAFE sugar substitute of the day? THEN SELL IT!
First off when you get such awfulness, you ask yourself WHY ME? Well? Duh? WHY NOT! It's merely an unscheduled luck of the genetic and physical draw that YOU Got Lucky?
Yes, you have to mourn your past self! If you don't you can't learn to deal with what you have or might have in the future. There is a different future that you can make for yourself!
Yes! You have to fight for good diagnosis and then learn to deal with all the unknowns of even a great diagnosis! Then, get on with your life, allowing yourself some periods of 'grace' but also the butt kicks to yourself when needed!
Do allow that there will be good and not so good days. Also that the not good days always occur when you want to have fun. Also that for perversity's sake you will be having a good day when seeing a doc [durn it!].
Learn and become smarter than your docs! [Tho don't let on rite away? Just ask 'smart-stupid questions!'] Keep them on their toes that they aren't 'Doctor God' and that they are THERE to HELP YOU!!!!!! Make them work at it, challenge them, and you will gain respect!

So for all who have given you on-target and great advice? And for you too! HERE! :hug::hug::hug::hug::hug::hug::hug::hug::hug::hug: :hug::hug::hug:'s Is that enuf to go around? If not I can click on more! Just wish I had a big dog w/a wet sloppy tongue to slather you all with the best happy dog kisses possible! - Keep faith and hope and heart! Without it we aren't human. - j

you mean like this?

about me
 

I usually speak Hebrew...
I have SFN for almost 5 years, probably toxic.

I would like ti write more - but I don't know what...

Hi,
I think I just had a light bulb moment. The part you said about mourning your old self. I think I have not even begun to mourn my past self. I have had SFN for 2 years now. Probably a lot longer if I really look back but bad for two years. I have been so busy trying to find the reason that I have refused to believe that I am not going to wake up some day and me myself again.
I might cry and say why me every now and then but have never cried in mourning, just frustration. I find myself longing for the girl who spent 4-6 days a week for 2 hours at the gym. I don't want to sound vain because I am anything but, I miss my athletic look. I miss being able to run 5 miles a day. I miss the fact that my daughters couldn't keep up with me. (sorry dealing with SNF and getting older at the same time)
Emotionally, I have always been the rock for my husband and 3 kids now I believe myself to be the weak link. They are trying to take care of me. I won't let anyone but my husband. On a good note we have never been so close. My daughter said possibly this was Gods reason for all this. I had one foot out the door before this happened.
How do you do it. How do you make yourself accept that your not coming out of this the same person you were. Your life will never be the same. Does it come with time. I tried a therapist she was terrible.
I hope this doesn't sound like I am depressed most of the time because I am not. I actually am happy more days than not. I think the light bulb of mourning my old self just started me thinking. First time I admitted to myself that I am not coming back. Part of me knows it is true the other part is still screaming stop talking like that.
Thanks for listening, I wish they had a smiley face with a light bulb over it!:)
hopeful

I think we all need to let go of our past life and start a new chapter, taking one day at a time. I think we learn a lot from sharing our stories, knowing we are not alone in this battle with PN.:circlelove::circlelove::circlelove:

........I think I just had a light bulb moment.........

Aha!! Epiphany (sp?) !!
Acceptance of the fact that........ (you fill in the blanks)
And then get on with our lives.
We've got a lot to do, yet.
We just sometimes don't know how to get there,
but that's not exclusive with PN !!

Hope-I still dress up in my running or cycling gear and pretend....I KNOW what you mean. I had always figured I would run a half marathon or something with my girls as I got older.

I look at it all as a circle....I was stronger then them, now they are stronger than me. I was quicker, more protective, wiser....and now, well.....perhaps I have a bit more money, lol.

Yes, you DO have to mourn. You DO have to move onto things you can handle without major discomfort....but you DO have to keep pushing. It is a balancing act, mental and physical.

If you can't run, can you bike or swim? Always ask yourself if there is an alternative way to do an activity. For me, the trekking poles make walking better.

Yet, some days are bad days....and I just have to accept that and cut myself some slack.

Yep, this disease by any name, sux.

[QUOTE=hopeful;657169]Hi,
I think I just had a light bulb moment. The part you said about mourning your old self. I think I have not even begun to mourn my past self.

*** Exactly. Over the last 9 months my mother's dementia has progressed to the point that she is now living separately from her husband of 63 years in a secure Memory Unit. I couldn't understand why I was suddenly impatient and angry more often. A quick visit to my therapist put it in focus. I'm already in traditional grief over her loss -- even though she's still here in some form. And perhaps the intensified experience with Kaiser is forcing me to begin to accept what I have lost. Trouble is, when I begin to do that out loud -- it sounds a lot like whining.

*** Here -- I think it is safe to whine and mourn.

*** I'm sorry for your loss :-(

[QUOTE=cyclelops;657258]Hope-I still dress up in my running or cycling gear and pretend....I KNOW what you mean. I had always figured I would run a half marathon or something with my girls as I got older.

*** In summer I always wish I could put on my umpire's gear and call one last game... baseball, softball (in winter I loved to officiate basketball -- I got to the level where I called local college women's games)



Yes, you DO have to mourn. You DO have to move onto things you can handle without major discomfort...

*** I'm forever grateful to my wife for taking me to aqua-aerobics; now I'm an qua-aerobics "BEAST"... plus I can become the smart-*** class clown.


CB

[QUOTE=rscowboy2005;657306]That gives me hope. As soon as I am feeling better I need to start something new. My kids and husband brought me an eliptical for my birthday. (I asked for it) but I tried it twice and because I could only do 5 mins I haven't been on again. I have had a lot of pain lately but I am going to try again when it eases up. Thanks!:)

Yes, you should mourn, then what?
 

That's what I meant about recognizing yourself as 'different' now. There are limits on what you can do or not? But the brain still works...put it to WORK! Simply DO things, or some them differently.
If needed, learn about 'advocacy' on any level you want. Also learning here is important about what we have and what we do about it and how we cope..helps US deal with doctors of all sorts! We must deal with them, so should try and play their game on their playing field-only knowledge can help us there. We must come to terms with the pain, then do the very best we can to either ease it or deal with it! Those are the better options than being miserable and self-asorbed in the misery of if all. And this is a miserable and self-asorbing type of pain!
Doing things that take your mind off of the pain is helpful, as is trying to improve daily, no matter how slowly it goes. Then? Try doing something to help others in your area, those who need help more than you do? There must be lots of ways to help? Just look at your local United Way and see all the orgs that rely on volunteers. Even county governments [or city ones] often seek voluteers for a whole slew of things....things we CAN DO!
Just because we can't DO some things? Doesn't mean we can't do other useful and productive things...maybe just on terms we can deal with better tho. :hug::hug::hug::hug::hug::hug::hug::hug:!'s - j

5 stages of grief
 

Denial
Anger
Bargaining
Depression
Acceptance

Although I studied this over 30 years ago, it still applies. I guess I am at the depression stage right now. Not quite accepting yet.

That's OK...
 

Lots on your plate, some of it hard to chew and digest?
Give it time and give yourself some charity to allow yourself the time!
BIG :hug:! - j

Hi,
Your right it does sux. One thing I think I need to do is cut myself some slack. I got up in horrible pain today probably the worse yet. Felt like it was in my muscles and bones. I was up a lot last night with hip and leg pain.
However, I started my own little farm today. I've only planted tomatoes in the past.

Today we planted tomatoes, sweet potatoes, sweet peppers, cucumbers, strawberries, cantaloupes, squash, zucchini and we are even trying corn.
I am excited. I hope everything makes it. Did you name the chicken yet?
Hopeful:)

I think I am bouncing back and forth. I think this site has begun to help me come out of denial. I think dalhek is right we need to give ourselves a break. Everyone goes through these stages differently. We just all need to be careful we don't get caught up in the depression stage.
My mom tells me that I do deserve to have a pity party every now and then but she doesn't let me stay there more than one day.
My prayer for all of us is that we get to the acceptance stage. :grouphug:

Hi I can relate to many of the feelings here and I am sorry everyone has to face them. For myself I feel the past 3 years I have went through many changes in how I face this condition and the people/things that impact me. It is like a learning process in what works and does not. I have for sure and continue to go through the stages of emotions. A big thing I work on daily is to stay in the day of what I can do to get through it in the healthiest way. As for family and friends at many times I feel unheard and alone. I try to focus on the people who do understand in the ways they can. I have some family members like my gramps for example who blames me for my pain that I have had to separate from. I don't have the mental strength to constantly fight with people or explain why I can't do something. It takes all my mental energy to fight through the pain. I see where when I get upset with people or life issues that I don't tolerate my pain as well. Being calm is very important. I know for myself I will never be able to do what I did in terms of being active and I have learned to accept that and hope to find new things in the future I can do. The more I focus on the can't the more I feel down and the harder it is to fight. My pain doctor said something to me I found so helpful that on the bad pain days you do the best you can and on the better pain days you do the most you can. That one has to find a new way of living and doing things in the condition we face.
Hopeful and anyone else with trying to increase activity. When I first came to this board I was in bed full days from pain. When my doc said you must move or you will atrophy it was torture getting on my feet again. Anyhow I did start with increasing by 5 min at a time or even 2 min each week. So hopeful though at this time you can only do 5 min setting small goals for each week or each month I think gives the body time to adjust and also makes one feel proactive. Wishing everyone a better day

Thanks for your encouragement!
Hopeful

Venting and mourning are both healthy--if directed.
 

Directed? By learning what you are mourning and venting about! Of Course!
We all suffer PAIN! There is no question about that, and, doctors don't even have good, consistent definitions of what pain IS or the degrees of pain we have! That said? Venting/Mourning here is safe [as long as doc doesn't know your e-mail or 'name' on line?] And it is with folks who understand what it is to have IT, have IT constantly, and have IT NOT go away. Ok, well, there are 'times' when it's less SO than others, but for the most part? Unless you work to take your mind off of it? IT IS THERE AND ALWAYS THERE! :eek: :Sinking: It feels like we are in a leaky boat? But we are together sort of in a leaky boat!
Beyond the mourning phases tho is an BIGGIE? That is: WHAT NEXT? Up to you and only you!
Face it, we are NOT fun folks to be around when we're hurtin'! Folks now ask me 'How am I doing?'-I just reply... OK, all things considered! and leave it at that! Too many people can't relate to the pain unless or until THEY get it-then, you will be the first person they call! Learn to talk short, concise and sweet with the facts and realities. Start practicing on your docs? New docs always need 'orientation'. Best to perfect descriptions BEFORE you need to go to the ER? Those guys have REALLY SHORT ATTENTION SPANS! Pack as much info into 45 SECONDS [yep, seconds] as you can! It could save your life!
For an exit? Web up Mary Chapin Carpenter's two songs: I feel Lucky & The Bug! Hopefully we are beneficiaries of lucky things and not splats! :OuttaHere:
Of course, the beyond allotted quota of hugs all around! :grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug: We are GOOD as a collective mind? Aren't we? But we are the sum of our parts! - j