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.

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.

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! '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?

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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.

........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 :-(