Being

[pianogal]

Sunil, that is awesome! Actually what you're saying is what's made survival so much easier for me. I have learned to let go somewhat and enjoy the good parts of my life because even though I have pain, I still have good parts of my life, and I can choose which to focus on. Watching comedies, laughing with my daughter, eating good food, decorating, making music.... being grateful.... expecting less of life and myself.... all of this has made being patient in the pain so much easier. It's always that pain is highest in the struggle for relief... and on some days I pretend I have no pain (even though I do) and just live like a semi-normal being as much as I can... and those days are easier on me emotionally. Emotions are such a big part of this.

I wrote and recorded a song about this issue... and I'll post it here if you promise not to let anyone know who I am ... as I try to keep this side of myself (pne) separate from the public side of myself. here's a link to the song, it will be active for one week: https://www.yousendit.com/download/T2pG ... b0pFQlE9PQ

[HerMajesty]

Sunil, I have a story about the most wonderful part of pain, which is that we cannot remember pain.
When I was 15 and had not yet learned to manage my interstitial cystitis well, I went with a boyfriend and some other friends to a Pink Floyd concert. I don't know if anyone here is into Pink Floyd but nobody could put on a concert like they could. The band broke up soon afterwards and I never would have had another chance to see them.
We got there a few hours early to secure good parking by the stadium, had lunch nearby, hung out a bit. I was in a horrible amount of pain and experiencing bladder spasms and severe urgency. We went to some diner and while everybody else ate I spent an hour in their freezing, dirty bathroom dribbling urine and wanting to die. Once we got into the stadium I had to run to that crowded, filthy bathroom repeatedly. I am sure I was horrible, miserable company the whole time.
The show was amazing. There was not assigned seating, just a huge open football stadium. We managed to get right up front in the beginning, where we were so crushed by people that we couldn't move. The second half we watched the light show from back in the bleachers.
Fast forward a few years, I have learned to manage my interstitial cystitis, am in no pain, and PNE is in my distant future. My husband and I have a double date dinner with the ex boyfriend. I start reminiscing about the Floyd show and how amazing it was, and how glad I am that I got to see them before the band broke up, etc, etc. My ex BF looks at me like I have 3 heads. "You had a horrible time at that concert, you were miserable the whole time", he says. That is when I realize, hey I guess I was. But the memories are wonderful. All I remember is the show and the lights and the intensity of the crowd. Even when I try, I can't remember the pain.
That is why it is so important to keep experiencing the positive things in life no matter how much pain you are in. You can be in agony, and go to the beach, or you can be in agony and lie on your couch. The person who went to the beach in agony is going to remember the beach , long after the pain is forgotten. The person who lay on the couch in agony is going to remember the couch. Pain or no pain that memory is not the greatest.
I encourage everybody who is in pain to create some memorable experiences for themselves. Difficult but worth it.

[Faith]

That is why it is so important to keep experiencing the positive things in life no matter how much pain you are in. You can be in agony, and go to the beach, or you can be in agony and lie on your couch. The person who went to the beach in agony is going to remember the beach , long after the pain is forgotten. The person who lay on the couch in agony is going to remember the couch.

Well said, HM!

[pianogal]

HM, great point! There were days in extreme fatigue and pain I took my little baby to the beach and took photos, and now I don't feel or remember the pain, but I have beautiful photos to remember that day. I even flew to a special concert with my favorite musician, Sarah McLachlan, where I got to meet her personally. It was a huge ordeal getting there, but so worth it to finally fly for pleasure and not just for another doctor's visit.

[calluna]

This is a wonderful thread and I think everybody should read it.

Sunil when I read your one sentence from your very first paragraph - "We spend all day everyday in pain and anxiety as well as depression at times." I immediately thought - No! Because I spend a lot of effort not focussing on the pain, and deliberately taking my thoughts away from anxiety and depression. (CBT again!) It is easy to go that route, it is not so easy to deliberately move away from it.

And then you went on to give a truly wonderful account of 'living in the now'. I so agree with you! This is vital.

Every day I am glad to step outside and enjoy the fresh air, to look at the sky and the clouds and the light, and to see the seasons changing. These are good things. I try to fill my days with things that I love doing, I knit and enjoy the beautiful fabrics, textures and colours, I walk as much as I can. If I have to rest on the sofa, I make sure I have a good book, one that I will remember and enjoy remembering, and enjoy discussing with others.

Life is too short to waste a moment.

[helenlegs 11]

We either sink into the abyss, or use our inner strength and the outer beauty BEING. I have been guilty of sinking, especially of late. It's just a feeling 'sorry for myself' and if I look back on the last 3 years at the moment I will not have too many beach memories (there are some, just NOT enough)
BUT there is a level in my brain that has just clicked into open positivity because of this thread Sunil, thanks.
I read something recently that made me really angry 'pain is not a problem, it's just something that reminds us we are alive', Hey we are very alive people. Thanks for nudging me back to a better reality.
Thanks guys,
Helen

[HerMajesty]

So HM, what you are saying is that you are responsible for Pink Floyds breakup !!! So all these years I was wondering why they broke up and now I have my answer, I would never have thought that PN(E) would lead me to the answer !!! Pink Floyd I like listening to them, Dark Side of the Moon is my fav.
Sunil

Actually, the sad truth is I think they are still a band, or at least were for a long time after everybody stopped listening to them...the "breakup" was actually Roger Waters leaving the group. He kept them creative and they kept him from going way over the top. After he left, Pink Floyd became mediocre, and Roger Waters began turning out extremely bizarre solo albums.
Yes, I admit it was me, they looked down from the stage, saw how miserable I looked, and said, "we can't even keep the fans happy, something has got to change"