to what other sites are you referring to where they "wallow" ? I try to keep a more open mind and can understand that sometimes on these sites ,including Mayo sites, people need to discuss the realistic limitations of their disease. This is not to say we don't need to push ourselves to perform to the max but it can get even more depressing if all you hear is "be more positive" sorry I am terminal, or "exercise makes you happier" many days this works BUT reading ONLY THIS on a HIGH PAIN DAY... INSTEAD OF OTHER COPING MECHANISIMS...just adds to depression.
Sometimes ,as virtuous, said we just need to vent. To have a shoulder to cry on and not get preached to about "being positive". There is a time and place for everything. I am 100% positive most of the time BUT I occasionally need someone to just hold me ( or equivelant on computer) and throw me a pity party. If you consider this wallowing then please respect me and my suffering and one or two days a year... let me wallow...without being judged.

background degenerative joint disease, fibro, carpal tunnel, planters factious( know spelled wrong) 3 surgeries on knees, 3 on 1 and 1 on the other...SHOULDERS, knees...2 on each, misc. surgeries on thumb, index finger and elbow. Most of pain now is back (several bulging discs and granulomas? on spine) and CANCER PAIN why is it most research points to the existence of cancer pain and yet most Dr.s' say it doesn't exist. I have Thymoma/Thymic cancer had my chest cracked went thru radiation and chemo , having my second recurrence.
I also know a little bit about pain but am sure many people suffer more than I
BUT PLEASE don't say I wallow

Welcome to the Chronic Pain group, @allisonsnow. I'm glad that you've joined us here as well as in the Cancer and PICs groups.
I see that the choice of the word "wallow" has struck a chord for you. If you re-read Jen's message, you'll see that she agrees with you saying, "It's okay to be frustrated and vent." Venting definitely has its place here and it is accepted without judgement. Jen goes on to say that she has observed other community sites where people only talk about what they can't do, and that she appreciates that members of the Connect community allow for that too, but also offer kindness, and helpful and supportive information.

Allison, You have quite a combination of pain conditions. It is hard to imagine, but your strength and participation is inspiring for other members. Who is helping you with pain management? Your oncology team? Palliative care team?

I get it totally. It is so hard to know sometimes what to say to folks that have your best interest at heart and want you to be better, but that is not what is happening. So pretend? My circle has gotten pretty small as my Complex Regional Pain Syndrome has worsened. It is O.K. to recognize that it sucks, but just not to stay in that space.

I agree @janetdh you can't stay focused on the pain. Finding how to live with the new life pain has carved out for us can be a long road.
I went to the chronic pain clinic at Mayo several years ago (don't know if they even still have it) , it did help me adjust and gave practical advice. When we were in group discussing pain and the sadness we were feeling and how to express that to other people (or not) I drew the comparison to grief, I was grieving the loss of who I had been before PAIN without having any idea who I was now or who I could be.
I was no longer the "fun gramma" going hiking and on adventures in the woods. I did eventually learn new ways to be the "fun gramma" but I often reflect on what a different person I was before. some of the changes have been for the good, even after getting cancer, I am calmer and more accepting. I am more proactive in all areas of my life especially my health. I consciously work at building memories with my son and 5 grandsons (two of which I wasn't supposed to live to see) The less positive changes is that I do pretend a lot ! My husband just feels sad and helpless when we talk about it or he sees me suffering so we don't talk about it and I act like I am fine. One of my closest friends I fear I have lost because she just can't deal with the cancer diagnosis and the knowledge there is no cure. Since she struggles with her own feelings she has chosen to stay away and not face it.
I have tried to make clear to all my friends and family that I AM NOT CANCER I am still me !!! There are a lot of things we can do and talk about without ever discussing IT. Hard to ignore it totally as I am on oxygen 24/7.
It doesn't seem fair we have to lose friends on top of everything else. I get angry and ask myself if I can deal with it why can't they? But then I remember how hard it is and that I love them and the anger fades.
You sound very grounded I am sorry you have to deal with so much pain, try to stay connected to the people you love.

I really like how you talked about grieving the person you had been before pain and the journey of finding who one is now and who one could be. I found that I have stayed away from my professional relationships--so many emotions involved there. And have a friend that just couldn't understand that my "recovery" wasn't "normal." It hurt. Think I may still be grieving that person that was and am beginning to explore who I can be. My son and our four-legged family member have been my biggest blessings--unconditional love.

Thanks Janetdh, it was a long time before I came to terms with that and I still have my sad times. I was put on oxygen and then taken off AND then put back on for what I knew would be for good and I can still remember how after the techs left I collapsed next to the concentrator and cried like a baby. I would be tied to this cord or a tank forever but eventually I adjusted and occasionally I forget about it (until I look in the mirror). I have even plugged it in out in the garage so I could still garden. I can hear what you are saying about work (I think) I really miss working and the people there. You will find the new you just be open to all new possibilities.

HI janedth,
Talk about how a person never knows what they say can mean to someone else they don't even know. Well, I am that person. Your sharing about grieving about who you once were and staying away from co-workers and friends, is something I have struggled with and didn't really understand why, and your comment hit home for me. Thank you! Now I can process this and do something about it. I grieve that I cannot travel, or play with my grandchildren, and visit my children because of inability to ride very far or drive. Anxiety overcomes me sometimes, i had meds for that...thank God! but I still yearn for days that I was active, I was very athletic and could do justa bout anything I wanted to, and excelled in a lot. So now I try and mostly succeed to be glad that I am and I figure out how to do things a different way. Finding who you are??? Do we ever really know for sure?? I know that I have found peace and I hope that for you.!
PEACE & LOVE ...JJ