How do you deal? a bit of a long post. Feedback wlcm.

[steve396]

THE PROBLEM
We all know that being in abject pain can have a profound affect on the way we live our lives; emotionally, physically,
professionally, etc.

I try not to tell people about my pain, since they are powerless over it. They kinda wince half knowingly and say I'm so sorry. I do however, explain the syndrome to the people closest to me. I say imagine for a moment that your in pain. Imagine your facial expression and how you eyes close a bit, you begin to lose your peripheral vision. When one is in pain, you lose your peripheral vision both literally and figuratively. We become myopic. Things around us either disappear or go out of focus; including but not limited to loved ones, hobbies, current events and the like. When it is at its worst. it can be like seeing life through a tunnel.

SOME HOPE
I recently searched "pain advocates" on Google and found myself on the phone with a very nice lady from one of the many non-profits PM help groups out there (a very good resource for pain sufferers that are having problems with dr.s or need help with coping skills.) She told me that I needed to embrace yoga, stretching and other things that I just couldn't wrap my head around. Never the less, it stayed in my head. How could I improve my position? How do I rewrite my future? After wracking my brain for a while, I decided to accept the fact that my pain wasn't going to get much better than it currently is, although, of course, I still search for a cure and better therapies for my SCI (T-11-T-12). Being "Sick and tired of being sick and tired," I'm not satisfied with being medicated into last Tuesday. I've just learned to be happy with the level of comfort that my current meds afford me (current meds not currently being afforded by current ins. co., working on that though). If we let pain define us, it becomes our identity.

THE QUESTION
We must become bigger than our pain, but how? I'm not sure how, although, I live with the challenge to find out daily, except of course, when the pain is so strong that I can't think of anything else?  So how can we be bigger than pain? That is the $64,000 question. Who knows, but  I'll take a bunch of $6,400 answers.  I owe it to myself, my loved ones and my future to find as many as possible

THE ANSWER?
One $6,400 answer for me is maximizing the good days. I make a list and get only I know when it is right to finish it. Having grown up with a very strong work ethic, it took a long time for me to distinguish between being lazy and needing to take a time out, or day out for that matter; an option that sadly all of us can't do, either because of work, children and the like.

[deadgamegrrl]

I have only had fibro since late spring this year, so I am a novice at this.  I find if I start thinking about the next year or 30 I start to lose my mind.  I have to focus on the current moment of the day, sometimes minute by minute if the pain is really bad.
I have really embraced mindfulness meditation as a way to both control pain and to keep my sanity.  I do sitting meditation, body scan meditation & yoga as well as incorporating the mindfulness mentality into daily tasks and work.  On a good day, it works a lot like when you are getting a tattoo and just kind of zen out into the pain lol!

When I do start crashing mentally, I try to focus on the fact that at the current moment I am in fact 'making it thru', and also 'there is more right with me than wrong, and my pain is not me' (line from meditation).

Also, I have a history of severe depression cycles since I was a teen.  Fortunately the celexa I'm on is controlling my depression now.  But I remember the times I was in psychic hell at the bottom of 'the black hole of death' as I called it, and I'll take physical pain over that any time.

Finally, my mom passed away in 2004 after having ALS for over 6 years.  She exhibited an unimaginable strength and dignity throughout her illness, even to the end when all she could do was blink her eyes.  I have worn her wedding ring since the day she passed, and when I start losing it, I spin it and think of her.

I feel for everyone else on here, many who have much more going on than I do!

-- dgg

[flower12345]

It's hard to live this way. Having constant pain is really difficult. I really depend on God (I am a Christian) to get me through. Without Him, I would be lost. Also, I have a lot of support from my family. That helps. But, I still have a hard time. I do still have hope though that in my lifetime the doctors will find a better treatment for pain.

[peekawho]

It's a wonderful topic.

I'm trying to wrap my head around dealing with the rest of my life right now.  Some days I feel that I deal well with it.  And then another day comes ( today, for example)...and I'm at the bottom of a pit.

I cannot live for 30 more years like this.  While I am not suicidal, I do sometimes find myself wishing that something would happen..the cancer will return, getting in a car accident..and I would die sooner.

I'm not suicidal, but I wish I would die.  Does that make sense at all?   It's not a good morning for me.

[horselip]

Great thread! One answer for me has been to help others who have my condition. I have a rather complex medical situation. Sadly others in the process of being diagnosed and just beginning their own journeys.

When I feel good enough...but not "great"  I answer a few questions on MedHelp. I find it rewarding.

I also have a few folks that I mentor (for lack of a better word). People who have my own medical condition that I help in a more in-depth way.