Sometimes when I give talks about my story, people in the audience start crying. They laugh too, but that's sort of part of the deal, I use a lot of humor when talking about health and healing. But why do people cry when they hear about other people's pain? Is it just empathy, or does it awaken their own grief, something they don't often look at but maybe need to deal with? Sometimes it feels like by being a professional patient who has learned to live with her handicaps I am also being some kind of ambassador, reminding others that quality of life is not simply about "fitness of body".
While preparing for this conference I spent time working on my presentation, and realized that the posture thing was very very relevant. Body language and all that... But keeping a good posture when standing up and concentrating on it wasn't all that hard - and it definitely feels like it can make a BIG difference on my overall muscle pain.
While working on my posture this week I have just kept bringing my attention to it, checking and correcting as needed, maybe once or twice an hour, sometimes more often. For correcting my posture I have used this old technique I learned sometime in drama class, visualizing that there is a silk thread attached to the crown of my head, gently pulling me up and straightening my whole neck, spine and body.
It works really well when I sit too, and this week it's been really obvious that my neck pain (and in extension migraines) are very directly affected by my seated posture. Especially when I'm in front of my computer I have a tendency to slump and let my head fall forward, which I notice strains my neck muscles in a way that seems to provoke the whiplash pain with a delay of a few hours.
Ok. So first week of implementing gradual change feels very meaningful!!! I have learned important things about how HOW I use my body directly affects my physical pain.
Hmmmm... now what would be a natural next step? Will ponder this until tomorrow... :)
Great post (as are all your posts are actually)! I also find that my seated posture affects my pain in my mid- to upper back and neck. It also affects my breathing. If I´m not upright, I don´t breathe very well. That in turn affects how tense my muscles get. I guess that´s partly why I´m always exhausted after a day at the office.
ReplyDeleteI must admit I almost cried when you talked at the conference, when you got to the part about fearing the pain. That part also made me cry when I read your book. It´s definitely (for me anyways) both empathy and my own grief. I´m so sorry you´ve had to go through all that you have. At the same time there´s probably a whole range of feelings attached to my pain and my history that I tuck away under the carpet. It´s easier for me to grief your pain than my own, and that way your story is some kind of relief for whatever I don´t want to look at in own life.
Oh Kaffedamen!! I'm so glad you were there at the conference, and so grateful that you share your thoughts about my book. Thank you, thank you, thank you... It really makes it worthwhile when I hear that my writing and speaking about living with chronic pain can help others.
ReplyDeleteBeing honest and open about my process isn't always easy, some people interpret it in really strange ways (maybe especially doctors - who could possibly feel threatened by my opinions?)
Anyways... I've found that fear is a central part of the pain experience, and that's natural!! Because acute pain signals are meant to function as warnings to the brain, they are _supposed_ to trigger fear. But when the pain is chronic the fear becomes part of the problem, triggering stress, intensifying the pain experience and preventing relaxation and pain relief. My "guesstimate" is that we as chronic pain sufferers can alleviate our own pain by 50-60% just by learning how to overcome the fear and stress response.
And I think it was the turning point in my healing journey when I allowed myself to really grieve. Grieve the pain, grieve the loss of life quality, grieve for the years I had lost to sickness, grieve the loss of my healthy identity... And the strange thing was, letting the grief surface wasn't nearly as frightening as I thought it would be... Actually fighting to repress the grief took more energy than letting it out. But it's a gradual process, and I still have grieving to do. Sometimes it feels like there are pockets of old pain trapped in my body tissue, hammering on my nerves. I need to cry to let it out, and then fill my days with beauty, love, laughter and joy in order to rebuild the life that the pain has taken away.
It´s really strange how some people interpret things. Sometimes to make it fit their agenda. If I were a doctor of any kind, I would (hopefully) try to be open and listen to the patients experiences, and use that in my work to help them and others.
ReplyDeleteAfter I read your book, especially the fear part, I´ve become a lot more conscious of when my pain is really fear, and why the fear kicks in. It´s not always the fear of pain, but quite often the fear of the consequenses of the pain. "Maybe I shouldn´t go to this conference, I might get a lot of pain, and thereby exhausted, from sitting all day" for example. Now that I´m more conscious it´s easier to discard that thought and be more active. So thank you, thank you, thank you for bringing the fear of pain to my attention!
I know I should grieve. I´ve cried over all the things you mention maybe 2 or 3 times since I got diagnosed in 2007. I think I´m afraid to really grieve, because that would require that I accept (really, really accept) the fact that I´m ill. I´m not there yet. And this is where I think having a therapist of some kind on the team would have done me a lot of good from the start. That was never mentioned though. No one has ever asked how I cope with the pain and all the things that go with it. My doctor knows I suffer from anxiety, but she has never mentioned the obvious link between chronic pain and fear.
Oh well, I get upset thinking about it. I´m used to having to fix everything on my own. I just wish, at some point, someone like my doctor would at least share some of the responsibility with me, and provide me with answers, comfort and useful tools or treatments without me having to figure it out for her.
I could go on, but I have to go to work. ;) As you probably know, I don´t tend to hang on to the negatives, but it´s both necessary and useful for me (and anyone, I guess) to acknowledge the disappointment in the health care system. Hopefully, someone in that system listens. :)