I was wondering how everyone copes with family and friends who don't understand chronic pain -- for example, if: (1) you have a "good" pain day, that means you're "healed," (2) if you move a box, that means you're "better," (3) if you say you're frustrated that there's not much that can be done medically because you've exhausted options, then you're "exaggerating and being negative."
I look "ok" since I can walk, make it through the work day (though I don't do much in the evenings), etc., but people can't see the pain down my legs or the sides of my hips, how hard it is to sit for long periods, how bending over is painful, how I grimace when going to the bathroom, or the constant stabbing/scratching pain in my back.
From the outside I might look like me, but I can't do what I used to do. It's not that I don't want to or that I won't "push" myself, but my spine has changed for the rest of my life.
I hate trying to pretend that I'm happy when I'm not.
I let it go. They don't can't and won't understand unless they go through it. Even then their opinion will be colored by their own experience. Just take it for what it is when someone says that they hope you feel better soon. They are probably sincere in that desire. You are the only one who can know what your pain feels like. Don't worry about what others might think. Love yourself just as you are. And if you are not happy, stop pretending. But, do things to get you in a better mood. Not because *they* want you to, but because it is good for you, and your health. Take care of you, extreme care, and the rest will either fall in line, or fall away. Now, I hope you feel better soon.
One Love,
Stephanie
"If we fall, we don't need self-recrimination or blame or anger - we need a reawakening of our intention and a willingness to recommit, to be whole-hearted once again."--Sharon Salzberg
29yo female, pain for the last 11 years, DDD, Stenosis, Discectomy Sx 2000, nerve block 2001, 2005, 2008. Discogram 10/9/08. Two level (L4-S1) TLIF (transforaminal lumbar interbody fusion) completed on 11/21/08.
Post surgery symptoms: burning and odd nerve sensations in right hip buttock and thigh.
That reply was wonderful. It doesn't fix anything unfortunately, but you put it into words in a way I wish I could. You are 100% on the mark telling dcguy to do things "not because they want you to, but because it's good for you". Sheer poetry.
Maybe one day I'll stop fighting who and what and how I am these days and just give in to the pain. My husband asked me for a Christmas list. I told him I wanted in this order: A new back; or at least one that would give me one day's peace (heck - I'd take a 1/2 day!)
; a cure for cancer 
; pain free days for my friends 
; peace on earth; shiny jewelry and/or a zero gravity chair. That night, when I came in from work, dinner had already been prepared, the kitchen was straight and he even offered a back rub (no strings attached this time 
) and said "Since I can't give you a new back...".
Awww. Wasn't that sweet? Yep this hubby is definitely better than my first!
Take care of yourselves my friends.
Jeaux
JEAUX - I am not a medical professional. BUT, I DID stay in a Holiday Inn last week...
Don't get your knickers in a knot; it solves nothing and makes you walk funny.
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I try not to think of myself as broken, but modified.
The thing is, I do not think that I am limited to my body internal or external. I am not limited to my flesh and bones. I am so much larger than this meat suit.
Your husband sounds wonderful. I too have found a gem the second go round.
That is the lovely thing about learning to listen to and follow that still small voice or intuition instead of what everyone else thinks I should do.
One Love,
Stephanie
"If we fall, we don't need self-recrimination or blame or anger - we need a reawakening of our intention and a willingness to recommit, to be whole-hearted once again."--Sharon Salzberg
29yo female, pain for the last 11 years, DDD, Stenosis, Discectomy Sx 2000, nerve block 2001, 2005, 2008. Discogram 10/9/08. Two level (L4-S1) TLIF (transforaminal lumbar interbody fusion) completed on 11/21/08.
Post surgery symptoms: burning and odd nerve sensations in right hip buttock and thigh.