Coping & Hoping...hmm.. that's where we are at today.
I feel like I'm in mourning, kind of like the way I felt when I lost my Gramp so many years ago. So I look at The Five Stages of Grief. Denial, Anger, Bargaining, Depression and Acceptance.
As my Therapist told me, I was mourning my former life, the loss of my normalcy, the loss of my job, the loss of being in control. I know she's right, I know this what I feel, the loss of being able to move. It's as simple as that. The freedom to move my body and not have pain. I can not walk heel to toe on my left foot, I have extreme sharp and stabbing pain every time I move. When I'm sitting I have an achy pain that goes from my hip to my toes. The burning pain like having your foot too close to the fire or even on fire that licks up my foot into my shin and calf slowly up to my knee.
The McGill Pain Scale goes from 1-50, RSD sits at about 42, amputation of a digit is 40, child birth is a 32. There are some days when I feel like I can manage the pain, those are the days I tell everyone I'm doing okay, and I hear things like “You look good” or “Glad to see your better”, but that's when I start to get depressed, because I know I'm not going to “get better” there is no cure, I'm going to get where I can manage this monster, where I can figure out what works for me, and only me, because that's how this disease works.
Coping also includes how the bills get paid, and this causes the stress level to go up add that to the burning stabbing pain I'm feeling and there are days I don't want to crawl out of bed, everyday I do though, even if it's just to move to the couch where I sit most of the day and feel pain.
Feeling useless, broken and hurting. I don't know if that makes sense, but that's how the days are.
I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times.
Now all I have is hope, hoping that I can manage this pain, this monster of a disease...Hoping & Coping makes up my day.
Me, again!
ReplyDeleteYou're so right about those stages... and that you don't just move through them in a linear fashion; you might be in one stage and then suddenly find yourself chin-deep in one you thought you'd moved on from. This is normal!
Yes, it's a difficult journey learning how to cope and I hope you will ALWAYS hang on dearly to your HOPE.
"I didn't go through denial, I was glad to know that what I had, what I was feeling had a name. I am angry, I don't bargain, but I feel some serious depression, and I waffle into acceptance at times."
That is so much like how I felt/feel. FYI, I was diagnosed February 2008, but was injured March 2006!!! Over a year post-diagnosis, even with counselling and now in an intense rehab program, complete with psych education/pain mgmt. classes... gosh, it can still be such a struggle.
AND the more I've let go of the feelings of struggle, the better I tend to feel (stupid stress making things worse, as you know!).
But acceptance is a funny beast, no? Just when you think you may have achieved it... blam! "NOOO!" says the mind!
You CAN manage this; I hope you have a good doctor or 3 who are willing and able to take you through trials of medications which can make SUCH a difference (for me, I had SUCH severe stabbing pains, as if someone was attacking me with a knife or a giant spike! GAH!).
It wasn't one med or even two which helped control things for me; it's a combo which seems to be helping best... and that can change over time, too. (I'm happy to talk which meds, if it's of interest to you - I know I've asked others to compare!).
But just as important as the meds can be is learning how to relax and not feel scared/angry/freaked right out when the pains worsen... 'cause as you know, that just makes the cycle worse.
Learning what I had really helped me because then I began to tell myself when it hurt that "IT'S OK; it hurts, but it't not a danger to your body. You're ok. Try to relax."
Might sound silly, but it's really important to stop the sympathetic nervous system's cycle (fight or flight response=adrenaline rush=danger! run!). It's something I'm still working on and I've had progress - it DOES work, believe me!
AND there is still pain, I'm sorry to say. But my tools for handling it are SO improved. AND I'm still on the journey... happy to hold out a hand to someone else doing the same.
Wishing you less pain always,
Lisa