LIVING WITH CHRONIC PAIN . PART I
- Janet Bauer
- Jan 14
- 3 min read
What?
Wait!
How Did I Get Here?
“I’m lost somewhere between
where I belong and
where I can
no longer be.”
Never in a million years did I ever think I’d be where I am today.
I was a happy, healthy, active, lively being.
Doing a job I loved, trained in a field I loved, volunteering and helping others - which I loved, living a life I loved.
And now, here I sit, living a life I never thought I’d have to live, mourning the loss of the life I once had . . . trying to stay connected to the outside world despite the debilitating pain, exhaustion, sadness and grief that overpower me, gripping so tight I feel I can’t breathe another breath, move another inch or think another thought.
But I do. I summon up whatever strength is inside me to get up each day and face it in the best way I can.
Looking back now, my journey to this point was filled with ‘warning’ signs.
As a child I had severe and chronic nose bleeds—day and night. Around five, I broke my arm. As a young teen, I had ‘growing pains’ in my knees—so severe, they prevented me from sleeping and eventually running (which I loved).
Before 20 the locking up and screaming pain in my knees was diagnosed as patellofemoral pain syndrome or ‘runners’ knee’. Surgery to remove the loose cartilage was not an option and neither was continuing to run. At 22, despite doing it 'correctly', I injured my lower back lifting a 50lb. box.
In my early 30’s vertigo and tinnitus showed up. At around 35 I developed severe tendonitis in my wrists. By 40 tennis elbow had set into both arms. By 45 the pain that had developed in my neck was excruciatingly unbearable. Daily headaches and migraines were added to the mix. My shoulders followed suit – to the point that I was unable to raise one arm up at all.
A myriad of therapy, medications, treatments, exercise and all that went along with managing these illnesses was all I could do to get through the days, weeks, months and years of increasing pain and decreasing ability to manage as I had once been able to do. I did, as they say 'learn how to live with it’.
I had to accept that this was the way my health and my body were.
So I did. I got up every day, did my best to ‘put on a happy face’ (aka mask) and 'face it’ (aka fake it).
If you saw me, you wouldn`t know anything was wrong. I was a ‘picture of health’ living inside a frame of invisible illnesses.
At 46 the picture finally fell from the wall I’d created.
My frame couldn’t hold the fragile cover that protected it in place any longer. I had to let it go. It fell – shattered - and the shards of my illness stopped me dead in my tracks. By this time the pain in my body was wide spread, unstoppable and excruciating. My hours of sleep had been reduced to virtually zero. My ability to function cognitively and effectively had diminished to almost nothing. My body said, “no more!”
And then…the ‘F’ word became a part of my life.
Not the one you’re probably thinking—even though I’ve used that one more times than not. It was Fibromyalgia; a condition I’d heard of but knew very little about. I had to start to pick up some pieces and try to put this puzzle that was my ‘new’ life together.
I’ll continue this series and write about the chronic pain and illnesses I live with.
‘The ‘F’ Word’ –Fibromyalgia. I’ll talk about my diagnosis, what fibromyalgia is and how it affects those who live with it.
What I Do
My full time job is managing my chronic pain and illnesses. In this piece, I’ll tell you how I do that and will share some of the many resources I’ve discovered along the way.
What You Can Do
One of the hardest things about living with chronic illnesses is living in a world filled with people who ‘don’t get it’. This isn’t always the case. But, sadly, it happens more often than we’d like.
I’ll talk about some of the things you can (and some we’d rather you not) do to support us in our journey to live the best life we can.
By Janet Bauer . First Published in Island Gals Magazine . 2011 . Volume 3 . Issue 1
