I’ve had fibromyalgia for over 20 years. The pain began almost immediately after I received a series of Lupron injections for endometriosis. I was in my mid-30s when it started. It took two years of specialists, tests, poking, prodding, zapping, biopsies and participating in a study at Johns Hopkins to get my diagnosis.
My pain has progressively gotten worse. In my late thirties into my forties, I would experience plateaus, periods of time where I would have my “daily pain”, a constant but fairly manageable pain that involved severe but less frequent flare ups than I have today. There would be times back then when I could rest and get some relief but those days are now part of my past.
As I’m hitting middle age the manageable plateaus have become shorter in length and the flare-ups more intense and longer lasting. The pain is often relentless and I have more flare-ups and breakthrough pain than ever before.
This is nothing new. I’ve been down this road before. It’s the fork in the road between when things physically worsen permanently and when I finally accept it as my new reality. It’s what I think of as my in-between place, my internal battlefield where I go to war with my thoughts and feelings about what’s happening and how it’s going to affect my life.
I usually start out silently lamenting that things have indeed changed and are not going back to the way they were. I allow myself to mourn what these changes extract from my life but not without appreciating that I am still upright and capable of doing many things even while in pain.
I also go through a period of feeling worthless and unnecessary but thankfully there is a part of me that acts as a motivator reminding me I can’t let the pain take me down or I won’t get back up. I don’t know where this part of me comes from but she’s getting older and much more tired.
The internal struggle continues for a while, raging like wildfire in that in-between place, yelling, cursing, crying, bargaining and then, almost without notice, surrendering until finally, exhausted but better equipped to move on, I hit the acceptance stage.
The thing about chronic pain is it’s not just about pain. It has many offshoots – sadness, frustration, a pinch of self-pity, anger, worry, bad moods and feeling different in every aspect of life. But wait, there’s more! People who suffer chronic pain are also brave, resourceful, limit pushers and somewhat chameleon-like in that we learn to quickly change and adjust based on how much pain we are in at any given time.
At the end of the day we do what everyone else does, we keep going because we have to but sometimes it takes a dreaded trip to that in-between place before we can settle in to what we’ve finally accepted.
Surrender and acceptance doesn’t mean giving in, bowing down or giving up. It means doing the hard soul work, going inward and searching that in-between place and seeing what we are capable of even during our battles.
Illness does not define who we are. Our strength, stubbornness, courage and cranky warrior attitude does. Chronic pain may be our weakness but it is also the reason we become stronger. And with that we fight on.