I’m a fighter by nature. The fight to get answers and ‘get better’ has been no different. If anything, it’s the most (tenacious) fight of my life. In the beginning, I was determined to find that one Doctor or one medicine that would “make me better”. Instead, it was actually the exact opposite thing that finally brought me peace and acceptance; giving up.
As a former Healthcare Consultant and Medical Advocate for many, I have seen and know the possibilities that modern medicine gives us. I have worked with countless Providers and know they’re akin to miracle workers. I live in Massachusetts, where some of the best hospitals in the world reside and yet, none of it mattered. I just kept getting sicker and sicker and more and more debilitated. My Husband and I were convinced that someone, somewhere, had the key to my getting better. We just hadn’t found them yet.
I often liken getting Fibro to having your house hit by lightning: it fries everything, some things even explode and it’s impossible to know the true extent of the damage. Seemingly overnight, I went from an active Yogi, working, Consulting, going to school and raising three kids, to a stranger who relied on her Husband to carry her up the stairs and helped her shower. One diagnosis multiplied to many and I found myself slipping down the rabbit hole to Hell, instead of the one that leads Alice and White Rabbit to Wonderland. There were times that the pain was so profound and unending, even with pain meds, that I screamed for hours, with my Husband pleading for me to stop.
My Husband and I traveled from Doctor to Doctor and facility to facility looking for answers. Sometimes we got them and seemingly always, the new diagnoses had no cure and few helpful remedies. I spent weeks in bed at a time. Alternating between the symptoms of ailments I had. I was plagued by migraines, pain and weakness. As soon as one set of symptoms would quiet down, something else equally unbearable would take it’s place. At one time, I could no longer walk unassisted.
Eager for anything to work, we were willing to try everything and anything. We tried anti-malarials, anti-depressants, antiemetics, antihistamines, anti-seizures, chemotherapy, calcium channel blockers and opiods. We were desperate for relief, for a cure and for a return to what my life had been.
We were still deciding between The Mayo Clinic and John’s Hopkins, when my Fibro clumsiness caused a horrific fall. My Husband described it as something you would see in a cartoon: I fell so hard that I bounced and actually hit the floor twice. Initial testing suggested a spinal fracture. After numerous appointments and diagnoses, we finally wound up in Physical Therapy, again. That fateful fall and the resulted disabling pain proved to be exactly what we were looking for, unbeknownst at the time.
Finally properly diagnosed, the Physical Therapist said that while she would try to help, my body was in too bad of shape for her to do much, but that she would try to lessen the pain. Weeks in, there was little improvement and barely any relief, when she told me there was nothing more she could do. She did, however, have one last idea: she told me her Physical Therapy Professor may have some ideas and that she would reach out to her, asking for a favor. The Professor agreed to see me and we had a six week wait to see her.
Seeing this second Physical Therapist was monumentally life-changing. She examined me in a way that no one else had. She explained to us how pain had fundamentally changed the very structure of my body, pointing to excessively protruding ribs that were the result of taking constant short, shallow breaths to get through the pain. After reviewing my medication list, she told me how horrendously I was damaging my liver and the additional dangers I was introducing with taking SO many drugs for an indeterminable amount of time (we sort of already knew that one). She took an approach that no one else had: to view the effects the diseases were having on my entire body, mind and life.
Once through with her exam, she mentioned a few tips, gave me a few very simple exercises to try and told us she would work with my previous Physical Therapist to determine a few things that she could try. But she concurred that there was little to be done, given the painful condition that my entire body was in. Then, she gave us her overall best advice. The miraculous advice we had been waiting six weeks to hear: she said to give up.
She went on to explain that there was nothing that she could do. But it wasn’t only her that could do nothing: no one could help. She explained that there was nothing anyone could do. That with each illness I have, they’re chronic and incurable. Traveling from Doctor to Doctor and facility to facility would do nothing to change that. Then, we were presented with a choice: continue to try finding a non-existent cure or provider that could help; endlessly stuck in a cycle of waiting and disappointment. Or to accept what was in front of me: there was nothing that she or anyone else could do to give me back my old life. There is no fix, no cure and little relief. BUT…..I could give up. I could finally accept that there is no help and to stop looking. That instead, I should try to see a Psychologist who could help me accept my circumstances and learn to live within the confines of my diseases.
Her advice broke my Husband. Once again we had waited forever, only to see another Provider with no answers and nothing that was cut and dry that could be done. But for me, it was the advice that changed my life, because she was exactly right. I was no longer living. My entire existence revolved around finding the right person, right advice, right facility or right drug. I was endlessly searching for the return to who and what I was and the life that I had always had. None of this was life. It was endlessly living in limbo for an answer that would never come. The life I had was gone and it was never coming back.
I took that advice and it has been life changing.
My brilliant new Therapist had no miraculous answers, either (tons of help-no miracles). But it was a new approach and it was about finally letting go of a life that is no longer mine. Working with my Therapist helped me to (somewhat) embrace the life that is now mine. No matter how ugly it may be. Because I still get to live. I’m still here. I have love and life and an opportunity to live that life in whatever construct it is that I create.
I still have to lie on the couch, sometimes for days at a time (although it certainly beats weeks, recently). I just spent 9 months unable to drive or leave the house without “supervision”. There are nights that I’m not sure I can handle living this way anymore, nevermind living an entire lifetime this way. And sometimes, the pain is so bad, I pray for Jesus to help me or kill me; whichever one is quicker. But these days, I no longer solely look to Doctors, award winning facilities or the newest latest and greatest diet, fad, regime or fix. These days, I hunker down and find my inner resolve; no matter how broken or buried it is. Because that is the only thing that can help me. It is knowing that I am (sort of) in charge of living this new life. I get to be and do what I choose, limitations or not. I can still strive towards accomplishment and improving myself, no matter how small. I get to be in charge of my life. *I* make that decision. Every time I fight another day, muster the strength again or finally stop crying is another defeat over living with Chronic Illness. And I did that.
ps I still take pain meds