Why “Give Up” Has Been The Best Advice Any Doctor Gave Me

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

Advertisements

Posted by

Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

11 thoughts on “Why “Give Up” Has Been The Best Advice Any Doctor Gave Me

  1. Yes! You have to let go. You can own this disease by accepting it. I went through so many doctors and treatments just like you. (I was in a car accident in 1998 and received my fibro diagnosis in 2001.) I so wanted to find that ‘cure.’ I was moved by what you shared! This disease is not for wimps! ~Kim

    Like

  2. Totally agree with your article. I have Fibromyalgia. One doctor put me on Fentanyl pact and just kept increasing it for the pain. I also have viral cardio myopathy, intercostal myopathy, RLS, migraines, etc. I had a very bad viral infection about 5 years ago and that’s when everything started with me. I lived in NJ and the winters were killing me. I did go on medical marijuana and moved to Florida and I must admit I feel better. No more weeks in bed, maybe a day or two here and there. When I feel good I tend to over do and suffer for a couple days after. So I, as you, am learning the disease and making adjustments ever day as to how I can get the most out of my life. God bless you and all our fellow fibro sufferers.

    Like

    1. Wow Kathie. Incredible. Fentanyl??? You are *clearly* a warrior. I’m so sorry it got to that point. I think that’s a point we all live in fear of reaching, because once we do, then what?? I am so happy for you that you’re feeling better. YAY!! I have heard that moving to a warmer climate can help. Even more astonishing is that somehow, living near the water helps even more. I would love to understand that phenomenon. Are you near the water too? I’m thrilled you’re living more. Good to know there is still life, even after you hit the level of pain that you did. Thank you SO much for reading and commenting, I greatly appreciate it!!! ~Stacey

      Like

  3. Yet another great article…looking forward to the next…good for you that you figured out by yourself the best way to deal with this disorder and carry on the best you can…in the end I think we are more informed than the doctors we see

    Like

    1. I agree, Kim. It just depends on whether we are able to find the right Doctor who also agrees!! The way I always see it is this: you can have the best, most contientious, well meaning Doctor in the world, who is super knowledgeable. But they typically schedule appointments once every ten minutes. So the key is this: who knows more about you and all of your issues? You or a Doctor who sees you every so often for ten minutes??? No matter how much they want to help, they aren’t you. They have other patients to worry about. You only have you. We have to advocate for ourselves, strongly. It can be a huge challenge, but it always proves worthwhile. Either you know you have a great Doctor who will work with you and help or you know you need to find a new one. Great comment Kim!! Thanks so much!!!

      Like

  4. One of the best articles I’ve read yet, on fibromyalgia. So many of them I find depressing ; and yet you wrote with honesty and were uplifting ♥️ I have it as well and have always been a fighter. Fight thro the pain and do it, find a way of nutrition that helps, try antidepressants if it will alter my brains signals going off so soon… etc etc etc. Have you found any one pain med helped best?

    Like

    1. Thank you so much, Twila. I know, I often liken this life to living in a bubble. Everything has to be “just right”…..right meds, right diet, right exercise (when /if possible), no stress and sometimes all of that still fails. But at least we’re fighting back!! You actually gave me a great idea to write about my meds that have been successful-so thanks so much. If I had to pick my top, can’t live without med, it would be Tramadol for the pain and RLS. I have tons of trouble with medication sensitivities (or ineffectiveness). For me, Tramadol works and does not have all of the other side effects that a lot of the others do. It effectively manages the pain enough so I can have some semblance of a life. YAY.

      Like

  5. Hi Stacy,

    Wow! Just , wow!
    If only I had the words or wisdom to give you some comfort.

    This was an inspirational read, but for the record, I still believe in miracles and will be praying for one for you. In the mean time, your approach and mindset are an amazing mindset and perspective.

    I think you’ve got this and will prove to an inspiration to many. I saw this happen in the early 1960s when my mom had a bad case of breast cancer and underwent a radical mastectomy. She survived a brutal surgery, chemo and radiation and lived about 40 years more, long enough to raise my sisters and me. She also became something of a coach for other women in the same situation and that was her way of fighting back once she was fairly safe.

    I sense some of her fire in you.
    Applause.

    Like

    1. Wow, thanks for that incredible compliment, Gary. Sounds like your Mom was really incredible and turned her tragedy into something that was positive-that’s truly inspiring. I think that’s the intention behind alot of people who choose to write. I know it’s why I decided to. I got really tired of drinking all that lemonade from my life’s lemons. It was time to start planting them!!
      I agree 100%. I believe in miracles too. Thank you for praying for me. We continue to pray for the same.
      Thanks for reading and commenting!!
      ~Stacey

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s