There is always hope. New Daily Persistent Headache can be overcome. I am proof.
Last week, I attended a belly dance class. My body hurt through most of it, the residue of fighting Lyme and NDPH still sticking to me. At some point, in the midst of the loud music and scarves swirling, I felt something I have not felt in years.
I felt free.
I had a glimpse of a gift forgotten long ago. Wholeness. Do you remember feeling whole? I miss it. I didn’t think it was possible. I had stopped looking for it altogether.
NDPH is a Whole Life Crisis
The truth is (no matter how much I want to deny it), NDPH / Lyme broke me in multiple ways. It had an impact on every single part of my life over the past 8 years- my marriage, my kids, my relationships with friends, my work…you know what I mean. I bet it’s happened to you too. Friends slip away, connections weaken all around as we retreat into our own little world of suffering.
The disconnection adds to the pain. People don’t understand. They don’t even try to understand. More isolation for us. Depression. Anxiety. Anger follows.
Why? Why is this happening? Will it ever end? I just want to open my eyes in the morning and not feel pain.
I lost myself in the pain, anger and frustration of dealing with a disease that is relentless. I lost the person I was. Have you?
It turns out, she’s still in there, waiting for me to remember. Waiting for me to dig her out from under the landfill of garbage stuffed down on top of her over the past 8 years.
Wholeness is calling. And I may not have to be totally healed physically to find it.
My headache is mostly gone these days. I don’t know the specifics of how or why from a scientific point of view. I know that the treatment for Lyme (massive antibiotics) knocked it down and then down some more. I am not pain free, but I’m good-ish. Good enough.
It’s been an awful ride.
And I owe many of you an apology. If you emailed me in the past six months or so and didn’t receive a reply, I am so sorry. I have your story. I read your email. It means so much to me that you reached out. But sometimes, when I’m fighting pain on some level, I am unable to reply in a way that would be encouraging. So I don’t respond.
I don’t want to suggest we find a really high bridge and jump together. Yes, I have moments like that. So I hesitate to say anything at all.
Often, your words keep me going. Thank you.
I want to assure you that I am not abandoning you now that I am feeling good-ish. I think I finally have it in me to finish the book, redesign this site and (hopefully) add a support forum. I know that you need it.
If you would like to send me your story, the new deadline is July 31. I hope to get the book (in ebook format) up and ready by September 15. I will also be taking stories from here on the site and trying to organize the information provided here.
My final thought is the same as my first. There is always hope. When my headache began, I had a 6 year-old and 16 month-old to care for daily. I had to go on. I had to get out of bed every morning and give them my best. My best often sucked. But I tried. It’s what kept me going. Now, I have a teen, a 9 year-old and a 6 year-old. I have failed them often, retreating into my pain, struggling to simply survive the days, but I went on because I had no choice.
I gave up all the things that I loved and believed in – the things that made me who I am – or who I was. I left my work as a massage therapist. I specialized in chronic pain management and migraine treatment. Ironic? It couldn’t help me. And if I couldn’t find healing, how could I possibly help others? I eventually stopped riding horses, my favorite hobby. The pain was too much. I stopped dancing around the kitchen, finding joy in the movement, in the moment.
I stopped living and settled for surviving.
If you don’t have a reason to push through the pain, find one. It doesn’t have to be big. Maybe your goal for the day can be to find one thing that will bring you happiness. Maybe there is something you love to do that you left behind. Go do it. Just try. You may not do it well and that’s okay. The point is to keep trying.
Act on your hope.
Wishing you a good-ish day.