NDPH is a Whole-Life Crisis

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.

Dancing with scarves at Sound Wellness, Newtown, Connecticut

Dancing with scarves at Sound Wellness, Newtown, Connecticut

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.

Amy

 


Comments

NDPH is a Whole-Life Crisis — 11 Comments

    • Thank you! I’m hoping it “holds” if you know what I mean! Every time I declare even the smallest victory, I feel like the pain comes right back. But being pain free for even just a little while is a big deal.

  1. Wish to share my story. Was 24 years old, developed neck pain, sometimes excruciating, occasionally vomited, sometimes became bedridden with pain before storms, vomiting and pain became so bad I would go to ER. Was always asked if had headache or sleeplessness, but neck pain so overwhelming it was all I could feel and I slept a lot, so tired. Then dizziness started, sometimes couldn’t get up off the floor for 4 days. Tried every doctor, multiple surgeries, etc. some said untreatable and it would keep on getting worse and claim my life! Finally a rheumatologist tested me for Lyme, said positive, put me on doxy, and then multiple antibiotics and much more, 60 pills per day and other things. Realized my head was killing me, too. Every single day. After 25 years of pain, one day it was over! Missed so much living, but with husband,s help found cure and raised family. Which medication did the trick? I don’t know, but I was on antibiotics for 9 years before I got pain relief. When a doctor says “must learn to live with your pain, no cure, get on with your life” I say No!! There is a reason for pain, you just don’t know what it is! Hope is what helped me all those decades that doctors didn’t. I wish all of you hope while you seek your relief, may you soon find your way back from the pain. Best, sue

    • Thank you for sharing your story. I’m sorry to hear that you suffered for so long, but it is wonderful to know that you are now out of pain. Hopefully, your story can help others get there faster! I know for myself (2+years on antibiotics) was the only thing that touched the pain. Its a controversial treatment and I think that is hard for some people to get past…but it has seemed to work for many people with NDPH.

  2. my son has NDPH; other than assuring him that i love him and that will never stop, i do not know what to do for him; he lost his job and even the fun things he enjoyed doing, the pain is excruciating; i pray that it eventually goes away and he can enjoy life and his family;

  3. You have said everything I have ever thought. I have had my constant headache pain for 14 years would love for everyone I know to read this post just so I can feel better understood. I feel “okay-ish” and sometimes “good-ish” and it’s only then that I can ever do the little bit extra, so I completely understand. I am also a mother of three and like you even had a third child after the pain had started. Everything I had to give pretty much was given to them. Two years ago we got a dog…what a victory to feel well enough to add a dog to our family. I felt so normal! I’d love to contribute to your book!

  4. An additional comment to my post is about your being a massage therapist specializing in chronic pain yet you couldn’t help yourself. After my pain began I became a life coach and have struggled to keep doing that work because I believed I should have been able to “coach” myself to wellness, overcome the emotional and energetic blockages that I believed led to my pain and yet I couldn’t get better. Who was I to coach anyone? I’m on the brink of quitting coaching all together and finding work in the communications field (writing/PR/adverting etc.)where I won’t feel like a “fraud” because I couldn’t “write” my way to wellness. Thanks for listening…

  5. So glad you are mostly pain free a lot of the time now, and I hope you are able to finish the book. I am still on my quest to find something, anything that will help so far I’ve had no luck. Currently just over 3 and a half years of NDPH,I feel that it has taken so much away from me. Am glad you have been able to find most of your old self again!

  6. I’ve been living with NDPH for almost a year. I am 14 years old. I’ve tried eastern and western medicines nothing has worked. I have also been hospitalized 6 times in the past 11 months. I am a very active teenager I play soccer,basketball,and on the side I’m a 3rd degree black belt in karate. I missed my eighth grade year due to NDPH. But, I’m not done trying to find something to not just help me but everyone who is suffering from this. I’ve made several slide shows to express to my doctors family and friends how NDPH has made a huge impact in how I live my life.

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