Whenever I dwell about what I’ve lost to headaches, like I did on Friday, I eventually come around to thinking about what I have gained because of them. I do appreciate the good days – and hours – that I get. I am more compassionate and sympathetic. I recognize how amazing my friends and family are. I’ve learned to relax and not be so self-critical. I value myself and my body. Some say that I’ve lost my youth to this disease. I can’t deny that, but I am glad that I learned these lessons when I was young so that I can draw on them for the rest of my life.
On one forum where I asked others what they’ve lost, someone started another thread asking what we’ve gained. Again, I won’t share these because of privacy, but the responses were remarkable. Even though the good is often overshadowed by the bad, there’s hope that they’ll balance out one day. We’re a resilient bunch.
I feel self-indulgent talking about this considering yesterday’s reminder of the horrors in the world, but I need to share some of the grief of living with chronic or severe headaches.
I’ve had a nagging feeling for the last month that my version of yoga wasn’t working with my nerve stimulator. The stimulator has a battery box below my collarbone with wires tunneled under the skin over my shoulder, up the neck and to the back of my head. If there is too much stress on the wires, there’s a chance the wires could slip out of place, making the device useless.
With this fear in mind, I worked with an instructor to find poses that we hoped wouldn’t cause problems. In Tuesday night’s class, I could feel the wires pulling and I left worried that this might be the end of yoga. During class today, using even more modified poses, I accepted that class is too risky. I cried so hard, I had to leave. My tears were for losing yoga, but also for the greater losses of this disease.
Headaches steal so much of your life. The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity. Yoga seems minor in comparison, but it is part of my identity. Class is the only time I focus on my body not in pain, but in activity. I don’t feel broken, but am strong and capable. That’s valuable enough that I was willing to risk the only treatment reduces my pain.
After Tuesday night’s class, I was angry and inviting others on some headache forums to share their losses. I won’t name or link to the forums because it would violate the members’ trust, but the responses are heartbreaking.
If you’re comfortable sharing your losses here, please email me at kerrie at thedailyheadache dot com. I’ll post them without identifying you. You might help others accept their losses or explain to their family and friends what this is like. A collective list will make us all feel a little less vulnerable.