I was at a park when my niece was three or four and she asked me to play in the sand with her. There was some reason that I didn’t want to do it, which I told her. Her response was, “This isn’t about you Aunt Kerrie.” I hear her little voice in my head every time I feel like I’m writing too much about myself here.
Usually I pay attention to it. In doing this, though, I’ve forgotten to update you on my progress. So, this is about me.
I haven’t had acupuncture since before Thanksgiving and can’t see that being without has made any difference. I’ve admitted to myself that my superior results after that one visit was probably not related to the acupuncture at all.
I stopped drinking the medicinal tea at Thanksgiving time too. I didn’t even finish the first week’s dose, so I have no idea if it would have been beneficial. I intend to give it another try in the next couple weeks. I stopped both this and the acupuncture because of outside circumstances, and will resume my visits in the next couple weeks. I haven’t given up, but my hopes aren’t high.
My low-pain stretch was brought to a halt Christmas Eve. I’ve had lots of migraines since then. It’s been great to know that the high energy self that I so miss isn’t gone forever. However, I’m more angry about my headaches than I was a few months ago. The what ifs are now abundant.
Legumes and I still don’t get along. I’ve stopped testing specific beans. Maybe some won’t cause pain, but why risk it? I’m starting to associate the smell of peanut butter with pain, which is actually a good thing. I’ll be thrilled when that smell no longer makes me wistful.
I didn’t realize how down I was about all this, but writing this post has made it pretty clear. It never ends and I get so tired of it. It’s hard to not feel defeated. Ugh, maybe it’s better to not reflect on my life.
These posts from other headache bloggers have caught my eye recently.
Terri of Wind Lost has written a beautiful post about grief. I’m not posting an excerpt here because the photo that accompanies the post is vital to what she’s written.
Have You Tried _______ Treatment?
When someone first learns that I have migraine, they always ask, “Have you tried [insert amazing treatment that that person’s neighbor’s daugther had great success with]?” Chiropractic care pops up most often, but hypnosis is also on the list. On Headaches and Movies Laura describes her visit to a hypnotherapist.
“My Pain is Worse Than Yours”
Artin’s co-workers have been trying to one-up him on their medical troubles. I don’t know what other ailments, but what he describes as “red-hot-railroad-spike-through-to-my-frontal-lobe discomfort” sounds pretty bad to me.
So many headache blogs are up now that I usually only get to skim them and I miss a lot. If you’ve written a post that you think The Daily Headache readers would enjoy, e-mail me about it. And if you’re a new blogger that’s not listed on my blogroll, let me know about it and I’ll add your blog.
Indie Cooper-Guzman, WebMD‘s pain management and migraine expert, has recently started a blog on exactly that. Using her knowledge gained as an RN and a chronic pain sufferer, Indie is devoted to educating health care providers about chronic pain and managing it successfully. Through her work with WebMD, she teaches patients a lot too. In addition to a blog, she also moderates the migraine/headache and pain management forums and the back pain support group.
Some of this week’s poignant posts include:
Grieving the Loss of a “Normal” Life is on a topic that many of you know intimately. It’s a comforting post in that it’s a reminder that we’re not alone, but far more comforting are the lessons learned that Indie shares. Yes, you grieve the loss of your life as you know or expect it to be, but you also learn how to live a better life.
“I remember what it was like when I realized my life would never be “normal” again…
“I went through a period where I didn’t want people I knew to see me like I was. I worked extremely hard to perfect my new walk and conceal the slight limp and the fact I would sometimes have to walk by swinging my leg from the hip when it failed to respond like it should. It is something I know I will have to deal with for the rest of my life but I am ok with it now.
“Being an independent female much of my life, I think the hardest thing I had to accept was the fact I would need to rely on others to help with certain things I had ordinarily done by and for myself. I still struggle with that one and probably always will.”
Mandatory Pain Management Education takes a constructive approach to fixing the problems associated with treating pain with opioids — in contrast to my recent preachy posts. She even links to some educational resources.
“Pain and pain syndromes are not going to go away. Mandatory education for all health care professionals, political and health care business/insurance workers, and anyone else who is involved with health care should be considered. It is necessary. Although we all have busy lives, it is time to demand some accountability for the standards of practice in pain management.”
A reader asked me, “How do you and others with daily migraines have a life and not be so depressed?”
I don’t think any of us do avoid it. Sadness is just part of the disease. This is a frustrating answer, but time is the only thing that has made it easier.
I’ve learned to accept what I can and can’t do, and to give in to the pain when I need to. I also give in to the sadness sometimes because there’s no denying that chronic pain sucks. Sure, I spend more time in bed than I’d like, and I’d prefer to cry a little less, but this is my life whether I like it or not.
I try to not get down on myself or feel guilty when I feel bad so that I can enjoy the time that I feel good. And some days I can even convince myself that it’s good to have a day in bed. How else would I find the time to devour books?
Submit a comment to share how do you deal with the sadness.
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.