It’s been a long time since a migraine destroyed my mood like it did Tuesday. It was a scary reminder of the dark thoughts that accompany migraine mood changes.
I was fiddling with a picture for a post and minor frustrations had me nearly in tears. Hart fixed the problem while I sat beside him, closed my eyes and took deep breaths. My mind jumped from Photoshop to “Why can’t I get this diet figured out. What am I supposed to do when a food is OK on one day and then not the next time in the rotation? How am I supposed to eat anything? What if I don’t get it sorted out and the migraines come back full force? I don’t want to do that again.”
As my mind spiraled in fear, I reminded myself to not believe everything I think. Those thoughts I was having? They aren’t Truth, nor do they represent what I believe most of the time. I told myself, “This is migraine. This is migraine. This is migraine. This is not me.” Within minutes of remembering the critical distinction between me and migraine, all the anxiety and frustration melted away.
Then I was amazed at how far I’ve come. When a migraine hijacked my mood even a couple years ago, I’d respond by dwelling on every dark thought that crossed my mind. Now I know to shut down those ruminations because they hurt far more than they help. Realizing I’ve learned to pay diligent attention and respond to all the minute migraine-induced changes (mood and otherwise) fills me with gratitude and pride.
Through much research and work, I’ve made tremendous strides in my physical health. I have worked just as hard at changing the way I react to and cope with migraine. As proud as I am of the first achievement, the latter may be even more meaningful. While my physical improvements may not last (in fact, I’m having all sorts of food issues and averaging two migraines a day right now), I can always rely on the strategies I’ve learned to ease the burden of living with chronic migraine. As the saying goes, I can’t control migraine, but I can control the way I react to it.
I’ve had intermittent bouts of inexplicable sadness since I returned to Seattle after Christmas. Always worried I’m going to slip into a clinical depression, Hart and I watch closely for warning signs. How I’ve felt just doesn’t fit the profile, but I’m rarely sad without reason unless I’m depressed.
Could being cooped up in my house with migraine after migraine, and not seeing or talking to friends and family have something to do with the so-called inexplicable sadness? Hmm.
I’ve hidden from the cold, windy, rainy weather that’s descended upon Seattle. It seems colder and wetter than usual, but maybe I’m revising history. My scalp hurts when rain, even the slightest drizzle, hits it. Wind or extra-chilly air increase my head pain.
Yesterday was warm and sunny (that’s Seattle-speak for 50 degrees with a light wind, a sun-shaped glow behind the clouds and a few visible blue patches in the sky). My head wasn’t any better than it had been, but I was in such a great mood. I walked a couple miles, did some grocery shopping, went to two appointments and had dinner at one of my favorite restaurants. That’s more than I did in any week in January!
I went into hibernation without even realizing it. Eventually sitting in front of the cozy fire became oppressive — the opposite of the comforting home it usually is. In the name of keeping warm and not exacerbating my head pain, I withdrew from the many activities that make my life good. I thought I was taking care of myself, but was making things worse.
I emerged into the world yesterday and it was glorious. The weather won’t hold, of course, but I hope the glimpse of sun will keep my new perspective in place.
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.
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.