Searching for a meme or pertinent photo about #MHAM on Facebook a few minutes ago to use for this post, I happened upon my own status update from last year, sharing a link to the AMHA blog and stating “a little frustrating that more migraine sufferers aren’t participating in #MHAM.” Ironically, I am writing this entry because a fellow blogger checked in on me, offering extremely kind words of support on my very sad last post of over a month ago, because this year I haven’t been participating, and she was worried (thank you, Skylar).
The migraine community is a beautiful thing. Most of us haven’t met in person, but we support each other like family. Better than family in many cases. Most of us are chronic (of the bloggers I know best, anyway) and the more frequent migraines become, the more stigma there is, meaning a lot of sufferers don’t actually get support from their own friends and family. It can be incredibly isolating. Since I can no longer work and am on Disability, I am quite lonely and have particularly felt lonely this past month. And I am even one of the lucky ones with a supportive partner, caring extended family, and a few very good, kind friends.
Since our beloved almost four year old (and 60 pound) collie mix rescue, Asia, accidentally killed our adorable new baby kitten Onyx right in front of me, a horrifying, devastating incident which I could have prevented, I have felt a little broken. Due to the CGRP study, I believe my migraines are better than they have been any time in the past five years. But lately I haven’t been able to express myself well, or do anything more than what is absolutely required. And, in the open label phase of the study, I seem to be getting all the other symptoms of migraine without severe (or even moderate) pain, which is still debilitating as well as being confusing. Right before we went on our short, whirlwind vacation on June 15, I ended up in the ER, twice, with the weirdest migraine I’ve ever had – I vomited first. Before the severe pain but after two weeks of fatigue, vertigo, phono/photophobia, nausea, allodynia, brain fog, and irritability. I threw up and still wasn’t sure what was going on and then two hours later I was at an 8, and the ER cocktail didn’t work except for about an hour of level 5 pain rather than 9. My second visit the doctor wanted to admit me, which is rare these days and I would have jumped at the chance (my last admit was in 2012) except I would have missed X in her musical, as well as my pain management appointment right before our trip. But the doctor took my suggestion of another dose of pain meds and a prescription for imitrex injections, which I was out of with no refills, and I did break the headache on my own at home. So doing much better than recent years? Still no picnic.
Undeniably though I am improved this year over last year, when I hadn’t yet met my wonderful pain specialist and had just had the worst headache of my entire life which caused me to get an unofficial secondary diagnosis of cluster headaches and an oxygen machine, but no narcotics, which are controversial but DO work for me (every migraineur is different, which my neurologist refused to admit). And yet last year I published a blog post for Migraine Awareness Month every single day.
So that is why Skylar was worried. And I have no explanation for my silence. I feel like I’m in an emotional cage or a deep well. The walls are high and impossible to climb. I give to my daughters but have very little left for anything else. I’m better, but I’m not. If it’s not one thing, it’s another. And I’m tired.
Yes, Migraine Awareness Month is an opportunity for us in the migraine community to be heard, like I stated last year. And I’m so glad I still have that community around me, even though, hopefully only temporarily, my own voice has gone quiet.