Withdrawing: on a video by Lisa Benson

Inspired by my friend Lisa’s video for Migraine.com, I wrote this post on Facebook. Now I am sharing it here as well because I think it’s super important. Lisa identified something that has been bothering me a lot lately, and partially prompted my last blog entry.

 

It’s been a good week. The last day or two, I have been vivacious and social and affectionate with my friends. I have been able to be what I think of as *my best self.*

But just one month ago, being in public with those very same friends (my theatre family) was agony. I’d had a week-long attack and subsequent depression and when I was able to push through, I didn’t meet anyone’s eyes. Or laugh, or talk, and when I did talk I stammered and mumbled. I came late and left early. I constantly wiped away tears either due to panic and sadness, or migraine symptoms. I was emotionally over-sensitive. I winced and flinched from the fluorescent lighting and noise.

In public during a flare or attack, I wear mentholated patches on my head and TheraSpecs on my face. I dose up on medication, increasing migraine’s cognitive difficulties. I hide. At home I’m under the covers in the dark. In public, I will hide behind my hair, or in shadowy corners, or in my car, or in the restroom. I pull into myself, hunching my shoulders. I pile concealer on dark circles and the cystic acne from immunodeficiency and meds. I am a wounded deer in headlights.

The other aspect of a long attack for me, and something not touched on in the video below, is my social media activity. I am a patient advocate for migraine disease. While confined to bed, I share my (admittedly depressing at best, disturbing at worst) feelings about the process. I share my symptoms and how they are affecting my family. I share exactly how I’m feeling emotionally. That can be understandably uncomfortable for people, to read that (as during Cinderella’s tech week) I feel almost like I don’t want to live anymore if I can’t be doing what I love most. Publicly discussing severe pain and illness, depression, and suicidality is taboo. But talking about it is what I do. It is, quite literally, my job.

It is also Lisa Benson‘s job. In this video, she explains why during an attack we can seem withdrawn and changed. It would mean so much to me if people could watch my friend speak for us, describing why we stammer, why we hide. Especially my supporters and much-loved friends at HYT and Julie’s Dance Studio. I may tag you in comments. That doesn’t mean I feel you don’t care. It means I know you do.

Thank you for giving me a voice, Lisa. You’re amazing. 💜 We all are.

12,531 Views

This is a video you can share with close family and friends to explain why we may appear withdrawn or not ourselves when we are dealing with migraine. https://migraine.com/?p=89255

Chronic Migraine Awareness Day

June 29 is Chronic Migraine Awareness Day. One Day out of one (Migraine Awareness) Month that we try to educate others about our debilitating, misunderstood disease. Normally I would post on Facebook and change my profile picture to one of the memes that are circulating, but I am trying to take a break from Facebook, and maybe give people a break from me.

So I’m going to post a few images here, and link a wonderful page of information from the Migraine Research Foundation, and thank you for trying to think a little differently  about migraine as well as other invisible illness.

   
 

The Magnificent Migraine Community

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.

  

  

  

The Migraine Diaries #2: Election Day [2008] available now on Kindle

My second short story in The Migraine Diaries series is now available on Kindle! 

Link to The Migraine Diaries 1Diagnosis [1981]

Link to The Migraine Diaries 2: Election Day [2008]

I am really proud of this one. Writing about myself as an adult is much easier; I am able to use my own true voice much more. And, of course, the memory is much more recent.

J researched the sort of book covers that “sell.” We’ll see…



Migraine365 & Dr. Mitzi

My appointment today with Dr. Mitzi went very well. I explained that my headaches had improved in severity but not frequency, and that I’ve been having a lot of trouble with anxiety. She said she doesn’t often prescribe benzodiazepines, but that she would for me. I told her that I see a pain therapist twice per month and that things are just very stressful right now, and she seemed receptive. She asked if I’d tried Klonopin, and I said no. She actually ended up giving me both Xanax and Klonopin. The Xanax as needed during the day (it doesn’t make me sleepy) and the Klonopin every night for more longer-acting help. I told her I wanted to decrease my Percocet, so she did, and made it clear that a few months was all I’d get of the anxiety meds, but I was really really pleased.

Here is a screen capture from http://www.migraine365.com. J is working on improving the appearance of some of the originals so they’re clearer.



Also don’t forget The Migraine Diaries on Kindle! #1 available now for $2.99 

http://amzn.to/1zdORtr

#2: Election Day [2008] available March 17.

Thanks for your continued support!

~elizabeth