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pain: chronic / words: iconic

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Murderball: Massacring Misconceptions

by Janet Jay January 17, 2022
written by Janet Jay
background clip art of two quad rugby players, text: "Massacring misconceptions, Murderball, the quad rugby doc that changed the way i thought about disability, janetjay.com

Murderball: Massacring Misconceptions

The quad rugby doc that changed how I thought about disability

Wanna watch Murderball? Stream it legally on Philo or Fubo.tv, using your library card on Kanopy, or for free on this random (I’m sure illegal) site here. Youtube also has multiple full copies of it up.

Here’s a TL;DR up front: If you’ve never seen Murderball, go watch Murderball. It’s a hell of a sports saga about quad rugby (murderball) teams, international rivalries, and competition at the highest levels. It’s also a human story about people who have been through some shit... and come out the other side with pride, self-confidence and the desire to slam into others in an armored chair. The quote below, from a many-year veteran of the sport, sums it up best:

Text on yellow background: "The critics got one thing wrong: Murderball doesn't dispel myths and stereotypes.  It takes big fat bites out of those sugary sweet, pathetic images and stereotypes, chews 'em up and spits 'em out. It's not a magic pill that will make pity and stereotypes go away, but it is quite simply the best film ever made on disability.  It amazes me that these filmmakers were able to render such an honest portrayal of living life from the seat of a wheelchair.  Somehow, either by the sheer exposure to the people or by some innate understanding, directors Henry Alex Rubin and Dana Adam Shapiro "got it," and this film is a joy to watch, especially the way we did, with family and about 12 other quads. This movie is funny. It is sad.  It is fiery, fast, frank, explosive, sexy, tender, loving, and the action is bone-jarring, just like quad rugby, aka Murderball. - Ed Hooper"
Read Hooper’s full review here.

Killing it on the court

What even is the game of murderball (aka Quad Rugby)?

Quad rugby, originally called murderball, is a sport for people in wheelchairs who don’t shy away from, well, anything. It’s a weird mish-mash: played on a basketball court, with rugby-like interaction, using a volleyball and end zones like a football field.

“The chairs look like tricked-out bumper cars, with bucket seats, safety harnesses, angled wheels, and grills to protect the feet. When they roll over, the guys go with them,” explained the film’s producer Dana Adam Shapiro. 

The rules go like this: four players on a side, ranked on their mobility on levels from .5 to 3.5, depending on their ability to move their upper bodies. Team mobility rankings cannot exceed a total of eight, so teams have to find a balance. “The most mobile players handle the ball,” said Shapiro. “The low-pointers act as human speed bumps.”

The documentary Murderball, disability theory and me

Promotional image of the DVD case for the film Murderball with the tagline "dream. believe. achieve."

Murderball came out in 2005 and in some ways, it really changed my life.  Today, between my freelance journalism, my work with the US Pain Foundation and my writing here on janetjay.com, I’ve spent the last few years pretty firmly in disability spaces. So it’s not easy to wrench my brain back to where I was in 2005. I was only beginning to learn to advocate for myself and constantly struggling with the idea of what qualified as “disabled,” or even just “disabled enough.”  I wasn’t in a wheelchair so it didn’t apply to me, right? With my life-warping invisible disability I didn’t fit in with the able-bodied, but there wasn’t a home for me in disability spaces either. (At least that’s how it felt.) And I certainly didn’t have anybody I could ask who had been through something similar.

Off the Court

Murderball is the opposite e, like the paraplegic and quadriplegic members of the quad rugby teams featured in the film. (Now one of the highest-grossing documentaries of all time!) But there’s more to it than what’s going on on the court. The film spends a lot of time showing the daily lives and routines of these men (and they’re all men), talking about how life has and hasn’t changed for them, in terms of health, sex, family, sport, and how they’re perceived. 

“One thing that’s cool, when you’re watching [Murderball] with an audience: People first start watching the movie, they see us as, ‘Oh my God, these guys are in wheelchairs.’ And then, it becomes, ‘Oh my God, these guys are in wheelchairs playing a sport.’ And then, finally when it’s over, they’re not seeing the wheelchairs anymore, they’re just seeing us as athletes.”

Seth Hogsett, Team usa

Abilities, Assumptions, and Attractions

Misconceptions swirl around these guys, mostly about what they’re capable of (answer: just about everything you’re capable of). The kind of life-changing accidents that the stars of Murderball underwent certainly affected their lives and how they grew and evolved as people, but those accidents don’t change who a person is at their core. These are guys who are athletes, who are thrill-seekers, who found their way through the darkness of their medical trauma into a new life that they have to navigate.  If you’re an adrenaline junkie before breaking your back trying to jump a dirt bike, you’re not going to be thrilled with playing cards after your accident. Murderball– quad rugby– is for THAT kind of paraplegic.  

Front shot of Mark Zupan wearing headphones and using a quad rugby wheelchair
Mark Zupan training

“The guys we got to know get up earlier, exercise longer, eat healthier, travel more, get hotter girlfriends, and most of them can kick our asses,” said Rubin. One of the most… let’s say “engaging” parts of the film is a frank discussion of sex, from how people beat around the bush (pun not originally intended) about the question of whether someone can get an erection to different strategies for getting it on despite physical limitations.  (However, they also talk about playing up their limitations, “acting pathetic,” to get women. Which is… sad and gross and scuzzy. But some people are like that, sadly, and these are just people.)

…And weighing risk

Unfortunately, quad rugby isn’t for everyone. It’s dangerous– these players are absolutely risking further disability. And only certain types of disabilities qualify to play. And chairs are ridiculously expensive. Coaches spoke of having to turn away many who were inspired by the movie but didn’t qualify to play. 

Head shot of Mark Zupan smiling in front of the USA olympics logo
Mark Zupan being interviewed

Deconstructing (Some) Defaults

How the film came to be, and the ways it changed the views of its able-bodied filmmakers, is an interesting story. First, editor Dana Adam Shapiro stumbled over a newspaper piece discussing the rivalry between two local quad rugby teams. I think many people would react the same way he did: “The article was pretty mind-blowing for me, because I had thought all quadriplegics were like Christopher Reeve — very mild-mannered and weak and fragile. Not playing this violent game and driving and having sex. I guess in my ignorance, I didn’t think quadriplegics would talk like that. And all of those stereotypes just started falling away.” 

“The premise sounded horrible,” admits Rubin. ”If there was a documentary about disabled people on TV, I’d want to switch the channel to CSI. But you meet these guys and they just completely subvert every cliché you’ve ever had about someone in a wheelchair. They listen to speed metal, they drink Jägermeister, they pop Viagra, they have hot girlfriends, they play poker, they call each other gimps and cripples. And Zupan, he’s a filmmaker’s wet dream. That guy is so brutally honest, there’s not a fake bone in his body.”

Newly paralyzed Keith sees the condition of the bike he crashed
One of the most moving moments in the film is when newly paralyzed Keith Cavill sees the condition of the bike he crashed

The action sequences are all Murderball but the heart of the doc is its characters and their struggles. “Quad rugby was this great MacGuffin that got you into the room and created this structure and was very visual,” explains Shapiro, noting that there is only about nine minutes of actual sports footage in the 86-minute finished product. “But, at the end of the day, you know, the story is hard to tell about what it’s like to break your neck.” 

Living A New Normal

One of the most compelling threads in the film is that of Keith, a newly paralyzed 20-something in the process of examining his new world and its limitations.

For me, the most moving bit had nothing to do with murderball at all. It was the scene where Keith comes home from the hospital for the first time, up the new ramps to the front door, into the room he’s now stuck sleeping in because he can’t go up the stairs to go to his own bedroom.

It’s a quick moment, blink and you’ll miss it, but it’s the most honest in the film: Keith looks around, obviously haunted by who he used to be, as his family tries to be optimistic. And he can see them trying, and he tries to be optimistic for them, but he breaks, clutching for perspective but breaking the way anybody who went from healthy to a serious disability knows too well:

“Preach all you want– it could have been worse– but what’s normal will never be the same.”

keith Cavill, murderball

For him, as for many others, quad rugby promised normalcy, competition, masculinity. It was one shining hope, a lifeline among the new limitations that would define the rest of his life. And it’s obviously not just the sport, it’s the people. It’s the community and the understanding, both of the limitations of quad life and the desire to still take risks and experience thrills.

We don’t all have disabilities that let us have these experiences, but it’s impossible to watch and not feel that yearning, that passion, that drive to continue to compete and achieve physically. If you have a disability, this film and these characters will resonate. If you don’t, it will teach you something. Either way, it’s a hell of a film that I cannot recommend highly enough.

Text: "Massacring misconceptions: murderball, the quad rugby doc that changed how i thought about disability, janetjay.com" on yellow, blue, green background with images of mark zupan and another player while playing

When I started, this post was going to be a fun quick recommendation of a great documentary I remember loving. As I got sucked back into it, I started thinking more about masculinity, normalcy, assumptions about sex, and the gross way that the dudes in this film go about “acting pathetic” to get women.

There’s been some fascinating work done by academics analyzing the film over the years since its release, and, well, I’ve ended up with a whole other post a-comin’ on that topic.

So while you watch, keep in mind questions like “what is normal,” “what is manly,” and “what other questions should these dudes be asking themselves once in a while?” Are their social choices and actions, especially towards women, justified? Understandable? Scummy? Manipulative? A fair response to assholish cultural assumptions about sexual inadequacy? All these things and more? I honestly have mixed feelings on the whole thing, and I’d love to hear your perspective.

All the visuals from the movie I use in this post are thumbnails that were released as part of the official press pack. though there’s no way to actually contact them anymore for actual permission / full quality images (trust me, I tried)

January 17, 2022 0 comment
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chronic painComplementary medicineRecommendationsStuff (physical items)Uncategorized

Gift Guide For Chronic Pain — UPDATED FOR 2021!

by Janet Jay December 14, 2021
written by Janet Jay
On a background of stars text reads "Gift guide for chronic pain: updated for 2021, janetjay.com"

Christmas is coming! (And my birthday too… just sayin’) and that’s got me thinking about all the little gadgets I continually recommend to my friends. Some of this stuff took me 20 years to learn about (theracane, where were you all my life?!) and some are old standbys that can help a surprising amount. Here’s a gift guide for chronic pain patients full of guaranteed wins– mostly items I currently own and use myself. (Of course, if you have chronic pain yourself and this stuff sounds rad, I say treat yo’self.)

Full disclosure: I am posting these options with Amazon affiliate links, because why not, though if you have a local business you can buy from I very much recommend and prefer you go there instead. I’ll also just leave the link to my Patron here, just in case anybody would like to buy me a cup of coffee.

NEXT UP: Updated gift guide for chronic pain patients in the hellyear 2021!

Standing Strong

 For me, standing is one of the most difficult, painful things there is. For instance, cooking is really hard for me, given the amount of standing it requires. But once I got a gel anti-fatigue mat, it made the process easier. And it doesn’t have to be cooking of course: does the person you’re shopping for stand up to do stretches and PT while they watch tv? Do they have a standing desk of some sort? Whatever it is, grab one of these mats. They’re not all black and ugly, either (though of course, some companies had to cock that up).

View from behind of an african american man sitting at a desk on a yoga ball seat, stretching his arms
There are a ton of slightly different varieties of these yoga ball seats… if you have one you love, let me know!

Desk the halls (sorry, sorry)

Speaking of desks… almost everybody can benefit from making their workspace more ergonomic, especially for people who found themselves suddenly thrown into working from home last year.

(What makes a desk ergonomic? Here’s some great info from the Mayo Clinic and a super simple piece from the NHS called “How to Sit At Your Desk Correctly”.)

A good, supportive desk chair is the biggest thing, but I don’t know enough about the options to recommend anything. Luckily, there are tons of other cheaper options that can help too.

  • Yoga ball for sitting and stretching
  • I’ve always wanted to try one of these yoga ball seats, too
  • Ergonomic wrist and mousepad (there are a hundred different versions of these, of course)
  • Laptop stand for your desk to get it up to eye level
  • A good, ergonomic lumbar support cushion (this is another item where there are a thousand slightly different versions)
  • If your desk is like mine,a keyboard on top is too high to be ergonomic. Grab a little add-on keyboard tray and bring it down to your level.

What do you use to make your desk more ergonomic?

Vibrate at your own frequency

I love my little (well, bigish) back massager. To get it out of the way first: yeah, you can use it for, uh, “me time.” But for someone in chronic pain, that’s just one of a number of helpful uses (…and an ENTIRELY different type of blog post). Obviously they are good for tight muscles, but I also use mine on my temples, scalp and occipital bulge (the bumps where your neck attaches to your skull) during the worst of my migraines.

There are tons of different models with different variations: these hardcore Theraguns, which I’ve never tried but have a friend who swears by. The best hardcore “personal massager” brand is the Hitachi Magic Wand, which is strong enough that it has therapeutic uses outside of getting off.

I personally have this off-brand massager, but I really like that you can change out the “business end” (wow, there’s no way to say that without sounding gross)… anyway, like you see in the pic to the right, it’s got all these different heads on it that you can switch out depending on what you’re using it for. (I wish I could embed this video of it, as it’s a damn party groove.)

Heat it up

Back buddy heating pad

All heating pads are not created equal: so-called “moist heat” is a lot more effective for pain than the dry heat of an electric blanket or something. Bed Buddy is a brand of heat pack filled with organic materials that you throw in the microwave for a couple of minutes. In my experience, they last for years and are massively helpful for sore, tight muscles. They even offer them with built-in aromatherapy, if that’s your jam. 

Stretch it out

Woman helping man stretch using resistance bands

There are all sorts of exercises you can do with resistance bands— if you’ve done physical therapy recently, they may have sent you home with some. But if nothing else, they’re fantastic for stretching. That’s why I recommend everybody have at least one resistance band– when you’re feeling stiff, it really helps you stretch out tight muscles. 

vive calf stretcher
Vive Calf Stretcher

The last time I went to physical therapy they had this little plastic thing called a foot rocker that made stretching tight calf and leg muscles SO easy that I went home and immediately bought one for myself.

It also came with a spiky ball that is absolutely perfect for working out knots in your feet– when my plantar fasciitis is bugging me, this is the first thing I grab. (It also includes an app, which I didn’t know about until three seconds ago when I went looking for that link.)

Grab it

the HMS Grabber reacher being used by a person in a wheelchair to pick up keys
The Grabber in use

A couple of years ago my L5-S1 herniated and i was taken to the hospital screaming, and eventually underwent an emergency laminectomy. I was sent home with a corset brace that supported my back but didn’t let me bend over (not like I would have been able to bend over without it, because of the pain). As goofy as it looks, a little grabbermajig like this turned out to be incredibly helpful.

Every little bit of independence is worth it. This article, “Three Things To Consider Before Buying A Grabbing Tool,” goes through different options that specialize in long reach, firm grasp or great value. I ended up buying a “featherweight” model that did everything I needed it to.

For a fancier model with a rotating head and a bunch of other options, take a gander at this demonstration video for the RMS Grabber Reacher — the grabber is illustrated with CGI and there’s an inspiring soundtrack that swells like the moment in a Disney movie where the hero triumphantly decides to fight on the side of good or whatever.

Step it up

stepper
Woman uses stepper

Getting regular exercise can be incredibly difficult with chronic pain– no matter how much you rationally know it will help in the long term, when you’re just struggling to get through the day it can be hard to force yourself to do something that’s only going to make you feel worse in the short term. (Damn you, pain cycle!) I live in Texas, land of “nine months of summer per year,” and if it’s hard to exercise regularly, it’s way harder when it’s 100 degrees outside by 11 am.

Enter the stepper! I like to hop on it while watching something and zone out. I have the model on the left, which has stretchy resistance bands you can use with your arms, but you can also get a version that has a handle if you’re more concerned about ergonomics or need extra support. (Of course you could buy a stairmaster or a treadmill, if that’s your price point, but until I got this as a gift I had no idea that $50-$100 could buy me something that’s just as good).

Mobilize it (& work on that chi)

man lying down uses chi machine

I hate the name of these things–“chi machines”– because I feel like whatever it does for your “chi” is a lot less important than what it does for your muscles and joint mobility. You lie on the ground, put your feet in the little foot slots, and then turn it on so that it’s gently moving your legs from side to side with a swimming or wavelike motion. Note: START SLOW! This is one of those electronics where there are some really crappy knockoffs out there. The bare minimum you need is that your chi machine has a speed controller, and has soft footrests instead of hard plastic. This is the exact model I own and it’s served me well for…. eight years? Dang.

Massage it yourself

Man uses orange thera cane

For real y’all: get yourself a dang Thera cane. I’m legitimately sad that I didn’t hear about these amazing things until just a couple of years ago. A Thera cane is a plastic doohickey (technical term) that looks like the kind of old-timey exaggerated cane that would be used in a cartoon to pull someone offstage when they’re bombing in front of a crowd.

You can use it to massage out knots anywhere on your entire body, by yourself, no matter where it is. As someone who lives alone it’s absolutely invaluable for those can’t-reach knots in my shoulders.

Pro tip: you can put Icy Hot, essential oils or whatever you want on the knobs too! Seriously, the basic model and one that comes apart for ease of transport are both under $30. I just have a basic blue one and it has been a huge help to me; I can’t recommend this gift enough.

Prop it up with a lap desk

Lap desk with pillow & wrist cushions, used by someone reading book

Lap desks are important for anyone who spends a lot of time in bed or on the couch with their computer. It serves a number of purposes: it keeps your computer stable as you shift around under it, it raises it up and tilts to make the whole process more ergonomic (I particularly like models that also have a wrist cushion, like this one).

Another similar option is what’s called a lap table or bed table. It’s like a lap desk with legs; it reminds me of those trays that you see people on TV serving breakfast in bed on. Most lap desks have foldable legs that allow it to transform into a more normal lap desk, though without the cushioned bottom. There’s a huge range of options, from the most simple— a horizontal surface with folding legs– to the extremely complex, with cool materials, adjustable angles, integrated fans, and a hundred other little cool tweaks.

Soak it

shea butter moisturizing epsom salt

Three words: epsom salt baths. Epsom salt baths are a type of complementary medicine that actually works for me, and I know other people who swear by it (I recommend this stuff so often that the people in my chronic pain group are probably sick of hearing about it.). If you have super tight muscles and achy joints, it can really make a difference. On one hand, I have found a ton of personal relief from epsom salt baths and have had medical professionals explain how they work… on the other hand, I just this minute discovered that there’s not a ton of evidence actually supporting its efficacy for pain relief.

All I can say is that I can personally tell a noticeable difference in how I feel getting out of a regular bath vs an epsom salt bath, but take my opinion with a grain of [epsom] salt (sorry, sorry, i’m trying to delete it). Anyway, regular epsom salt does the trick, but you can also buy versions scented with lavender, eucalyptus, and other calming scents, a special moisturizing formula with shea butter, and more.

What other stuff should I include on next year’s gift guide for chronic pain?

I know I’m almost certainly forgetting nine million great doohickeys, thingamajigs and whatchamacallits. Leave a comment or give me a shout on social media and tell me what I need to add to the gift guide for next year!

December 14, 2021 0 comment
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chronic painPersonal experienceRecommendationsStuff (physical items)Uncategorized

So Much More Than a Headache: What’s Your Migraine Routine?

by Janet Jay July 1, 2021
written by Janet Jay
So much more than a headache: what's your migraine routine? janetjay.com
Turquoise background with clip art of a head with a brain with an arrow pointing to the brain, text: "So much more than a headache, what's your migraine routine, janetjay.com"

I have been coping with chronic migraine disease since my teens. But now that I’ve got a migraine routine down, it makes the whole situation a little bit more manageable. Here’s what a day with a migraine looks like for me and how I deal with it.

When I have a migraine, the people who know and love me can tell just by looking at my eyes (occasionally even before I’ve realized it!). I can see it too: I slow down. I squint a little..You can just see in my face how much extra effort I’m having to put in just to do the most basic stuff.  That’s only one of the reasons you want to get your migraine routine down pat before the worst hits.

Partners of people with migraines: ask them how you can help and listen to what they say! It could be as simple as a soda, a neck massage, heating up a heating pad for them, or just a couple of hours of golden silence. But you’ll never know until you ask. But I’m getting ahead of myself. Let’s go through my migraine routine.

Yellow art of torso with folded arms and exploding head. Keith Haring, Untitled, 1983
Keith Haring, Untitled, 1983

The pain is coming! Lock down your migraine routine before it hits.

Sometimes I wake up with it lurking, sometimes it creeps up on me in the early afternoon. Always, there’s a moment of recognition. I realize the light is hurting my eyes, or my thoughts are fuzzy, or I’ve been rubbing my forehead for 20 minutes without realizing it.

I immediately go take my abortive. The Maxalt will make me a little fuzzy and logy but also might be able to head the worst of the pain off at the pass. (Maybe.)

A migraine hurts in a specific way that’s so different than any other headache. It lives behind my eyes and forehead. It makes the skin on my head and neck incredibly sensitive to the touch and achy. In fact I’ve used a giant back massager thing on my temples and occipital bulge (the bumps on the back of my head) so much that the next day I woke up with near-bruises. But when it’s one of the only things that gives momentary relief, what are you gonna do?

Don’t forget to gather your migraine routine thingamajigs

I wish I had someone to rub my head and neck for me, but until then, I love my damn Theracane so much (my gift guide for chronic pain post goes into more detail about why). A dear departed friend made me a special concoction of oils I use, but it works similarly to products like Biofreeze or Icy Hot. Might be worth trying next time you’re in this spot.

I also just bought a goofy thing on a whim called a “jade facial roller and gua sha scraperi” which is supposedly supposed to fight wrinkles… somehow, idk, but I’m finding it surprisingly useful for headache times. It’s basically just the difference between “rubbing at my head with my knuckle or whatever’s handy” and “rubbing at my head with a piece of stone shaped to fit my face,” but it really does feel good on very sensitive migraine skin. For something you can get for $5 it may be worth checking out when you see one on sale.

Want more ideas for stuff that’ll make your life easier? Check out my newly updated gift guide for chronic pain! (And then shout at me on social media to tell me what I forgot to include.)

Vintage comic frame of red-headed woman on beach, crying and touching her forehead, thought bubble reading "this horrible feeling inside me!"

It’s here! Get that routine rolling

I try to find something with caffeine in it, usually a soda with some sugar in it as well, as that seems to help for whatever reason. I also take a hardcore muscle relaxant, as sometimes my always-too-tense muscles are a contributing cause and I have the tolerance of an elephant. It has the very nice side effect of also making me sleepy. If I can manage to fall asleep for a few hours, a lot of times I can kick the migraine. Don’t know why, but a nap is way more likely to kick it than the same two hours spent just resting on the couch. 

Migraines Through Rose-Colored Glasses (Not A Metaphor)

Lights go off, and on go the special migraine glasses I got in a swag bag at a migraine conference I went a couple of years ago called RetreatMigraine. They’re not cheap (though there is a money-back guarantee so you can see if they help) but they truly do make it so the light doesn’t hurt my eyes nearly as much– plus, I get to make “rose-colored glasses” jokes. I don’t know how, but I’ll embrace anything that helps me avoid that stabbing pain during a migraine. (I just bought new everyday glasses and noticed that other brands like Warby Parker and Zenni also offer lenses that block certain types of light, so depending on your particular issues & price point, that could be a better option to try.)

In a weird twist, marijuana is guaranteed to make my migraines worse. It helps just about every other aspect of chronic pain I’m dealing with! (I mean, that my friend is dealing with, as my… friend… and I live in Texas where it’s still entirely illegal, even for medical patients.) But one thing that can alert me them to a developing migraine is if I they smoke a bowl and feel worse. Bodies: they’re super weird! Some people certainly do benefit from cannabis for migraines.

At the end of the day, the whole migraine experience is a giant “throw treatments and recommendations at the wall and see what sticks” situation. Nobody can tell you what will make things better or worse for you. All I can do is tell you what I’ve learned about myself, and how.

This is my hurting-too-bad-to-put-on-makeup ‘as cute as I can be with a migraine’ shot. It’s not a good look.

Migraine Braine

After all that I’ve got brain fog from the migraine, fuzziness from the Maxalt, and a muscle relaxant hopefully kicking my ass in a helpful way. What do I do? Cancel plans, sit in the dark, and watch something on TV that doesn’t require much mental effort.

Even if I can manage to force myself to do something, I’m working at a third the speed and a quarter the mental comprehension as normal. It’s hard to explain Migraine Braine but “fuzzy,” “spacey,” “logy” do an OK job.

So Much More Than A Headache

It’s not just a headache: brain fog is real and can affect you before, during, or after a migraine. It’s hard to concentrate, hard to remember things, hard to focus, hard to really force yourself to do anything when you’re in that position.

Paying the Next Day

The day after a migraine is always rough, trying to force your brain to focus and move at normal speed when it’s the last thing you want to do. Even though words are kind of my thing, I’m coming up empty trying to describe brain fog. It’s both like and unlike so many other things.

It’s not like what your brain feels like the afternoon after staying up all night, but sorta. It doesn’t feel like being forgetful and scatterbrained, though that’s part of it. It’s kind of like everything is twice as far away from you as it should be, metaphorically, so anything you do requires an extra step. Does that make sense? Sorta? It’s the best I’ve got right now.

Somebody out there must have figured out a better way to describe this! Please comment below or shout at me on social media. How you would describe the brain fog of a migraine?

Connecting with others with chronic migraine

Attending a migraine retreat really pulled into focus for me how many people truly are debilitated by migraines, not just when they have them but in having to rearrange everything around the possibility of an attack. Some people have migraine the majority of the time; some people spend most of their lives in a dark room. I go through cycles of migraines (i wish I knew why!) where I’ll have them two or three times a week for a month or two and then it’ll subside for a while. I’ll only get one a month for a while, and then it’ll come back again, with no warning, rhyme or reason that I can come up with. I’m lucky to have a job that understands and accommodates that, because many don’t.

Migraine disease can change your entire life, but it doesn’t have to ruin it: over the last few years I’ve written multiple profiles on people with chronic migraine who are still able to live and achieve their dreams despite and through migraine disease.

My migraine routine is nothing special, it’s just how I do it. I’d love to hear what other people do when they feel one lurking in the back of their skull about to break through, or how the hell you’d put into words what ‘brain fog’ feels like. What migraine routine have YOU come up with to help you through these miserable periods?

July 1, 2021 0 comment
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acupuncturebiofeedbackchronic painComplementary medicineHealthcare / MedicinemassageMental healthPersonal experienceRecommendations

Complementary Medicine: What Works and What Doesn’t

by Janet Jay November 22, 2020
written by Janet Jay
complementary medicine: what works and what doesn't, janetjay.com

Introduction:

Complementary medicine is not most people’s first choice. My pain started when I was 15: nobody knew what was wrong or how to fix it (I didn’t get a diagnosis or explanation for well over a decade), and after all the doctors threw up their hands, we were grasping at straws. My mother, bless her, dragged me to everything she could think of to help me, even stuff like hypnosis that I wouldn’t have chosen for myself. 

Over the last 20 years, I’ve tried (and retried) many more options. Some of them helped; most of them didn’t. The majority of complementary treatments I’ve tried have been an expensive way of pissing money away. But there ARE things that can really, truly help. Everyone is different, and everyone’s pain is different. But here’s what helped me– and what didn’t.

What is complementary medicine?

To put it simply, it’s a treatment that you use in conjunction with conventional medicine. Just as alternative medicine is used as a replacement / alternative for conventional medical treatment, complementary medicine complements the treatment plan your doctor has in place. The term “integrated health” is sometimes used to describe a holistic approach where conventional and complementary approaches are used together in a coordinated way. Out-of-pocket spending on these approaches for Americans age 4 and older amounts to an estimated $30.2 billion per year, according to the 2012 NHIS— almost 10% of OOP spending on healthcare. Money is a huge concern when discussing complementary health: while insurance may cover some of these treatments, most of them are going to be coming from your pocket.

NGL: this is much of complementary medicine

I’ll just put this out at the very start: I have a very low tolerance for woo. If it helps you? Godspeed! I’m not going to pooh-pooh the idea of finding help wherever you can. But I write about and am a big fan of science so I do like a treatment that’s supported by research. 

Just how many types of complementary medicine have I tried?

I used this list of complementary therapies as a guide. The below list is at least most of the complementary therapies I”ve tried in the last 20 years: the helpful, the not helpful, the scams and the genuine relief. I plan to write individual posts about the few treatments that truly helped me and at least one post about all the ones that didn’t. But here they are:

  • Chiropractor*
  • Hypnosis
  • Biofeedback
  • Aura / energy work
  • Reiki
  • Trigger point injections
  • Massage
  • Myofascial body work
  • Cranio-sacral body work 
  • PT (esp water therapy)
  • Occupational therapy
  • Acupuncture/electroacupuncture
  • Cupping 
  • Dance therapy (sorta)
  • Diet changes & food supplements
  • Relaxation / Guided imagery
  • Heat therapy (particularly ultrasound) 
  • Meditation, mindfulness and relaxation techniques 
  • Reflexology
  • Steam room
  • Water therapy 
  • Yoga
  • Meditation
  • Mental health treatment

* I have been in constant pain since I was 15 because of a chiropractor. Please, please, please do not go to a chiropractor, and if you do, look up their education and training, and even then do not let them crack your neck. (There’ll be a post about that too, eventually, but I wanted to say it here first.)

So what worked?

Stay tuned for specific articles about biofeedback, massage and bodywork like myofascial release, acupuncture, and mental health care as complementary medicine for chronic pain, as well as a roundup article of the other few that gave me some relief. I’m also working on a post about what treatments I feel to be the biggest waste of time and money.

November 22, 2020 1 comment
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