There’s a difference when an ADHDer says “it’s been one of those ADHD days”.

This is how I started writing this post, and then realized, remembered the fact that—frustratingly—the term “I’m so ADD today” is thrown around like it means nothing.

Yes. I have ADHD every day. But there are some days—like today, when I can just feel the chaos in my brain intensify as the clock keeps ticking—from 6 PM onward because I took my morning Concerta at 6:20 AM and didn’t—again—manage to actually get my afternoon dose into my body. I can feel that difference in how my brain feels. 

The thing is, whether it’s a less-well-managed ADHD day like today, or a more holistically approached day with my ADHD—one where I take my meds when I am supposed to, and get a decent amount of exercise, and get grounded with meditation and all that stuff—I still have ADHD. No matter how I choose to approach it, I still have ADHD, like I’ve had my whole life whether I knew it or not, and like I’ll presumably continue to experience the rest of my life. 

I’m not about to get into the positives/negatives of ADHD. Honestly, it’s great to hear those things being discussed candidly, but it’s also at times a bit overdone. ADHD is just a part of me—at least that’s how I feel tonight.

Why neurotypical people misunderstand ADHD, or classify their five minutes or inattention or an hour of distraction once in awhile as “ADD-like” is that ADHD behaviours are typical human behaviours. It’s confusing, I get it. With ADHD, we experience these things—impulsivity and/or hyperactivity and/or inattention symptoms—exponentially more frequently than people with typical brain chemistry. The difference is that after a non-ADHDer’s hour of distraction or brief lapse into impulsivity or “off day”, they return to a normal level of functioning—they get a good night’s sleep or do something to recharge and they’re back at 100%. 

Everybody’s ADHD looks different—some of us also experience certain symptoms associated with ADHD—or ADHD in general—more severely than others, and we all have different combinations of symptoms.

But a moment, an hour, or even a single a day of these kinds of symptoms does not at all mean that you’re having an ADD day. Because part of having an actual ADD day is knowing that you get to wake up and start all over again, with your same quirky brain. And depending on what factors are at play, who knows what that’ll look like.

I don’t know what non-ADHD life is like. I guess it would probably feel restful to even have one day off—even in contrast to having stimulants on board. Then again, if I just got a day off, I’d probably be bored partway through of normal brain life ;).

My ADHD life looks different every day. And it confuses even me, though you find patterns sometimes. (My ADHD might look different every day because I don’t remember or because shiny things. I don’t know. You couldn’t expect me to get through this without a shiny reference right? You also only find patterns when you pay attention…). But I know that this is the reality I live in. ADHD is a part of it—legitimately. It’s a whole mix of things, not awesome or terrible, i just is.

So help all of us with ADHD out if you don’t have ADHD, please.
Say you’re really distracted.
Say you’ve got too much energy.
Say what you’re feeling, that’s cool.
Please, though, don’t compare your off day to ADHD.
It’s not the same thing. 

I started this on Sunday. You know, ADHD. Point is I am finishing it and I still did the plank and meditated. BOOM. (Mostly.)

The thing with ADHD is that unless you have it, it’s hard to totally understand. Or as the folks at ADHD U say, “If you don’t got it, you don’t get it!”. While ADHD is variable and no two of us are alike (like, of course, with just about any diagnosis), community helps.

The ladies—especially our team of administrators—at Smart Girls with ADHD are equally good at providing empathy and laughing at ourselves for the things we do… At volumes that only ADHDers seem to do those sorts of things. Even when I am not posting or responding frequently, if I do something that the other ladies will relate to—usually funny, sometimes frustrating—I will most often pop over to the group and share it! It’s fun to see the comments come in of other girls’ stories from the preceding few days saying “I get ya!”

Community is important to know that you may be different from most people around you because of ADHD or LD, but that you are not alone. I shared a blog post earlier this month, and I always don’t know how to feel when I get a response like this:

Mostly, I am overjoyed that someone knows that we get it. However, there’s still a part of me that still hurts because we are so enthusiastic to find people that get it because of all those who don’t get it. This, though, is why community is so important—and for me, an important part of self-care, one that I can choose to access more when I need it, and less when I don’t. Because when nobody gets it? The ADHD community—whether that’s our Smart Girls (or the Smart Girls admins), the #ADDcheckin tweeps, or just sending off a message to a friend who I know gets it, like Aaron or Jess if I’m needing to be a tad less public about the whole thing.

I’ve said it before about chronic disease, but it really applies to ADHD too. Find your people, your community. The ones that get you. Even if they’re halfway across the country or the continent or the world, my little neurodiverse, ADHD community is so important to me to have—to know that even in my brain’s quirks, other people have the same variation of normal that I do. And just having that safe space to share or rant or whatever is so important, and often reminds me that yes, patience is important and that applies SO MUCH to being patient with myself, too.

adhd fact friday

Week One Fact:

ADHD is a neurodevelopmental disorder. ADHD is caused by genetic and biological factors that affect how the brain develops. Like most neurodevelopmental disorders, it can be mild, moderate or severe, and affects each person differently.

Challenge Update Day 7:

Meditation: Body Scan meditation last night, 8 minutes.

Plank: 85 seconds down—think my form was better than yesterday but it was hard. I get two more 85 second days so that should be doable.

I always set alarms. Even if I go to bed with no need to get up and an alarm set for 11 am, I always set alarms so SleepCycle does its magic. Last night, I fell asleep amidst the beginning #MedXHangover, without setting an alarm. Ten hours later (I woke up a few times, briefly), Fitbit informed me I went to bed at 11:13 pm, and slept for exactly ten hours. That’s what happens when on the last night of Stanford MedicineX, fellow Canadian, Bill Swan, has a brilliant idea and we stayed awake all night mind mapping while waiting for our 3:55 AM shuttle to the airport, along with Steve—the reason I was at MedicineX in the first place, to be his guide—and Guide Dog Murray (who did not stay up all night because that dog does not even stay up all day.)

I got out of bed, to finish watching my friend Ryan’s documentary about Chronic Fatigue Syndrome (ME/CFS), Forgotten Plague, with my MedX mug beside me, in use for the first time.

http://i2.wp.com/farm9.staticflickr.com/8355/29782610126_1d31a78a86.jpg?resize=500%2C375&ssl=1

Ryan and I met in 2014 at MedX, and I had the privilege of watching an unfinished cut of the film back then—it’s amazing, and even more so to see the transformation within the documentary. Go watch it.

http://i1.wp.com/farm9.staticflickr.com/8417/29526648800_83f83f2628.jpg?resize=500%2C375&ssl=1

Ryan and I on Sunday night by the pool.

I then tried to put my jeans on inside out and was almost successful, and then emptied my pockets of the dollar bills that accumulated there (like pennies, this Canadian can’t stand dollar bills).

 

“We probably look like hobos.” –Bill. #medx #brainstorming #allnighter

A photo posted by kerri (@kerriontheprairies) onSep 19, 2016 at 1:32am PDT

I’ve failed in the past at adequately summarizing MedicineX on my blog: it is too big for the words that I have, as I said in this video. So instead, this time, I will attempt with a bullet point list, in no particular order. I don’t have a good track record over the last 4 years and 2 MedicineX conferences I’ve attended of expanding on the stories much, but maybe this way I can have some hope.

  • Canadians.
    Back in 2014, Rachel and I started up the #MedXEh hashtag for our fellow Canadians to share in the story with us, from the Canadian perspective. This year, I met so many more Canadians in the past, and not just patients. I am looking forward to grabbing coffee with Dr. Greg Schmidt from here in Winnipeg (represent!), and connecting again with Bill and Amos from MemoText next time I am in Toronto, after learning about the technology they are working on for asthma management. Canadian Mental Health advocate Mark Freeman and I will, I am sure, have some good chats in the future. I am happy to have found so many people from this country, this healthcare system, engaging in this discussion.

    http://i0.wp.com/farm9.staticflickr.com/8155/29736868321_e67c586326.jpg?resize=500%2C375&ssl=1Thanks to Uber Driver Sean for pulling over to snap this shot of Dia, Bill and I!
     
    http://i0.wp.com/farm9.staticflickr.com/8233/29193203673_3d68ec2651.jpg?resize=375%2C500&ssl=1 

  • Connections. 
    It’s so cool when someone you only know on Twitter walks up to you and exclaims your name, and you greet one another with a hug. It’s even better when you can exchange stories with patients you’ve just met and know nothing about—your quick, 30-second elevator pitch of yourself, if you will. MedicineX is amazing for bringing patients into the conversation, but also for letting us have those conversations amongst ourselves with the ample networking time. Sometimes, you walk into a room for a presentation, and the speaker greets you by name because they’ve been seeing your tweets flying by on the hashtag, or IDEO p. Patients are not just patients, and students are not just students, to most of the attendees—whether healthcare administrators, doctors—we are there to share our expertise, too. If you are willing to share your story, and be bold, your story is valued.

    http://i0.wp.com/farm9.staticflickr.com/8598/29193262803_15a5de60e6.jpg?resize=500%2C375&ssl=1Healthcare Engineer Yang Fang and I, on a non-MedX meetup this weekend. He’s been working on a predictive asthma tracking app/site for several years now, keeping patients—like me—at the centre of his work!
    http://i2.wp.com/farm9.staticflickr.com/8546/29819898005_e047b8459a.jpg?resize=500%2C375&ssl=1http://i0.wp.com/farm9.staticflickr.com/8228/29192176734_4262e0fed6.jpg?resize=375%2C500&ssl=1Thanks to Random Guy Who Borrowed Bill’s Phone Cord at the Sheraton Lounge for his photography work! 
     

  • Conversation.
    If you don’t know someone at MedX and find yourself sitting beside them, it’s not uncommon to hear “Hey, what’s your story?” I found that this year more than in 2014, I spoke with a lot more different people than in the past—like caregivers, doctors, designers—and not just patients.
    Story is important at MedicineX. And then story, becomes solution: how might we is one theme that is commonly used when someone illustrates a problem they have encountered, and then the community dreams big with the realization this is not right, let’s fix it. (See also: stories, below.)
  • http://i0.wp.com/farm9.staticflickr.com/8016/29736914531_f1c4e463b7.jpg?resize=500%2C375&ssl=1Design.
    As Nick Dawson (one of my favourite ever presenters, and people, who told several of us “Come to DC and work in the design lab!”), lead the closing exercise, he said “How might we make research more delightful?” This is a common thread: how might we take something that’s okay, or good, and make it into something ridiculously great? No holds are barred, and this is a theme that IDEO has made an Integral part of MedicineX. How might we.
    http://i1.wp.com/farm9.staticflickr.com/8465/29193310403_bdd2e8ab80.jpg?resize=375%2C500&ssl=1Nick, for some reason behind the couches.

    Steve participated in the IDEO Design Challenge (video to come), as did Dia, where Bill participated in the Entrepreneurship track—all based on how better solutions can, and should, be created to solve problems caused by poor or unimaginative design. 

    http://i0.wp.com/farm9.staticflickr.com/8071/29736913531_8637a8b808.jpg?resize=375%2C500&ssl=1
    Technology is a huge player in MedicineX, but as both seen in the IDEO design challenge and throughout the conference, sometimes it’s not about tech at all, it’s about innovation, and it’s about “co-creation” with everybody involved (as much of a buzzword as that may have been). People need to play with design.

    http://i0.wp.com/farm9.staticflickr.com/8207/29706489392_ee3a8c4eb4.jpg?resize=375%2C500&ssl=1 

  • Stories.
    Every story someone at MedicineX brings to the table is important—even if you are not a presenter, you will at some point be asked “What’s your story?” (unless you are like, chilling in the wellness room being quiet the whole time). While I used to feel like it was mostly patients being asked their stories, I often heard patients turning to a doctor or a designer, or another attendee to ask “So, what’s your story?”

    Everybody has a reason for doing what they do—from Yoko of Sen Sound sharing and gathering stories about the last sounds attendees wished to hear, to the folks at IDEO, to every app developer or hospital administrator or insurance provider who realized “This isn’t right, let’s do better,” and went with their heart and gut feeling, even if it wasn’t the status quo. Everybody has a story—and the MedX community embraces them.

This is what MedX 2016 came down to for me: Canadians, connections, conversation, design and stories. It’s left me exhausted (that might be the all-nighter) and energized to do more, create more, be better, be more bold and transparent, and explore more areas I haven’t even begun to consider. 

There are more stories left to be told—if I’m not too wrapped up immersing myself in making things happen :).

My asthma is a third of my age this year. At least for 3 weeks, anyways. Eight years ago today, I was handed a prescription for Ventolin by a walk in clinic doctor, at my second appointment with him where I adamantly refused his answer that I had “bronchitis” again.

http://i2.wp.com/farm2.staticflickr.com/1580/26429474300_9ed1a87011.jpg?resize=500%2C375&ssl=1I mean, had I been the same as I am now, I would have told him “That’s bullshit, this isn’t bronchitis,” but I wasn’t that patient yet. Although those were my first steps to becoming her—refusing the “authority” of a doctor who was about to misdiagnose me yet again.

The reality is, advocates aren’t born of perfect situations—if care were perfect, we wouldn’t have anything to advocate for. But in order to be effective advocates, we have to believe that our experiences matter, and that our stories can bring change. Advocacy is about creating something positive of the negative: it’s not reminding everybody about the shit we’ve been through constantly, it’s not about wanting to only share the injustices we’ve experienced, advocacy is not about the negative.
Advocacy is not just about me.

Advocacy is about wanting real change for ourselves and other patients. It is about the choices we can make to make our own situations better. Advocacy is about using our stories for good—finding the positive in the negative (and all that other flowery bullshit sounding stuff that is, you know, actually true)—if you don’t push through the shit, you don’t grow.

I’ve learned a lot in eight years. I’ve been places I’d never thought I’d go, and met people I never would have otherwise. Many of those things have nothing to do with asthma, but, would they have happened otherwise? I’ll never know. Eight years later, I know a few more answers, but I’ve got a thousand more questions. So, I’ll keep packing up all the inhalers I take—none of which are really new, and if they are, they’re not novel—and hitting the road. I’ve got hope that something better will come, but I’m not going to wait around 5, 6, 7 decades for it—I’ve got things to do now.

Sorry, science. I don’t believe you’ll cure asthma in my lifetime. And yep, I know pharma doesn’t have any interest in curing me anyways.
Prove me wrong, I dare ya.