ADHDaversary: five years on the ADHD journey.

Five years ago today I was inconclusively “diagnosed” with ADHD: my testing couldn’t fully diagnose ADHD, though did pinpoint a host of other learning issues and quirks about my brain, but they also couldn’t fully exclude the possibility of an ADHD diagnosis. That discussion marked a closure of sorts: gave me answers, and affirmed the fact that no, I wasn’t dumb, and I was in fact trying as hard as I could—my brain just has wiring that’s a bit different.

Over the last five years I’ve navigated what that means—and I’ll probably spend the rest of my life figuring it out. I’ve embraced that I “see life differently”. 

Embracing ADHD though, doesn’t mean I’ve stopped questioning what might have been different had I been diagnosed with ADHD and learning issues earlier—unfortunately. Perhaps one day.

i’ve got scars i’m willing to show you.
you had heart that i’ll never see
she had answers to all the wrong questions.
it’s funny, these answers are all that i need.

caldecott tunnel, something corporate

From twenty-one to twenty-six, things have changed a lot in those five years since my diagnosis—many, if not most, for good. I’ve written before about wanting back certain elements of myself from certain points in my life—coincidentally, today, I feel I might be closer to that. Whether a method of procrastination or of opportunity, I danced today for the first time in ages. I paused once in that 34:40.61 span of time to make a note in my journal—another activity, like exercise, I did much more frequently in 2011-2013 than I do now, and one I am obviously better off for doing—both in general and specifically for my ADHD.

During that time when I was flailing around “dancing” (because I can’t dance, and I don’t care, ‘cause it feels good), I also again remembered it was my ADHDaversary, and reflected on that, too. How I’m still the same but, because of the knowledge packaged in a diagnosis, so different at the same time.

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When busing back and forth from assessment appointments, I listened to a lot of Something Corporate, and found specific relevance in Caldecott Tunnel. Mostly for this one line in the midst of the process—and for the one above after the fact.

we end up regretting the things we don’t try.

caldecott tunnel, something corporate

Here I am, five years later. Appreciative of and still wanting everything I know now, but also wanting elements of my twenty-one-year-old-self—who was figuring shit out much the same as I am now.

And knowing somehow, someday I’ll get there—or a different version of here. And will continue to embrace the good of ADHD… and work on doing better at embracing the moments I hate my ADHD, seeing the not-so-good for what it is and working with it. In the meantime, I’ll enjoy the journey—because let’s be honest, an easily distracted and differently thinking mind has to be a lot more interesting to live with than a neurotypical one. Not that I will know that world, and nor do I want to. 

If I had a normal brain I wouldn’t be me, after all. And being me has been a pretty wild ride so far.

I think the added impulsivity helps with that. 😉

 

I’ve got a lot of amazing allies who have been my biggest supporters through the earliest days of questions and all of the days since I got the answer of ADHD. Jay – as always, without you I am unsure I’d have persisted in accessing the assessment—thank you for all your support finding resources early on, and in the last five years. Seriously not sure where I’d be without you. Tash – for throwing e-mails back and forth in all phases of the process. and sharing your own adult ADHD/ASD journey with me so candidly; you pushed me to learn more about myself. The Smart Girls with ADHD admins—Beth, for creating SGwADHD, Nikki, Liz, Nathalie and Matti. Rob, Theresa, and everyone else I’ve connected with online. Thanks for helping me to be more awesome.

I’ve probably missed some of you. If you’re reading this, well, you likely deserve to be on this list too. Thanks for being a part of my story.

the other side of ADHD

Usually, I embrace ADHD. Last night was not one of those nights. I posted this on Instagram last night, and figured I would post it here too. Because ADHD is not just a punchline; it’s not a joke. ADHD is more than distractibility, more than “hyperactivity”, more than forgetfulness, more than what people “see”, and way more than people perceive it to be. Way more than many people can even try to understand. It is real.

—–

 

A post shared by kerri (@kerriontheprairies) onFeb 20, 2018 at 10:34pm PST

Most of the time I embrace #ADHD. Tonight, I hate it. 
I hate how it makes literally everything more effort. Everything. I hate how it sometimes makes me a person I don’t want to be. It’s not an excuse, but it’s also not my fault. I hate how it’s a series of paradoxes. I hate what it does to my emotions. I hate how I’ve been trying to calm down from something stupid for over an hour now, after two other hours stuck. I hate how it, and in turn I, manage to ruin an otherwise great day. I hate how it doesn’t make sense and how it’s so hard to explain to others. 
Yes this is real. And it sucks. And on nights like tonight it’s hard to embrace my own #neurodiversity.

I hope tomorrow I get my ground back. Tonight, I hate having ADHD. 
Thanks to the amazing people who reached out on twitter. You have no idea how much I needed to know you’re in my corner. 💜 (via The Mighty/ADDitude)

—–

Usually, I don’t get down on my ADHD. Last night was not one of those nights. 
And I’m still “feeling it” this morning pretty hard, from a three hour experience of over-emotion and over-thinking, and all those things. Compounded by the wrong kind of hyperfocus. The hardcore emotional effects of ADHD are not well enough explored, and they are still hard to navigate.

some will learn, many do
cover up or spread it out
turn around, had enough,
pick and choose or pass it on.
buying in, heading for
suffer now or suffer then
it’s bad enough
, i want the fear,
need the fear, cause he’s alone
fear has become, cause he’s alone

well if they’re making it,
then they’re pushing it,
they’re leading us along
the hassle of all the screaming fits
the panic makes remorse.

after all, what’s the point,
course levitation is possible
if you’re a fly, achieved and gone
there’s time for this and so much more
it’s typical, create a world
a special place of my design
to never cope, or never care
just use the key cause he’s alone
fear has become, ‘cause he’s alone

over and over a slave became
over and over a slave became

well if they’re making it
then they’re pushing it
and they’re leading us along
the hassle of all the screaming fits
that panic held before

well if they’re making it
then they’re pushing it
and they’re leading us along
like a cancer caused
all the screaming fits
and their panic makes remorse

leading us along (vitamin r) // chevelle 

smartcrutch review: thoughts after the first month

For over two years now, I’ve navigated an off-and-on, recurrent (or remitting?) knee injury. I’ve gone through rolls of CVS and Synergy brand kinesiotape (and a half roll of KT tape which I swear does not adhere as well and has since been relegated to other tasks). I’ve seen a sport medicine physician. I’ve iced and compressed and elevated. I haven’t gone to physiotherapy because I lack insurance, though that sort of rehabilitation is likely in the works. This has brought me to trialling the SmartCrutch…

Photo on 2018-01-09 at 11.26 PM #2

…but more on that in a moment!

The technical-non-technical background on my knee

If you don’t care about the suspected mechanics of my injury and want to get to the SmartCrutch jump ahead to the next header. 

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Here’s a screenshot of my x-rays from a couple years ago which I posted on Instagram, recently (somewhat poorly) labeled, and sent to a friend. 

It seems the issue is my patella is being pulled medially (toward the “inside” of my leg), and causing some sort of tracking-type problem. Likely, this is because my legs are different lengths—yes, many people’s are, but unlike many people’s, mine are actually clinically significant, to the tune of about 68 mm. This stems from my right hip being super screwed up, also known as severe hip dysplasia. I have an orthotic but because of muscle tension in my quads preventing my hip from fully extending, combined with the other stuff, I still limp.  

The theory here is the malalignment has messed with my quads, has pulled my patella over to a slight angle, and this results in a degree of pain and the feeling like it’s going to give out. My limb length discrepancy is visually apparent (limp), and these symptoms further exaggerate my limp to one that is not-normal-for-me. Doctor, x-rays, then the assessment became that this is all due to my biomechanics and it didn’t seem to my doc that exercises would help this, at least not then. A year and a half ago or so, there was nothing he could really do (especially given my lack of insurance coverage). My pain isn’t terribly severe, thankfully, but feeling like I’m going to possibly fall over combined with that and my general imbalance is a tad disconcerting. Walking longer distances, as well as snow and ice suck (I don’t encounter that many sandy beaches which might also suck after a couple dozen feet). The injury actually started when I was working at tennis clubs, weaving around uneven back areas of courts. So, uneven things remain a problem: cobblestones in Zurich, snow here in Winnipeg, as well as long distance walking, and abrupt stops. 

It was a mostly annoying problem until one night about six weeks ago when, after a fair bit of standing/walking, the only way I could really move about my kitchen was by holding onto the counter. Awkward. 

The question of crutches…

Well over a year ago, a friend asked if I’d considered using crutches. I had, sort of, but related to my hip dysplasia (as they both stem from a staph infection resulting in multifocal osteomyelitis as a neonate, AKA a bone infection affecting multiple joints), I also cannot fully straighten my right arm. This caused significant issues when I had knee surgery (on the other knee) 14 years ago and had to use axillary crutches. My orthopaedic surgeon said forearm crutches might help, but other mobility aids were more easily accessible—I eventually used axillary crutches for a very short period post-surgery when I was semi-weight bearing. Thus, axillary crutches still didn’t seem a great option. A year following the injury, I did check out options and discovered the Smart Crutch, but wasn’t ready to make the mental—and financial—investment into crutches. 

Well, finding myself leaning on my kitchen counter to stabalize myself changed my mind pretty quickly. Within 12 hours of my e-mail to Smart Crutch that night, Kirsten at Smart Mobility had replied, and agreed to send me a pair of crutches for review. (It turns out Kirsten is also trying to find the “right fit” in a Canadian distributor, so while being Canadian is always a win, it was definitely a win here.)

Enter disclosure: I didn’t pay for these, but regardless, promise a thorough and honest review. Because that’s what we agreed on. 🙂 (Formal disclosure at the end of the post.)

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Getting to know SmartCrutch

I contacted Kirsten on Monday night, we discussed by e-mail Tuesday/Wednesday, connected by phone on Thursday, and she shipped the crutches out same-day from Colorado. I was impressed. FedEx had them in my hands in Manitoba on Monday, well before 5 PM as promised. Again—impressed! 

The uniqueness of SmartCrutch is in their adjustability. For me, that’s key. SmartCrutch transitions between a forearm crutch to a platform crutch. As my right elbow does not fully extend (and my wrist also has limited extension, though not as significantly), being able to adjust and carry weight across my full forearm, I thought, would be of significant benefit to me.

SmartCrutches are are a bit of a custom fit, with more customizations out of the box. They have three sizes currently available (with a fourth on the way!). While the upcoming size, Kirsten lamented after I provided her my measurements and we chatted by phone, was likely more appropriate to people my size, we settled on the Petite-Midi crutch. 

Needless to say, in the pre-crutches and starting out phase I was curious: will the SmartCrutch(es) help manage my knee issue? Will it help relieving the lower back pressure I often get when walking and mostly consider normal now? (Oops.) Will there be things I never realized were totally off that are helped? Will I even notice a difference? And the pessimist: Will they just be a pain in the ass? Is the way things are now just the way things are and will be?

And… so began my SmartCrutch trial.

Unboxing SmartCrutch.

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How about a break from this for a video, yeah?
Because, unboxing videos! Yay!

Also apologies for the video quality. I should learn not to record using PhotoBooth and why I didn’t plug in my good microphone which was right beside me is a mystery.

Beginning the SmartCrutch Trial

When I wrote this part, I was 4 weeks into using the SmartCrutch. Within an hour of unboxing, I headed out the door with my SmartCrutches for a board meeting, which was almost rescheduled due to snow/bad weather (which says a lot in Winnipeg). A fresh layer of powder on the sidewalks, I trekked out to the bus stop, a ten minute walk away. 

My first SmartCrutch story is of a “problem”-not-problem. After leaving home, I heard this strange sound. Living near train tracks, I didn’t think much of it. As I continued on, it followed me. Not even halfway to the bus, I realized the odd whistling sound was the wind blowing through the adjustment holes in the crutches—similar to blowing over the top of a pop bottle, except times the four open holes. Quite musical, but not ideal. 😉

Easy fix: Once I got home, I stuck some purple glitter washi-tape over the open holes. Problem solved: no more whistling (though an amusing story!).

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The next issue I came across was more of a fit issue. As mentioned, Kirsten mentioned this when we chatted, that I am somewhat between SmartCrutch sizes. One thing I LOVED about Kirsten from the get-go was her honesty. My forearm measurement is “between” cuff sizes—a little short for the petite/midi crutch. Kirsten mentioned that this could be a problem, but likely workable, and sent the crutches out. She also suggested some great workarounds, and super prompt replies to my e-mail questions. (Again, beyond impressed with her customer service!). One such workaround was modifying the angle of the crutch to closer to 90*. Another was to “close up” the cuff so the opening was essentially non-existent—I accomplished the latter in a few different ways. More on that in a bit.

And before it gets pointed out, yes, I realize the cuff opening is for safety so that if I fall the crutch falls off, but given the crutches make me more stable, I’m willing to take this risk.

SmartCrutch: 4 Weeks Later 

I would say that I continue to grab a SmartCrutch (sometimes two) about 90% of the time I leave the house (and 97% of the time I’m walking farther than say around a small store). I love that they’re small-ish even fully set up so that I can tuck them in between my knees on the bus, keep my backpack on my lap, and only take up my designated one seat. 

In the past few weeks I’ve also “styled my crutches”, both with fun contact paper and by closing the cuff as Kirsten had suggested was helpful, I attempted this a few different ways, starting with shoelaces and a combo of duct tape and KT tape, moving on to a thick bright green ribbon (hey, it was Christmas!).

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I’m still working on other ways to keep the cuffs closed, as the above methods were decent but not terribly long lasting—I just tried Command strips for picture hanging, too, and the velcro-like closure didn’t stay securely closed to the force of the cuff opening trying to separate. So, back to the drawing board!

This was a dual solution, resulting in less forearm friction and also solved the issue I was having of the crutches almost falling off when I reached up for something with them on, AKA every time I went shopping, only saved by the fact I was wearing a puffy jacket.

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The pink chevron contact paper is a mod I am loving. I still have to get the right crutch finished up, but it’s a two person job! Pretty template + idea from Jennifer Peacock-Smith (Facebook group for template here).

I’ve not experienced any arm pain while using the SmartCrutch, although of course some muscle soreness is to be expected (and experienced!). As well, I haven’t noted any lower back tightness/discomfort as I’d often get pre-smart crutch when walking faster than a saunter for more than 10-15 minutes some days. Win!

Another thing about being a person who generally limps and has their whole life, random strangers always seem to need to ask if I’ve injured myself. Usually, the answer was no. Even post-injury, the answer was no, since I limped anyways. 25 years in to my life, I finally got annoyed with these people. Particularly one totally random man when I was just trying to walk across a parking lot with my earphones in and I had to take my earphones out to hear “What happened to your leg?”, and then I just said “Sorry, I’m busy.” and booked it out of there. 

Guess what? Since wandering the world with a crutch or two, no randoms have asked. It’s been quite refreshing.

As well, I find the SmartCrutch is easy to stow in a variety of locations beyond the bus. I’ve yet to take them on a plane (coming in March!), but thanks to their design, I’m set at archery and while pushing a shopping cart! 

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Final thoughts on SmartCrutch

Bottom line here: the SmartCrutch is comfy. Seriously, that layer of foam lining the bottom of the platform is delightful, and comfy whether you’re wearing long sleeves, a jacket, or no sleeves. The adjustability has been crucial for me, and I find the ability to adjust, adjust, and adjust again has been so helpful—you don’t have to get a measurement right the first time, because you can keep tweaking it until you get what works for you. And if you have weird biomechanics like me, that’s super helpful. 

I find I have generally less knee pain at home when I use my SmartCrutch. Actually, today I used my SmartCrutch inside the house for the first time after coaching without it, and my right quads were just feeling unstable and not stellar: it was so nice to not have to repeat that situation from a month ago using my counter to navigate my kitchen—I grabbed a SmartCrutch instead!

As the hashtag goes… #ilovemysmartcrutch!

 

Disclosure: I received a pair of SmartCrutches from Smart Mobility, Inc. in exchange for an honest review. I was not required to write favourably, and I have done my best to give my honest opinions. (Of course, bias does come with free stuff. It’s sort of in the box. ;))

positively life-altering: on ADHD medication

Until you have been in my brain you cannot tell me ADHD is not real.
Science says ADHD is real.
Why I have to on occasion argue this fact with people, is still very confusing to me. Although I guess it is the same reason people choose not to vaccinate their children and re-start outbreaks of diseases previously eradicated from the developed world—they choose to remain ignorant.

As I once said to Jess in Calgary, “Stupid people are not your problem”.

Sometimes stupid people make themselves our problems, though, which is unfortunate.

Other times, though, smart people affirm what you’re putting out there. (Thank God for smart people!)

Yesterday morning, I shared a video on Facebook about “pill shaming” people with mental health issues. You can see the video here.

And yes, ADHD very much falls into this category. After all, everyone is just popping Ritalin (or now, Adderall more accurately) as a study drug and nobody actually has ADHD, right? Wrong. Obviously.

I have a have a friend who recently started ADHD medication again, after we had a conversation about ADHD on a dark drive home from a friend’s party in the country (I have a half written post about this somewhere that I really need to get out into the world). He, like me, has found the of meds after not treating his ADHD for over a decade positively life altering.

Yet, when he posted this on Facebook, that he was starting meds, the doubters, the disbelievers came. And—thankfully—many of us fought them back with science. I’m not sure disbelievers enjoy PubMed links being thrown at them, but damn it, I went there. Because that is how we fight ignorance and misinformation.

With freaking science.

Yesterday, when I posted the link from Mental Health on The Mighty, I did so with the following text:

This.

I’ve had so many people ask me why I need ADHD medication.
Because there is an imbalance in my neurotransmitters, that’s why. No I can’t just “try harder”. I tried life on hard mode without a diagnosis for 21 years.
Maybe it doesn’t keep me alive like other meds do, but it does make my life so much better.

Six minutes later, my friend from above commented this:

I like how this publicly happened on my Facebook lol

I replied

Um, FACT.
And we SHUT DOWN those haters. 😉

Alongside this, as of the time I am writing this, 20 of my friends chose to “like” or “love” this post. Another friend commented “Yes! Well said.”

There is power in finding people who get it. People who understand.

Because we all spend enough time fighting misinformation. Fighting people who shame you for not trying hard enough, even if you’ve tried harder than just about everybody for decades to get by without medication—often without so much as a diagnosis to understand why your brain is differently wired.

It’s much better when we fight ignorance and misinformation together.

The only way we can stop stigma is to share our stories, and being fiercely proud of our stories—they make us who we are. ADHD is a piece of me that makes me who I am. I’m proud of that piece, proud of my quirky, neuroatypical brain. Of seeing life differently. I chose meds to be part of my journey, to help me harness the joys of my ADHD brain better. Vyvanse (or previously Concerta) doesn’t cure me. It doesn’t make me neurotypical. It just makes me better able to balance the joyful parts of my ADHD with the frustrating parts (and I still get endlessly frustrated with myself. But it’s so much better).

Sometimes medicine is a part of “trying harder”.

And I’m thankful that many of my friends seem to get that.

on where i have been in my unintentional blog silence.

Hello there, remember me? The person who allegedly writes this blog except has not been here since day 7 of a 31 day challenge, in which she just disappeared into thin air?

Hi, it’s me. Not dead. (Clearly there are many other internet-y ways to determine that I am not dead, so I don’t think this was a concern).

Where have I been?

Writing. Toronto for a few days in October. Writing. Goalball. Coaching. Failing Nanowrimo even though I built my best-yet support group (I hope Jordan, John, Marie and Sara did better than I!). Archery—I get to use a compound bow now and it’s effing awesome. Zurich. Yes, as in Switzerland. Watching too much Lockup on Netflix and Supersize vs. Superskinny on YouTube, and in the last few days, Josh Sundquist’s channel. Mostly Lockup in a distracting from writing fashion. Reading books with my ears. Taking in podcasts on the weirdness of America. So, I have very much been places—and covered a lot of ground both geographically and inside my brain—but that is about it. 

Oh, thanks to Amazon I am done close to half my Christmas shopping and it’s only December second. I have previously ordered a few choice items online, but between this and some random items I’ve picked up in previous months, I am half done, which is still not as good as the done I wanted to be by the end of November but whatever. I blame jet lag. 

Now, I feel like I am going to just finish this post off right here, and hopefully come at you soon with another post that is on one topic and not just a jumble from an ADHD brain, as this one is.

In 2018, I plan to try to drop by at least once a month. I don’t think that’s a stretch… But well, we’ll see. 😉