Me Vs. Concussion

In March 2013 I got smacked in the face during a game of rec soccer. Black eye has healed, nerves in my face seem to have come back, and my nose is now just a bit crooked. But this concussion just won’t quit.

[concussiondiaries-blog]

I shall call you “against all odds peppers”

[concussiondiaries-blog]

"Garden sunshine pepper". All leaf, no height. Pepper plants officially stress me out.

[concussiondiaries-blog]

Struggling...like my pepper plants.

So, my pepper plants have been struggling to get established and grow. They looked lovely in their seedling stage, but I'm just not quite sure why they're not flourishing as much as their tomato neighbours.

It's certainly been part of my weekend guessing game.

Why am I up this "late"? Because I've been sleeping most of the evening. And yesterday evening too. Why? It's part of that guessing game I mentioned. It could be anything really: the chiro adjustments, or  nautorapath supplements or acupuncture I've been recently been trying. Could be the humidity, and too much time in the sun (which, if I may point out, never previously posed problems. Does it sound like I'm bitter? It's because I am).

Ugh. Summer is finally here, garden is all planted, and yet this weekend has been incredibly frustrating. It's possibly because life has been feeling pretty decent lately (as evidenced by the lack of posting. Who wants to write about a concussion when you're feeling good? Not I!).

So, it was feeling like the noggin was on a solid upward trajectory, and this is now feeling like a semi-serious setback. So I'm at a bit of a loss. Wait to let the various therapies do their thang? Abort them all completely? Retreat from life? (Ugh, that feels like the worst. Laying in bed waiting for a headache to go away is sucky. And yes, that is a technical term).

And since you've caught me in a complain-y mood, to top it all off, I know I'm about to get a whole whack-load of advice soon descending upon me. Because you see, I try and answer the question, "how are you feeling?", as honestly as possible. Partly because once cannot possibly keep up a facade all the time, and partly to educate people on concussions...and partly because I hear it's the best policy.

The trouble with this approach is that people's response to this is to really, really, really want to give you advice. And often in an overly-aggressive way. Examples include:

You have to stop acupuncture. Stop it now. I'm going to text you until you do.

I'm pretty convinced you're not drinking enough water. You'd get better if you just drank more water. I don't know why you don't drink more water.

You should take time off. I know you've worked really hard to build your tolerance to normal life back up, but when I feel sick, I take time off, and I'm convinced that's what you need to do now

To be fair, that's not entirely what people are saying, but having been given much advice over the last 462 days, it is what is all starts to sound like.

As for me, I'm just hopeful that both me and the pepper plant make it. So I'm going to be patient.

Cut to...

[concussiondiaries-blog]

Washington cherry tomato. Huge leaves! First flowers. First determinate.

[concussiondiaries-blog]

Its coming along….

[concussiondiaries-blog]

….ahhh-mazing. Let’s get our gardening on, bitches.

[concussiondiaries-blog]

[concussiondiaries-blog]

Update on me: a conversation with myself.

Me: Hey!

Myself: Hi!

Me: It's been a long time.

Myself: I know.

Me: Is it because you've been feeling better?

Myself: Yes, in fact. Things are getting much better. Except for the mornings. While I'm a bit more conscious now, there's still a lot of fetal position. Sleep plays a huge role. On the days I don't get enough sleep, not only do I feel crappy, but I also have a mega-headache and a fog that takes quite some time to lift. So I have to be really careful about not-pushing it. It's like I'm a 16 year old kid, who's getting the car for slightly longer periods every time. Soon I'll be able to go out on the highway without mom and dad.

Me: Although you know what they say about Chinese drivers...

Myself: That's racist.

Me: I know, but it's okay because I'm Chinese. It's hipster ironic when I say it. If a white person said it, they'd just be an asshole.

Myself: White people have it so hard these days.

Me: It's true. But I digress. How's work going?

Myself: Work is actually going really great too. Colleagues and management have been super understanding and gracious since I've been back. A lot of people seem to have their own pain stories. People have been interested in hearing how I'm doing, and supportive of the (very) gradual return to work. It's been great, never once have I felt like a freak.

....well, at least not because of the concussion. I wore these bright pink pants to work one day. Then I kind of felt like a freak.

Me: Fashion misstep!

Myself: I'm not sure. I think there might still be hope to find a good work-outfit-combo for them.

Me: But it does sound like work has been overall a positive thing.

Myself: It's always tricky in these work situations, because you feel super self-conscious, and don't' know how people will react. Especially to an "invisible illness". Chronic pain is especially tricky, because you're in it all the time. Instead of being the exception, it's the rule. So you're always pushing through. It's counter-intuitive. People are used to stopping when they feel pain, but I have to find a way to push through it. So I can understand when people make the assumption that, "well, she seems fine". Sometimes it's because I actually am fine, but sometimes it's because I'm working really damn hard to make it seem like I'm fine.

Me: Maybe then, the pink pants are a good idea.

Myself: Yeah, then people just think about the pants. (For my Brits out there, I mean trousers. I'm not galloping around work in my underwear.)

Me: Any setbacks so far?

Myself: Not really. As long as I take it slowly enough, so my body doesn't realize I'm slowly increasing work and play hours, it seems to be okay. Only really set back was getting the stomach flu recently. That was a most degrading experience. Combined with the concussion pain, it was a definite low of all the low's.

Me: Eww, the stomach flu!

Myself: I know, right? No one else seems to have gotten it, except me and the boyfriend. But I think I've narrowed down the cause to eating Doritos directly after a child had chunky-sneezed in the bowl.

Me: It was only a matter of time until you were foiled by Doritos.

Myself: ....it's true.

[concussiondiaries-blog]

Shit people with concussions say.

"Hold on, let me find my earplugs."

"Yes, I've taken this medication before."

"Can we walk a little bit slower? And not in zig zags? Oh. We're walking in a straight line? Nevermind. Can we just stand still?"

"Do you ever just feel like 12 hours isn't enough sleep?"

"You need a doctor's note? That is literally not a problem at all."

"Yes, I'm drinking more water."

"Yeah, I know I don't look like I have a concussion. You don't look like you have a PhD."

"Yes, I've considered that <insert alternative form of therapy here> can sometimes help. And I've tried it/can't afford it/am already doing it/think it sounds bonkers."

"Yes, I'm eating more kale."

"Nope, sometimes concussions just take a long time."

"What's the largest bottle of Tylenol you carry? How much can one physically take in a day?"

"Sure I can make it. Unless I'm having a concussion day. Ok, maybe 50/50 I can make it. If the music's loud, probably not. If they have an open kitchen, definitely not....<insert blank confused looks here>...So basically, I'm not coming."

[concussiondiaries-blog]

After a three hour walk. I know how he feels. #concussioncompanion

[concussiondiaries-blog]

Happy Thanksgiving.

So, I've been thinking about gratitude lately.

(Spoiler alert: This is not gonna be the kind of blog post where it turns out I'm "grateful for my concussion". I am not. Because it sucks.)

What I am thankful for is the community of people that has sprung up around me. It's almost as if it happened without me noticing, in a city that I'm pleasantly surprised to still be in.

The amount of genuine concern, outpouring of kindness, and optimistic hope, that has come my way in the last 224 days, 3 hours and 52 minutes  (but hey, who's counting?) has been mind-blowing. I am in complete shock over it, actually.

You see, all the "concussion literature" preps you for the jerkfaces. They prep you for friends and family that just don't understand. Insurance companies that try to screw you over (this has partially turned out to be the case). Co-workers that think you're faking it. Bosses that try to fire you. Doctors who know nothing. Society that forgets about you.

I cannot emphasize how much this has not been my experience. (Either that, or I've hit my head so hard that I can no longer read social cues). 

If anything, (and knock on, like, a thousand pieces of wood), I really feel like I've fallen in the "way more than I could expect or hope for, I'm so freaking lucky" category. The people around me equate to one of the most beautiful expressions of humanity...ever.

(I'm trying to write this without sound like I'm on an episode of Oprah. I'm obviously failing.)

Nevertheless, I am grateful for all the people who have made this road to recovery more bearable, and on some days, even pleasant. It's been a shitty journey, but they've provided distraction along the way.

To further over-explain this metaphor: It's like I've been traveling on a shitty dirt road, not wanting to take a step, because it feels like I'm having the worst hangover ever, only there's no reason to be hungover. And some days it's hard to keep puttering along this stupid dirt road because there's no sun, I keep tripping on potholes, and I'm really thirsty, but there's no water. Why isn't there ever any water?! On top of that, all I can see is just...road. Like in Saskatchewan.

But, the entire way down, for some strange reason, people have been walking alongside me, cheering me on, providing me with food, doing my dishes, changing their plans to be there, making sure I stretch, bringing me tea, turning down the music, letting me borrow their dog, and telling me lovely stories about the outside world. They've been reminding me how I'm just further along the road than before, despite it feeling like I've been standing completely still. 

The road has been rough, but the scenery has been beautiful.

So happy thanksgiving. I am thankful for so many things. But not the concussion. The concussion can kiss my ass.

[concussiondiaries-blog]

Are you a current and former female athlete who has had a concussion - in sports or outside of sports? Participants are needed for a National Study of Female Athletes and Concussions to explore athletes' experience with concussion. You can have played any sport at any level. Recruiting females for 20 min online survey from Clemson University Researchers and www.PinkConcussions.com

[concussiondiaries-blog]

Thanks for making my concussion about you.

Let's be clear here: the majority of loved ones, friends and colleagues have been awesomely awesome. So awesome, in fact, that I would love to make them each all individualized cupcakes, all in line with their dietary preferences. However, there have been a smatterings of people that have said things that really make me scratch my head.

Let me explain.

A couple weeks into my concussion, this  weird phenomenon started happening. When I would explain what happened, people would mostly listen, and then reply that I should just "enjoy it." With an optional scoff.

It was a little bizarre, and I'm not really sure what people wanted me to "enjoy." I get that I looked okay (post-black-eye), and if it was about the silver linings, I would even understand that. But the scoff really threw me off. 

In fact, it took me a really long time to understand that the "enjoy it" remark, was really about them, and not about me. My educated guess is that these people really wanted a vacation, and perhaps thought getting a concussion was the way to do it. (Maybe they have a bullshit job. I don't know).

I admit, prima facie, I can see how the life looks good. But then common sense kicks in. Let me help it along: 

What you want: To spend your entire day in pyjamas.

What I do: There are days where this happens. But it's because I haven't gotten out of bed. In the first week, it was because the painkillers made me super loopy. Now its because of the chronic pain, which comes and goes according to a schedule I don't quite understand, and haven't been able to reign in.

What you should do: Get a more comfy wardrobe. Seriously. Leggings are acceptable now! They basically feel like pyjamas. And tunic = oversized t-shirt. See how I solved your problem without involving you getting a concussion!

What you want: Read more, or pick up a hobby (like urban gardening). 

What I do: Reading or hobby-making only became a small possibility  two full months after getting hit in the head. Even then, the windows I could do it, were small. And a major reason is because I couldn't read novels without it triggering a headache. In fact, I couldn't read anything for longer than 20 minutes. Gardening became something a bit easier because I could read for 20 minutes about one stage of gardening, put the book down, and do it. Like plant seeds. 

What you should do: You might think: "I can't pay attention to anything longer than 20 minutes either!" Oh, really?! Do you get attacked by a fuzzy headache fog after 20 minutes? I didn't think so. Get off Facebook, you have time to pick up a hobby.

What you want: A vacation. To hang out with your kids, friends, or significant-other. 

What I did: All my friends were at work. Living their lives. I was in bed, having a headache, and second-guessing whether I could do anything. You see, because they tell you to literally do nothing and let your brain rest. Infuriating when you all of a sudden have heaps of time off. It's also embarrassing to make your boyfriend do your laundry, dishes, and sometimes feed you. Oh man, it was embarrassing even to type that. All that to say, my partner became a caregiver, which has a way of making one feel terribly useless. So, besides laying the massive headache, there was no real "hang" time. Aside from inviting friends to my messy apartment/concussion-prison, there are limited places I could (and can) go to that aren't noisy, or dish-clangy, or crowded. I'm telling you, you don't want this! (Note: As time has gone on, there have been times where I have ventured out to restaurants, if pain levels were tolerable that day. But these were more the exception, rather than the rule. And with the weather getting cooler, and patios starting to close, my "options" are now about to become much more limited). 

What you should do: Don't get a concussion and take a vacation! A real, concussion-free vacation! Make time for people, because people matter more than work. Also, stop telling me to "enjoy it".

[concussiondiaries-blog]

Frequently, frequently, and even more frequently asked questions.

In an effort to "pre-answer" many questions before my return to work, here's a snippet of the email I sent my team before I returned to work. It seems to have helped educate, or at the very least, entertain. 

Understanding there might be some general questions, and to try and curb some of the obvious excitement surrounding my return (and also keeping in mind big crowded rooms just aren't what they used to be for me), here are some quick answers to questions you may or may not have: 

What is a concussion? Your brain gets knocked on the side of your skull, and gets bruised. Because it's your brain, it can take a long time to heal, and impacts everyone differently. If you're just dying to know more, here's a helpful video: http://www.youtube.com/watch?v=zCCD52Pty4A.

Why did it take so long? Well, 80% of people with concussions get better in about a month. The other 20% take longer, with a non-linear recovery (i.e. lots of ups and downs, like the stock market), and an unclear timeframe. I'm solidly in that other 20%, and still working towards a full recovery.

But you look fine?! Thanks. I have good clothes. Also, you can't really "see" concussions or chronic pain. Also, that wasn't really a question.

So what did you DO all day? It depends on the level of pain I'm working through on any given day. Typically, in the mornings, I wake up with a pretty awful headache, so I'm in the fetal position for a bit. That's why I'll be starting back in afternoons. But I also learned some pretty badass urban gardening. So that keeps me busy. Then, some more fetal position.

Where do we go from here? The idea all along has been to find a formula -- of drugs, life pace, exercise, sleep, physiotherapy, etc. -- that produces the least severe symptoms, so I can introduce something new into the equation. In this case, it's work. So it will be a gradual return process, starting with two half days a week, so as to try not to upset the formula, and then monitoring, increasing, and seeing how symptoms are from there.

Who did you miss the most? I missed you all in exact, equal amounts.

[concussiondiaries-blog]

So like....what do you DO all day??

Question I get asked all the time. The short answer is -- it depends. It depends on the amount of pain I'm working through on that particular day. Some days more, some days less.

  As the symptoms have yo-yo'd in severity overtime, here’s the glorious rundown as of late: 

Everysinglegoddammorning: wake up with a mind-blowing, blinding headache. Curse modern medicine. Lie in the fetal position, hold head. Loving and supportive partner also curses modern medicine, and I usually get a nice back rub and some Advil. 

Eventually, I get up, try and get some food in my body.

Tend to the garden, which is a nice slow activity, helps keep my mental sanity, and moves about as slowly as I do. Need multiple water jug fill-ups. Knock the aphids off all my leaves. Curse organic gardening. Knock even more aphids off my leaves. (Spoiler alert: the aphids are winning). Might need to lie down again after this. 

Usually, I try and go for a swim. Swimming has been, by far, the best form of physical activity during the concussion. It was one of the first things I could do in the first couple months. No balance issues in the water, and feel almost close to normal. I’m usually able to time my swim just right before the YMCA Day Camp kids (and their frazzled looking counsellors) coming tramping into the pool. 

Physio exercises which I have to do 3-5 x a day, all 8 of them. Spread out throughout the day, used to treat for vertigo. 

Lots of insurance forms. Fighting with insurance companies. Calmly explaining the situation to insurance companies. Condescendingly explaining concussions and the newest protocols to insurance companies. Spelling my name correctly for insurance companies. Faxing documents to insurance companies. Wondering why they’ve lost all the documents again. Because no one uses fax machines, that’s why.* Scan documents to insurance companies. Again.

Do what I can stand on any given day. If I have my trusty Concussion Companion with me, we’ll go for a nice long walk. Those days are nice. Pet therapy works. 

Many, many appointments: Throughout this time, I’ve seen a bunch of different doctors, two different types of physiotherapists, a massage therapist/chiropractor, a pretty useless osteopath**, a dentist to check out my jaw, and optometrist to check out the floaters in my eye (which turns out I just have forever now). These you try and space out a little bit, so as not to overload yourself with all throughout the week, and for therapeutic reasons of not having too many variables at one time. 

Did I mention the constant headaches and dizziness? 

---

*Turns out they have a person that waits by the fax machine, scans the paper documents, and then emails the files to the insurance officers. This process takes several days. And it’s all in the name of being “paperless". So after several delays, I ask, “well, I can just scan and email them to you", which is met with an, “Oh yes, that would be much easier". No shit.

**I recognize that not all osteopaths are useless. This one really, really was.

...

For a small change of pace, here's a great illustration that pretty much sums it up:  

[concussiondiaries-blog]

Ok medicine, you win.

The hiatus of these oh-so-witty-pseudo-educative concussion posts are because me and the doc decided to try three weeks sans painkillers! 

I went in super excited, convinced that I had improved to the point where I no longer needed them. So I entered into a three-week period of drug-free glory. (To be fair, I should mention I was allowed to take copious amounts of Tylenol and Advil, as needed).

Which it turned out I needed. 

Le sigh.

You see, turns out the drugs were having far more of an effect than I originally thought. Designed to prevent headaches from coming on, it turns out they were doing just that. Off the meds, concussion-style-headaches were triggered far more often, and my tolerance for screens, noises, etc. took a major dip. All the massage, yoga and positive thinking didn't make too much of a difference, pain-wise. (Although it did help in terms of coping with the pain, which I appreciate). 

So I'm waving the white flag. Back on the meds, which give me much bigger windows of normal life. I give in. Modern medicine, you win. For now. 

[concussiondiaries-blog]

But...you look fine!

Gee, thanks! To be fair, I have really good clothes. 

Concussions are particularly tricky, because no one can actually tell whether something is going on, except for you. 

Early on, after the black eye healed, there was the weird temptation to slip into excessive temple-rubbing, to give people a physical demonstration of the constant pain that I was in just to help give them some indication that I'm not okay. 

Adopt a positive attitude, and don't complain too much, and you can basically pull off a fairly normal facade. Problem is that it is a facade, and it doesn't necessarily help you get better. It also confuses people, because they seem to need you to 'look sick'.

It's really weird. I never thought I'd miss the black eye.

(Aside: The amount of times I've heard, "But you look fine!"....I could make a drinking game out of it. If I could drink). 

So, you push through conversations, because it's the polite thing to do, or just wishful thinking that the brain-fuzziness-mega-pain will quickly pass. But if it doesn't, by the time you finally get to say something, or make a graceful exit, it's pretty much taken over. 

This makes it difficult to do, well, any kind of planning. Every planned event or RSVP all of a sudden comes with a "concussion disclaimer" and a hopeful, "I'll try my best", fully knowing that's there's nothing you can really do, except hope that you don't drop the egg.

You think about weird things when you enter restaurants, like whether they have an open kitchen, what kind of music they play, or how busy they might be. (Haven't been to many restaurants in 5 months). You plan where you sit at a table, so you don't have to turn your head too much in between people. You limit the number of people you hang out with, because on certain days, multiple conversations are a surefire trigger for headaches. (This can lead to awkward exits). And any weekend away has to come with at least 3 or 4 exit strategies...just in case. And 50% of the time, those early-exit plans have been implemented. 

The truth of the matter is that you have to get really good at creating limits for yourself, and get comfy with telling people you have to leave a situation, even if it comes off as impolite, or abrupt.

Ok, bye.