So wrecked.

Feeling some kind of a way but maybe it’s just because I’ve been feeling off all week. 

Part of it is stomach upset from the junk food lunch we had on the weekend. 

Part of it is the looming six-month anniversary of my tumble, coincidentally also my birthday. 

I thought I would be better by now. 

Last fall, six months was the longest I thought it could take. At the beginning of this year, 31 March was one of the dates on my LTD letter and I sort of mentally noted it as “will be better by then.” 

Now those dates are coming soon and filling me with anxiety. 

Part of me is frantically thinking, “What else can I try?” I still haven’t called the osteopath my friend recommended (I’m honestly unsure what osteopaths even do). I had the idea the other day of seeing a speech-language pathologist since it seems to be speech where my cognitive difficulties really overwhelm me. I had the idea this morning to try Improv classes to “work those muscles.” Why didn’t I think of that months ago? (Answer: I wasn’t capable of thinking months ago.)

I am typing all this from the waiting room of my doctor’s office, to follow up on some bloodwork results, anx probably get another lab req.

And wondering: 

Do I tread extra carefully now so I don’t mess up my progress as I approach the finish line?

Or do I go hard, to guarantee that I will be either 100% better or 100% obviously not when 31 March rolls around?

So this is why I feel like crap

Update from the exam room, my blood pressure is low even for me! No wonder I was feeling pooped climbing stairs on my way here from the gym. 

A day of contrasts

Of all kinds, literal and figurative. 

I started yesterday feeling awful. Post-concussion nausea? Straight-up stomach cramps? Seemed to be the latter; I blame the “boneless wings” I had for lunch on Sunday (restaurant chosen by a relative). All day I had cramping and stabbing pains off and on, that had me looking up “spleen pain” to see if I was actually dying. 

I did force myself to go to the gym regardless; being a light cardio day I told myself I could leave early if I wanted. And this is dumb, but I knew I was due for an “award” for a 12-week attendance streak. I am like a kid with a sticker chart! Silly, but it does motivate me.

I am on fire!

Then I went home to clutch my belly for a while longer. Waah.

I had a couple of late afternoon appointments that I had been looking forward to, but worried my upset stomach would keep me from. Nevertheless, I soldiered on.

First was an orientation at the neighbourhood secret sauna.

The neighbourhood oasis 

You’d never guess from the outside, but a nondescript building in my neighbourhood is actually a gorgeous little sauna. 

I’ve long enjoyed contrast therapy, and for the past five or so years have been a semi regular at the Banya in Mississauga. I go with a friend and we spend the entire day there. I had been longing to go, but worried I wouldn’t be able to handle it. Anecdotally, I’ve heard both good and bad things about contrast therapy for people with post-concussion syndrome. I asked my doctor at the Toronto Concussion Clinic and they said, “It depends.”

Temperature regulation is a function of the autonomic system—all the stuff your brain tells your body to do without you really being aware of it. Balance is also under the autonomic system. So if you’re really pushing your autonomic system with one task—temperature regulation—it may not have the juice left for another—balance.

I reeeeally wanted to go to Banya, but I didn’t want to say to my friend, “Hey, drive me across the city to this place that costs $60 but maybe I won’t feel well and I’ll need you to drive me home after twenty minutes.” Then, I found out about a new sauna in the neighbourhood that’s more poshy-posh but I could walk there (and get home easily if need be), and we started talking about when we could go there. Then, I found out about the secret sauna, and booked the orientation.

It felt great! 

I was anxious about feeling off-balance—imagine falling into the coals?!—and whether I would be able to manage the cold plunge. I did have an experience at Banya a couple of years ago where I got the shakes and needed my friend to bring me tea and warm towels to use as a blanket while I lay on a sofa to recover. But I was okay! Got in and out without a struggle, although I barely stayed in for a moment.

I felt exhilarated after! And ready to go to my next lil appointment a brisk fifteen-minute walk away.

Part of me of course is thinking, “Wow, this is it! I have found the cure! A few more sauna trips and I’ll be fully recovered!” But another part of me remembers that I felt that way for about two days after reading Sarah Polley’s book, and apparently having a few good days and feeling inspired is not a guarantee of anything.

So far today, I feel okay (the day-after-feeling seems to be my litmus test for a lot of things). I was going to do a “practice workday” experience today (two hours of stuffing envelopes at a theatre in my neighbourhood) but just got notice that was cancelled. Maybe I’ll try the next step in TTC exposure therapy instead? 

Just noticing…

… that I’m making a lot more entries here this week, but they’re mostly about anxiety and balance issues. Since I started propranolol. Maybe it’s not so good for me? Woke up today with an “upset stomach” and wondering what I ate to trigger that, and then remembering that nausea is one of my concussion symptoms. I think this one might actually be my stomach though? 

Exposure

I was just looking at my exposure therapy plans and fleshing out the details looking at the TTC website. For example, my next step says, “Take Line 1 for six stops starting and ending at a busy station,” but how to do that? How to get to a busy station, how to get home from a busy station? Which routes are currently changed (e.g. Spadina streetcars were replaced by buses for a while, is that still happening?)

Looking at the service updates page, I noticed an item on the long-awaited Eglinton Crosstown line, and looked at the map. There’s a stop at Kennedy, near the Rama Gaming House where I had my fall. RGH is definitely a place I’ve thought of as a peak-stimulus spot on the exposure hierarchy. Lights and noise and a general sense of guilt… how would I work up to going someplace like that?

And just thinking about it, I tear up.

A little panic, a little fear. Could I go there? Just to walk in the door, look around, and then skedaddle off for a saving treat? I would need someone to go with me, who would go with me? 

Just thinking about it makes me cry.

Will I ever go to Bike Rave again? Will I ever even ride a bicycle?

How is this even happening?

Sometimes it just seems insane that I was transformed in the blink of an eye from someone who was out six nights a week, biking across the city to the theatre and Midnight Madness events that end at 2am while at the same time working at a day job. Seriously, in September I’d leave home at 8, bike to work (often arriving early, first person in the office), go on a group social ride after, and then see a show at 9:30—that was a Monday.

Funny, I remember thinking during pandemic lockdown—how is this happening? And then after things were back to normal—did that really happen? Was it all just a dream? 

I hope I get back to normal again. I hope there comes a time when I look back on these dark months as a wacky anomaly—“Remember the winter that I didn’t leave the house? That was so weird!”

I really need to believe that can happen.  

Ow my brain

Just making a note to self that I have a headache coming on. Left side. Didn't get great sleep last night; kiddo came home from uni and with the train schedule it’s a quarter to eleven when they get here, and they were still yapping when I said, “I love you but I gotta go to bed,” an hour later. We went to Freshco this afternoon (note to self: I need to try exposure to a different grocery store to see how I do), and I had that “power drop” feeling I get in the summer when it’s too hot/humid. Just finished a mug of green tea so I shouldn’t be dehydrated. So tempted to doze, or try to.

Oh, and tomorrow is daylight savings, aka goodbye morning sun. Waah.

Oh and I almost forgot, I’ve been really stumbly today, too. Just staggering around and bumping into things. 

Is it me, or…

So I started a new migraine medication this week, propranolol.

Previously, I had been taking amitriptyline for migraine prevention, with mixed results (maybe it would have been worse without? But I did have that nasty incident that drove me to ER). A friend suggested I ask my doctor about Qulipta. My insurance wouldn’t approve Qulipta until I “failed” two other medications. So amitriptyline was one, and propranolol will be two—or maybe it will just work and I can stay on it?

Here’s the thing with propranolol—the side effects include lowering heartrate and blood pressure. For most people, that’s a win. As someone with low blood pressure normally, it makes me a lil nervous. I already have issues with feeling lightheaded if I stand up too quickly, and now we’re doubling down on that? Hmmm…

My first treadmill run the day after starting it went really well. It was the first day of week 5 of Couch to 5k, which feels like a bit of a jump from week 4 (week 5 feels like a bit of a jump every day). I was pleased at how manageable it seemed, and noted also that my peak heartrate wasn’t as high as it had gotten two days prior when I was finishing up week 4. Meds, maybe? 

Today, though, I just felt off. My skin felt prickly? Or almost pins-and-needles but not quite? I repeated day 1 (5 minute jog, 3 minute walk, 5 minute jog, 3 minute walk, 5 minute jog) instead of progressing to day 2 (8 minute jog, 5 minute walk, 8 minute jog) because 5 minutes of jogging felt like I was really pushing it. Afterwards, my skin was super blotchy—really flushed in some areas (face, chest), really pale in others (neck). 

Blotchy!

So, I thought maybe I should look up the side effects (up till now, I’ve only known what the doc and pharmacist told me). Here we go…

From Migraine Again:

Propranolol is a beta-blocker medication developed in the 1960s to treat chest pain and high blood pressure… By blocking adrenaline, propranolol slows your heart rate, lowers your blood pressure, and reduces the dilation of peripheral blood vessels (is that where the blotchiness came from?)… Propranolol may also reduce stimulation of the trigeminal nerves in the head, which contributes to the migraine process… Common potential side effects of propranolol include:

• Dizziness or lightheadedness
• Drowsiness
• Fatigue
• Nausea (hmm, my tummy has been off lately)
• Exercise intolerance (ah, maybe that’s it)

Some readers reported intolerable side effects:

“I tried it, but it made me feel spaced out, I couldn’t concentrate, and my brain was always fuzzy—I’d rather have a migraine!”—GW (I am definitely spaced out, but I was already kinda spaced out, so…) 

“It did nothing to prevent migraine and gave me horrendous, vivid nightmares. I would not recommend it.”—MLA (not nightmares, but I have had difficulty sleeping and some vivid dreams!)

I was worried about having a “hangover” effect after last night’s struggles, but not doing too badly today (although I did almost start crying for no apparent reason on the way home from the gym). So maybe it’s helping with the anxiety too, which it is also supposed to do?

Guess just have to wait and see; often side effects go away as the body gets used to things.  

Oof

So I am just getting back from a very small social event that I went to half as a test to see how I would do. (I realised last week that while I have mastered the art of being with one person, I haven’t gotten much farther than that.) This was a Road Support social (I am volunteering for the Friends for Life Bike Rally this year instead of riding—good thing as trying to ride would have been impossible) upstairs at a pub (some of the F4LBR socials I’ve been to are at a nightclub, and even in the afternoon it’s too much with colourful lighting and crowds), and only a half dozen people came out, and the room we were in was otherwise basically empty (no voices coming from behind me). 

I did okay and when the evening entertainment was about to begin, I decided to leave on a high note and said my good byes.

At the very first corner, just steps from the pub door, I got disoriented and confused as to where I was.

I figured it out, and started walking up Church Street to Wellesley, to catch the Wellesley bus to Ossington Station.

This is where I got really confused.

I crossed to the north side of Wellesley, thinking the subway station is on the north side. Then I crossed Church to head to the station. Then I remembered that I do not want the subway, I want the bus. Then I thought, I could go to the station anyway, and catch the bus there. But what if I miss the bus because I am between stops when it goes by? 

The things about this kind of situation is that it doesn’t feel like the usual dumb indecision or being generally frazzled. it feels like a Sophie’s Choice-level of impossible dilemma (and yes I had to look that up because I have so much doubt and confusion that I don’t trust my memory about anything) that sends my anxiety spiking.

Anyway I went back to the closest stop, at Church and Wellesley, and the bus came right away. 

I got on and settled in for the ride across town. I think I can remember the Wellesley Station stop. Then the next thing I remember, they announced Jarvis. 

Now I was paying attention, if confused. Sherbourne. My westbound bus was going east! 

Again a dilemma. Do I get off, in the rain in a not great part of town with no shelter, to catch a westbound bus on the other side of the street? Would the driver let me stay on if I rode to the end of the line? I ended up doing that, just riding all the way to the other end of the line, thinking it was maybe some different route (I did that a couple of weeks ago, thinking I was on a Davenport bus and then finding out it was a Line 1 shuttle). But then I heard the announcement that it was going to Ossington Station. I asked the driver just to be sure, and went back to my seat.

Did I fall asleep, ride all the way to Ossington, forget to get off, and then all the way to Castle Frank? I don’t even know. I felt anxious the whole rest of the way home that I was going the wrong way again. Even though I know all the street names from biking on Harbord a million times, and I’d ridden that bus before, I never rode that bus before my accident, and so it all felt unfamiliar and so disorienting. I almost cried on the bus but managed to hold it together until I got home.

It’s really troubling, this inability to clearly think through what is happening and what to do about it. It’s funny, because I know some people who seem to struggle like this all the time, without even having a brain injury. I can’t imagine having to live like this with no respite. It’s really, really troubling.

My brain is also whirling trying to decode what about this made it so difficult (hence why I’m trying to type it all out here). Was it the event (which was extremely quiet and chill)? Was it the car lights at night (that contrast is something I struggle with)? Was it something else? Do I need to try again? Take a break? I have a headache now (of course), will it stick around for tomorrow? 

Just yesterday I was walking down the street and some emergency vehicles went by and I thought, “Wow, a couple of months ago, an ambulance going down the street would have sent me staggering.” Is this just the bi-weekly regression arriving on schedule? I don’t know…