Maybe it’s just…

… a cold?

With all my looking up medication side-effects and assuming my headaches are due to switching migraine medications, this morning I just sneezed and I’m wondering if maybe these hoofbeats aren’t zebras after all. 

Hmm

So, last night I went to an Oscar night screening, and bumped into a woman I know on the way home so we rode the subway together. And I realised I was losing my voice! No other symptoms of illness or a cold or something, just losing my voice. I was coughing more than usual when I went to bed as well, and wrote it off to March thaw allergies (when the snow goes, the mouldy old leaves are revealed). 

This morning it’s really bothering me, so I thought I’d look up the side-effects of my new medication. It lists “speech or language problems” under more common, “sore throat” under less common. Hmm. Also have some nausea, which is another possible side effect, but also a thing I’ve been dealing with along with my headaches and balance issues, so maybe that’s just me.

I only have a week’s worth of these, and a follow-up appointment on Friday, so I guess will see how things go until then.

Starting over, starting now

I feel sometimes like I have started from scratch a dozen times since last fall.

Today’s new start is new meds, cholesterol diet, and trying some faux-work experiments (aka work conditioning lite). I am nearly done my Insomnia CBT course and sleeping a lot better, so maybe if the new meds work I’m ready for it? Having my blood pressure back and bloating (from previous meds) gone makes me feel so much better.

Started the morning by going to the gym (determined to make 30 days this month, not giving myself an excuse miss it), then a breakfast of all the omega-3s, and CBT-i. Next is a volunteer usher shift (my second!) which is my faux-work for the day. Early dinner (lentils, kale, butternut squash), then going downtown to watch the Oscars at the Lightbox (I will not be staying till the end—and as I type this, I’m remembering that I meant to change my ticket to be on the aisle, oops). This will be a chance to both practise subway riding and extended focus. Exposure and endurance.

This week I am planning various tests and work-adjacent things—volunteer envelope stuffing, practice driving, doing my taxes, finishing some stuff that I’ve put off for months (medical complaint against Dr Firdouse, divorce paperwork, various stuff for my kiddo), sewing a garment (I figure that’s a good exercise in project management as well as focus and follow through). Basically, I want to live like I’m working (at a made-up job) on a reduced schedule, and see if I can at least do that, and then grow from there.

I feel like it’s time for me to enter the home stretch, or at least see if I can survive it.

Breakfast of champions

A follow-up

So, I did a little treadmill run today after lunch and felt pretty great. My heartrate stayed normal! I did not want to die after a few minutes! Did a version of C25K week 5 part 2, with two 8-minute runs. Yay.

Then I came home, had an early dinner (roast trout and broccoli, easy to prepare quickly and cholesterol approved) and went to an improv class.

I had this idea a couple of days ago. I am really struggling with losing my words, especially when speaking. How do I get that back? How do I work that muscle? So I looked up improv classes, and discovered that Bad Dog Theatre has improv drop-ins every Saturday and Monday. The closest sessions were booked out, but I put myself on the waitlist and got a spot today.

Of course, as soon as I got on the bus there, I started getting a headache, and wished I had brought my new meds (there’s a daily med, and two “rescue” meds to take when you feel something starting). I don’t know if this headache was due to stress, overexertion, the fact that the last dose of the last med was wearing off, or what. But I kept my water bottle handy to keep hydrated and selectively opted out of things like spinning or bowing low. (I really appreciated that they started the session by inviting us to share accessibility needs.) And I got through it! A little nausea by the end, but it was okay. It was great to be in a room full of beginners, none of whom really knew what to expect, so I didn’t feel like “the slow one” or like I was holding anyone back. I did feel like I was getting into the swing of things like “thinking” and “speaking” by the end, and the great thing about improv is that it’s fundamentally supportive, you’re working to build a scene together, and no one is wrong. One of the exercises was even about the value of patience, waiting for your moment, waiting to have someone’s attention, and making sure that you’re connecting and they’ve understood what you’re conveying.

I feel like this could be helpful for me and wish I had thought of it sooner. Maybe there’s a two-day bootcamp I could try? That would at least work as a make-it-or-break-it type of thing? 

New meds today, and new diet

So, the propranolol is out. Low blood pressure, brain fog, nausea, all of it not good.

Now I will be taking topiramate daily as a preventive, and have ketorolac and metoclopramide to take as needed if I feel a headache coming on. So, maybe my next trying-to-take-the-subway exposure therapy adventure, I will take those beforehand just in case. Pharmacist said if none of this works I should be able to convince my benefits to pay for qulipta, since I will have tried so many things, or another one to consider is triptans, e.g. sumatriptan. Typing this all out so I remember later. I found coming back to this blog helpful to notice how things went downhill after starting propranolol.

Meanwhile, I also apparently have high cholesterol. Not crazy high, but elevated enough that I should start thinking about diet. So, according to Harvard:

What foods lower cholesterol?

Certain foods help to keep your cholesterol levels in check. These foods lower cholesterol in various ways:

• oats
• barley and other whole grains
• eggplant and okra
• nuts
• vegetable oils
• apple, grapes, strawberries
• foods fortified with sterols and stanols
• soy
• fatty fish
• fiber supplements.

Noted. I can do that. But:

Here are 4 foods you’ll want to avoid if you have high cholesterol:

1. Red meat. Beef, pork, and lamb are generally high in saturated fat. Cut of meat like hamburger, ribs, pork chops, and roasts are highest in fat. You don’t have to avoid meat entirely, just eat it only on occasion. Limit yourself to the recommended 3-ounce portion size and stick to leaner cuts like sirloin, pork loin, or filet mignon.

Better yet, replace meat with proteins that are lower in saturated fat and cholesterol, like skinless chicken or turkey breast, fish, and beans.

2. Fried foods. Foods that have taken a dip in the deep fryer, like chicken wings, mozzarella sticks, and onion rings are among the worst when it comes to cholesterol. Frying increases the energy density, or calorie count of foods.

If you love the crunch of fried food, use an air fryer and toss your food in a little bit of olive oil. Or bake foods like potato wedges and chicken at a high temperature until they're golden brown.

3. Processed meats. Hot dogs, sausage, and bacon use the fattiest cuts of red meat, and therefore tend to be high in cholesterol and saturated fat. Bacon and sausage made with turkey or chicken might seem healthier, and they are somewhat lower in cholesterol than the red meat versions, but they're not cholesterol-free.

4. Baked goods. Cookies, cakes, and pastry are often made with large quantities of butter and shortening, making them high in cholesterol. You don’t have to give up dessert entirely, just make a few substitutions. When you bake, use applesauce or bananas in place of butter. Or have low-fat frozen yogurt topped with berries for dessert.

Noooooo!!! For one thing, I need red meat for the iron. I guess I should look for iron-rich fish? Baked goods are absolutely part of my identity and a huge comfort. I will try, obviously, but it’s easier with my kiddo not around (when they’re visiting, there are always chips and ice cream around, somehow). Will try to build some good habits before they’re back for the summer. I’ve already made the switch to fat-free greek yogurt, aka wallpaper paste. Will see what else I can do.

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…

The Plan

So I seem to have a pattern of feeling a bit better, overdoing it in some way, and then feeling worse. Every two weeks. I am making progress, but it’s very much two steps forward, one step back. So I’m working on pacing myself a bit better. Hopefully.

First thing is making sure I have light cardio days instead of C25K on the treadmill every day (these would be light days for most normal people, but I am not most normal people). So, using one of the other machines—stationary bicycle or elliptical—and keeping my heartrate in the 110-116 range.

Second thing is building an exposure hierarchy to get gradually used to more.

For example, I have been able to manage a meal at a restaurant and going to the theatre with one other person who can be my point of focus and “sherpa” to get through hubbub and generally keep an eye on me (the incident where I ended up in hospital last month, I had no one person to focus on or look out for me, it was conversations in all directions). On Saturday, I had an early dinner with two friends. Later this month I was invited to a group dinner at a restaurant, which sounds kind of like a nightmare. But maybe book club would be a way to work up to that? There is hubbub, but usually people speak one at a time during the club meeting proper.

Another thing I struggle with is public transit. Streetcars are best. I can handle a bus if I have the right seat and it’s not a crazy route. Subways are the real sticking point. I have managed a Line 1 subway without problems a few times (never at rush hour though obviously) and am working on building my tolerance to Line 2, which is somehow wobblier (I guess due to older trains)? The main thing is avoiding St George station, where too much is going on due to the number of people transferring, and if on the Line 2 platform, I get overwhelmed by the thundering of Line 1 trains overhead on top of the screeching of the wheels on the tracks.

So my transit exposure hierarchy might look something like:

1. Take Line 1 for three stops starting and ending at quiet stations in off-peak hours (e.g. Dupont to Museum)
2. Take Line 1 for six stops starting at a quiet station and ending at a busy station in off-peak hours (e.g. Dupont to Osgoode)
3. Take Line 2 for three stops starting and ending at quiet stations in off-peak hours
4. Take Line 2 for six stops starting at a quiet station and ending at a busy station in off-peak hours
5. Take Line 1 for six stops starting and ending at a busy station in off-peak hours
6. Take Line 2 for six stops starting and ending at a busy station in off-peak hours
7. Transfer at Spadina station in off-peak hours
8. Transfer at Bloor/Yonge station in off-peak hours
9. Transfer at St George station in off-peak hours (Line 2 to Line 1)
10. Transfer at St George station in off-peak hours (Line 1 to Line 2)

And then repeat the whole thing but at rush hour.

That’s the exposure part of exposure therapy. The therapy part might look like having “rescue” options for managing stress during the exposure, like grounding exercises, techniques like havening, noise-cancelling headphones with soothing music, or bringing a journal to write out impressions during the ride; and honouring that this is hard work by rewarding with self-care treats (my go-to being hot chocolate and an almond croissant). 

I should look through my old therapy notes to see what else I can add here.

Anyway today’s exposure adventure is my first volunteer usher gig since the start of October (five months ago)! It’s at a theatre that is very close to home (a five-minute direct bus ride, I could walk there if I want), and has a straightforward set-up (unlike, say, Crow’s, where the layout changes with every production and there’s a lot of traffic management). Thinking I’ll make myself some hot chocolate to bring. I can feel my anxiety rising just thinking about it! But hopefully it will be an easy enough test to my system that I will pass with flying colours. 

And then, a few days’ rest, and on to the next! 

Trying something new!

So I’ve made a little plan for myself for the month of March, alternating between C25K and lighter cardio days. Trying to build gradually instead of overdoing it (again) and crashing out (again). More “jog towards the danger” than “run towards the danger” if you will.

Today, I tried using the elliptical machine for the first time.

The Elliptical

It took me a minute to get going (that is, to figure out how to get it going). But I’m excited to try something that uses my arms as well, and also is just a different “feel” to get used to.

The weirdest bit (to me) is that it doesn’t have the cross-body motion I was expecting—like when you’re walking, or a baby starts crawling—with left arm moving with right leg, and right arm with left leg. After all of the struggles I’ve had working on that, both at the start when I thought I’d use an umbrella as a walking stick on a rainy day and more recently when I started using Nordic poles, this is just the opposite!

Eventually I got used to the rhythm though, and managed to maintain a respectable (for me) pace.

The main thing is it’s another way to get my arms working. My left arm is still very much a noodle after all that time in a sling, and I obviously can’t think about lifting anything until I get my balance issues sorted out. Friday I couldn’t walk a straight line for hours after getting eye drops, yet another reminder to not get cocky! But I still think I can see the shadow of a bruise on my left arm sometimes. Today it seemed very visible when I was on the Elliptical—maybe because of the lighting, maybe I was just seeing it from different angles due to the different motion?

Is that a faint bruise, still?

Note to self: make sure to do a thorough stretch tonight, as different muscles were getting some use today.