For me, besides the intermittent agony, the worst part of my post concussive syndrome is my balance loss. Its usually the less active elderly that suffer vestibular disability, so coping skills are easier to master as they don’t have work or active lives to get through….at least most don’t.
When you are in your 30’s & get hit with this kind of disability, its a whole other ballgame…its also very rare, so there isn’t a lot of support or information out there for people like us. You can read a billion articles about the inner ear & the science of balance loss….but info on living with said balance loss-not much out there.
I’m tougher than most and this thing almost got the best of me. I became a hermit recluse. My balance wasn’t getting any better, after WSIB cut off my treatments it got worse. The WSIB neurologist forbade me from using a cane…I now know its because at my job if I need walking aids I can’t work which means they have to pay me, so they convince me a cane would be bad. No treatments, no canes. So, I end up bedridden after falling at home & messing up my knee. Then when I recover, I have several close calls outside of home & then I just stopped leaving the house completely except to work (I get a ride every day) I stopped going anywhere.
When I finally snapped out of it and said ‘fuck that WSIB fluffer’ & realized his advice was self serving and not in my best interest, I got the cane & it has given me my life back!! I am now walking my beloved city again, used to be my favourite thing to do.
Walking outside is like bootcamp & makes physiotherapy feel like a spa day. At physio they educate you (a MUST-its VERY empowering) and they work you, but the floors are even, you have a spotter & repetition really does work with vestibular, so after you ‘master’ their floor, its kinda coasting after that.
Walking outside is hell in comparison-the floors are SO uneven everywhere you go, people are assholes, moving things like cars & bikes throw you off your center…none of this stuff happens in physio. When you add the cloudy confusion of a concussion, its like walking through a carnival mirror-fun house. As shitty as it feels, it is good therapy. I can often feel my inner ear get numb & fuzzy on or after a walk-something that used to happen in physio-so I know its working.
I figure I’ll share what I’m learning so that the next poor wobbly bastard can spare himself/herself the sad & humiliating learning curve journey I had to suffer.
No two steps are the same: People will ask you, ‘how was your walk?’ The honest answer is ‘felt like shit but did me good’ It used to be that you would either have a good walk or a bad walk. Not anymore. Now they will always be both. You will have easy steps, and shitty steps, you will have peaceful moments & stressful ones. A lot of the stressful moments only suck because of your miserable perspective. So cheer the fuck up and know that this step might suck ass, but next step might be better.
People are assholes: But mostly I’d have to say, its not that they are so much assholes as oblivious. It used to really get me down….very dangerous because ‘down’ lingers. Its almost a bit healthier just to get a bit pissed off, then just shrug it off. I try to tell myself that people don’t mean to be inconsiderate, they just don’t know better. For all I know, I was/am just as oblivious and am oblivious about it. Today on my walk I literally got run off the sidewalk by a bunch of rushing pedestrians. I stumbled onto the grass (grass is HELL with balance loss because its lumpy) I could have got pissed…almost got pissed. Instead I took a breath, stood very still, admired the grass & waited for the rush to pass.
People Will Not Give You Enough Room: I take up half of the sidewalk. I need my cane on my right side. I can’t walk too close to the edge because I need the quad to land on an even surface or I could tumble as I’m still really wobbly even with the cane. People don’t understand this and try to push me over to the edge by refusing to go single file for one fucking second. When they pass too close to me, especially coming up from behind, I lose my center of gravity. Same happens when a bus drives past me. The pressure change sends me all wonky. Best thing to do in those situations is to stop dead in your tracks & let the fuckers pass you. If you have a cane, they’ll just assume your foot hurts or something, not that it matters.
Path of least resistance: that used to mean the quickest way there. I have learned that ‘shortcuts’ are obstacle courses in most cases. You would think cutting 10 minutes off your walk would help your energy, but if the obstacle you have to cross is THAT problematic to you, it could drain you for the rest of your outing. We are only given one so many ‘big wobbles’ before we burn out, so the less you can stress yourself, the better. However, those obstacles can be tackled as a special boot-camp outing. Having said that, there’s being positive & ambitious and then there’s just being stupid. Some shit, you just can’t or shouldn’t do anymore. Get the fuck over it.
Yesterday on my walk I encountered a crowded bus stop. There was NO WAY I could weave through that crowd. I saw a few buses coming in the distance. So I sat my ass down on a concrete slab & rested until the majority of them left. Inconvenient, yes. Stressful, no.
Staircases: My balance loss is on my right side. I put all my body weight on the railing on my right side + I lean back a little & go down one step at a time very slowly. There are 2 staircases in my neighbourhood that slope down. Today I tried one and holy shit, it was bad. I might never try that again bad. I made it down 4 steps then realized I was about to die and had to SLOWLY back up & I had to sit my ass down ASAP to recover. I couldn’t even wait o find a place to sit. Attempting that staircase was an epic moment of arrogant stubbornness. RESPECT your limits.
Crosswalks: What a pain in the ass! The post concussive stuff makes crosswalks & intersections very overwhelming for me in the first place. So much going on. Too much. I can’t cross fast enough for the lights it seems, so that pressure sucks. Today some asshole drove right in front of me cutting me off & i had to walk around his car. Cars moving in front of me (making a left as I’m crossing for example) really make me wobble. I will often walk the extra block to a crosswalk to avoid an intersection if I can.
Most curbs slope downwards towards the street….hell. Be extra careful here. I find bending my knees slightly helps.
The white lines on a crosswalk: Like being on hallucinogens. W-O-W. Don’t stare at them directly. Keep it peripheral…although even that is trippy in its own way.
Safe Spot: I find there is a spot that is a comfortable spot to focus my gaze to regain/keep my center of gravity. I assume its different for everyone. For me, its about 3/4 down about 2 feet in front of me.
Wandering Eyes: Used to be, the best part of walking in the city was people watching & window shopping. So much too see in the big city! Problem is, when you move your head or shift your gaze, that’s when you lose your center of gravity. Do it too often & you trigger the vertigo symptoms. I mostly look straight ahead, and when I approach an area I’m going to want to check out, I slow down or stop. If I approach a row of store windows, I slow down, secure my center of gravity, feel rooted with the cane & THEN I turn my head. I keep my head in that position until I’ve seen all of the windows, then I secure myself, root with the cane & then return my head to center.
Conscious head turns/gaze shifts seem to go much smoother than not thinking about it. I mostly wobble the worst when I’m not paying attention. Good news is, if I’m having moments of not paying attention, that means I’m becoming more confident.
BootCamp It: On even ground, speed up or move your head slowly, shift your gaze. Just get through a rough slope? Turn around and do it again. My new thing: I had an unconscious tendency to lift my left arm up (like a tightrope walker would.) So now I keep my left hand in my pocket to train myself not to.
Why bother? Because its good for you. You’ll feel it too. After spending the better part of a year lying down it feels friggin FANTABULOUS to feel oxygenated. Do it! Do it! Do it! The fresh air, the sun, the birds, the trees, the sky…do it!!! Its worth every shred of effort. I now walk an hour a day-its hard as fuck & I come home in literal agony….I still feel like shit, my ears ring like mad, my symptoms are still wretched…but I still feel….happier & tougher since I started walking.