I have an unfortunate confession to make about something that I feel really, really stupid for. Personally though, I think it’s funny and proves just how complex living with an injured brain truly is. When I started to explain what happened to my husband, Kasper, I realized how absent my mind is when it comes to discoveries of my post stroke living so I thought I’d share this idiotic tale of mine.
When you survive a brain injury, whether it’s traumatic or acquired, the recovery process is so long that you are always making discoveries about who you are post event. You think after a year or two you must pretty much be who you are from now on, right? Well, that’s not always the case; certainly it isn’t my case. I always say life after stroke is like going through puberty all over again. Your emotions are everywhere, you don’t know who you are, and you don’t know who you will become as a result.
With puberty we are told as kids that it comes in phases but as you get older you realize that each stage of puberty blended into the next and you come to understand that last phase you went through never really ended, you’re just more conscious of your aging and it made you wiser. Some are stubborn and get stuck (midlife crisis) and some learn from their histories and try to pass on their knowledge while embracing the next stage of circumstances that will provide them with more advice to pass along.
Stroke recovery comes in similar stages. You think it’s over like everyone told you it would be within a certain time frame but later on you realize that last stage never really ended. Recovery never stops and if you stop reaching for progress, whatever progress you made may dissipate. You could even find yourself worse off (like a bald dude in a too-small convertible or a woman in too-tight leopard print spandex and a perm).
Recently, over the last six months or so, I’ve noticed I regressed a bit in my recovery. I started napping again. I’m very tired by 2 p.m and I have to lie down and nap a minimum of 20 minutes. It’s worse on days I use the computer for more than paying bills. It’s like a fog that starts from behind my ears and wraps around until it’s covered my entire head and is pulling on my eyes. It’s sometimes impossible to pull myself out of this and move on without a nap of some kind.
I like to get dinner started by 4 because I’m slow in the kitchen. I try to have dinner ready between 6:30 and 7 but sometimes it takes longer and I’m lucky to have the boys at the table by 8:30. Kasper helps but he knows I like to try to do as much as I can on my own. I feel cooking is a great way to mentally challenge yourself after brain injury. There’s so much involved from multitasking to following instructions and using your time appropriately. These are three areas of brain function typically affected by brain injury. After dinner, Kasper and I work together cleaning and getting kids ready for bed. Sometimes he takes more of the work load and sometimes I end up doing the dishes, vacuuming, and wiping down everything because a kid is being difficult with him. After all the lights are off but the one in the living room Kasper usually pops in the shower and I take yet another nap until he comes out.
Within two years post stroke I had stopped napping altogether. Next month will be 5 years and I’m back to napping 2 (sometimes 3) times a day. There are days where I make skimpy meals because I have absolutely zero energy by 4 p.m. One week recently I didn’t cook all week. Kasper made a dinner or two and then we ordered food we totally couldn’t afford. It got me to thinking about my routine. Naturally, I started considering quitting smoking pot. That has to be it, right? I didn’t smoke this heavily those first couple years so that had to be the change, right? Even though it freaked me out to take this consideration seriously, I tried altering my schedule to where I didn’t smoke until after my computer time. I was equally as tired, if not more. I tried not smoking one day and was so irritated by the time my kids came home from school I decided to put that experiment at the bottom of the list and moved on.
Here’s where my long explanation of absent mindedness comes to play. I started drinking coffee when I was 20 on a road trip across Texas with my then-bf Marshall who bought me a truckstop coffee. Before this I didn’t even drink dark soda. I’m naturally hyper, caffeine is not a necessity for me. I’d get coffee from the Circle K down the street every now and then after that. Half brewed coffee and half vendors cappuccino. Perfect mix just the way Marshall taught me. I didn’t start drinking coffee every day until I met Kasper at 22; he’s heavily addicted to it. Up until I got pregnant at 23 I drank multiple pots of coffee a day. I always heard caffeine while pregnant gives your baby red spots on their face so I limited myself to the recommended 2, 8 oz servings per day and no other caffeine. Skas was born with angel kisses and a stork bite (they’re faded now).
Because of the birthmarks, when I got pregnant with JJ I barely had any coffee; then I had a stroke at 13 weeks. Because of the pregnancy the doctors weren’t too keen on giving me the pain meds they would normally give stroke survivors. With a throbbing AVM and a blood puddle still in my brain, my headaches were beyond pain. I’ve had 3 teeth pulled to bring relief, I know what teeth pain is. I had swimmers ear last an entire summer, I know my fair share of ear pain. I’ve had a kid, I know labor pain. This was like when you go too deep with the Q-tip and your whole ear canal has this weird reverberating thud that you can’t avoid; that was my entire head. It was unavoidable. So they put me on this caffeine type diet with limited morphine. I had to drink coffee or cola (my choice) with every meal and when I asked for morphine too soon I was sent more caffeine.
It took me an entire year to stop drinking cola. That stuff is terrible. But I couldn’t stop drinking it. I was chugging whole cans at a time. Kasper became diagnosed as prehypertensive and we started drinking water together immediately. And lots of coffee. And then, at the start of this school year he stopped coming home for coffee between dropping the boys off at school and going to work. So I stopped making coffee in the mornings because it was easier. We continued to drink coffee in the evenings though. We’re those weird people that need coffee to relax at night.
And then, Kasper got shit scheduling at work and spent a lot of weekdays home. But because he was bringing home [Marshall’s style of convenient store] coffee in the mornings for us I started to drink coffee early again. Then his schedule went back to normal and I started to have weird headaches that clogged my entire head. I decided to make a half pot of coffee for myself one morning, something I never do anymore. I haven’t napped in over a week.
I feel really dumb. How could my problems have been related to coffee? My brain has felt focused and energized consistently for the first time in months. My daily headaches dwindled almost instantly into nothing and I can spend more than an hour staring at the computer screen, typing away, without needing a nap. I got more work done with my offline writing this last week than I have in like three months combined. What’s even better is that I am able to smoke and not get that ugly drowsy feeling but still feel totally chill in my seat at the desk.
Like I said, it’s like puberty and I have no idea if what I’m experiencing is permanent or just part of this shift of phases in recovery. It turns out I’ve just needed coffee back in my mornings and I’m so forgetful that forgot this key piece of change. It bothers me it took so long to figure this out and that it happened by chance and coincidence. Kasper just happened to get a few extra weekdays off from work around a time I was starting to dig around for answers about the current state of my recovery. I’ve definitely regressed physically and I have no idea if my reasoning is lame but I’m waiting for my toe to heal before I return to strengthening exercises. It’s seriously gross but it’s not infected.
I just want to add: how weird is it that all of my doctors, therapists and so forth recommend or don’t condemn coffee and pot throughout recovery but they are very proactively against tobacco and alcohol? My neurosurgeon also said no to gingko biloba.