Most people who get concussions heal within 8 to 12 weeks after the injury, so post-concussion syndrome isn’t common. For some of us, healing takes months, years, or might not completely happen.
Post-concussion syndrome (PCS) typically dissipates within a year… it’s been over three.
Don’t get me wrong — I am grateful for the progress that I’ve made.
I have come a long way from having to lie quietly in the dark; I can walk for extended periods of time, read, go on my phone, hang out with friends for more than 20 minutes, and so much more… But (always a but) I still deal with challenges that I never expected.
I’m going to share with you a “day in the life”.
The main reason I’m sharing is so that others with similar challenges know that they’re not alone. Even if the illness is different, the struggle when it’s not visible is the same.
I also know it can be hard to understand something that you haven’t experienced. I hope that this can help give those around me an idea of what a day is like for me.
• • •
6:30am — I wake up with my eyes hurting and head pounding.
Last night my husband and I sorted boxes for over an hour while preparing for a family garage sale. I haven’t organized things in a while, and I thought that I would be fine — I am not fine.
I take painkillers and rest while my husband readies the tiny human; we pack everyone into the car and are at my sister’s an hour early to set up.
10:30am — Headache comes back with a vengeance because I’m peopling.
When there are more than a handful of people it can be challenging to focus; I get overwhelmed by the different little conversations, and quick topic changes. I’m also monitoring where my tiny human is at the same time. By 11am, my headache forces me to go inside and lie down. I’m not going to take painkillers yet because I budget them on bad days, and I am waiting as long as I can.
11:45am — I give in, take painkillers, and ask Shane (husband) to drive me home.
My aunt is giving me a look, and it’s the, “Why is Shane driving you, drive yourself,” look.
I’m embarrassed and am mentally pep-talking myself out of feeling shame. She didn’t actually say anything, so I can’t tell her that I’ve learned that if I try to drive home with one of these headaches it will trigger a migraine.
Shane ends up driving me around a lot more than I’d like. When I got the concussion part of how I coped was by telling myself it was temporary — when it became clear that was not the case it was incredibly hard. I love my people but I don’t like having to rely on them.
12:15pm— Sweet, sweet bed, I adore you.
I emerge from the bedroom a couple hours later, apologizing for disrupting the day and over-analyzing Shane’s body language to try to see if he resents me.
(note: He does not. Shane gets more frustrated when I don’t take breaks.)
3pm — I want to make up for lost time.
I scurry about seeing if anyone needs help — I feel terrible that I left partway through, and want to make up for it. I’m constantly battling the fear of negative judgement; I don’t want anyone to think that I don’t care or that I’m lazy.
4:30pm— Time to ration my energy a.k.a sit out.
I’m sitting out. My mom unexpectedly invited us out for dinner which is awesome (I love food) but because it’s unplanned I don’t have the energy budgeted for it. I didn’t want to disappoint her so I said yes, and now I’m doing what I can to ration what energy I have left.
6pm — Dinner with the fam. Love them!
I enjoy myself as much as I can as I begin to play a weird game of pain chicken.
How long to wait before taking more painkillers? How long can I stay here and talk before the pain in my eyes travels in a halo around my head? How long can I socialize before the tank is so empty that I’m not going to be able to function on Sunday?
8:30pm — Home and crash
Shane does nighttime routine with the tiny human. I’m low energy at night and he is generally the one who does nighttime routine. Tonight there’s no question of who is going to put her to bed, as I go straight to our room and pass out.
I don’t want to seem weak or lazy, especially in front of people whose opinions matter to me.
I experience a lot of anxiety on a day to day basis, but on days like today it’s worse. When I’m around people and have to take rests and breaks I become self conscious and push myself too hard.
I also have this huge fear that people think I’m making this shit up.
Years ago when I began experiencing depression trying to talk about it and get help was a complete disaster. I wasn’t able to get the support I needed from my school, my doctor, or my family.
Having another invisible illness has wrecked havoc within me.
I have to overcome the fear of not being believed over and over.
I have had to become okay with the limitations that I have.
I have had to restructure what success and productivity mean so that I can feel that I’m a person who has value.
There has been a lot of changes over the last few years, and this has been the biggest one of all. What makes your life one of value is a esoteric question to begin with, and then to have many of your joys and skills taken away in one head injury… it can be a real challenge to feel valuable, especially in a culture that values productivity, busyness, and work the way ours does.
I want you to know that if you’re facing a big challenge — life, physical, whatever — you are capable of managing it. If you need support don’t be afraid to reach out.
Note: If the first person you talk to disregards your concerns, please keep looking and find someone else.