This has been a rough week.
On Tuesday night, our younger son tested positive for COVID. This means we were all confined to our home for the entire week. I did get two days of therapy beforehand, and had to miss the last day (which was a bummer, the outing group I’m in that day went to lunch at one of my favorite places), I also missed my Friday at the adult daycare I go to.
This, of course, throws me off. I’m not a huge fan of having my schedule messed up. I mean, I adapt, but I really, really don’t like it. That’s not how I’ve always been, either. I used to be pretty good at just going without a schedule. I didn’t like being late for anything (that didn’t change, I still don’t), but I really didn’t care about being off schedule.
Now though? Ugh. It throws me off for days.
This is made somewhat more complicated by the fact that I have horrendous recall for when either I or someone else sets up events for me.
Yep. I can’t keep those straight to save my life.
Having the brain injury that I have (I have no name for it yet, I might not ever, but if I do, I’ll let you all know what it is) means kind of constantly feeling like I’m being gaslit.
Not movie-style gaslit. That’s a bit too fancy and obvious.
I just hear what people say, misinterpret it, and then end up with the wrong understanding. So, later, when someone tells me what’s actually going on, I’m all distraught, because I thought I was remembering correctly.
And yet I wasn’t.
It’s…unsettling, to put it mildly.
It’s not a lot of fun to be completely sure you have something flawlessly thought out, and find out you really, really don’t.
But that’s my life now, as well as the lives of people who love me. It’s tough for everyone, even though it’s easier than any number of things we could have to deal with. Realizing I’m “lucky” doesn’t make me feel much better about much, but it is something to remember.
Haha…remember. I just cracked myself up. Insert grinning smiley here.
Whatever the case, I guess this goes to show that even though we make life difficult for our families or helpers, we’re really making things quite difficult on ourselves, too. This doesn’t let up, really. It’s a huge source of stress and irritation. Many times our therapists will help us figure out coping strategies for things like this, which is good. You’d think that as adults, we’d be able to figure this out ourselves, and you’d be wrong.
That thought process, at least in my case, isn’t complete. It used to be, but now, it’s not at all.
I honestly don’t know how or why that happens, but there it is: we can't all problem-solve like we used to.
I had to relearn a great many things after my hemorrhage, not the least of which was cooking substitutions. Whatever part of my brain that stored those equivalencies was damaged, and I couldn’t really remember how to make it work. I had a friend who would cook with me for a few months so that I could remember what to do if I didn’t have any oil, say, for baking. Or if I didn’t have the right kind of flour. Before the event, I would have just known, from years of having to sub things in cooking. After, though…not so much. I slowly got it back, and now I can remember most of my subs, though some I still have to look up.
We hear a lot about people needing to relearn how to walk, or talk, or swallow properly. I believe all of that is definitely critical, and I fully applaud those who have had to relearn any of it.
I did have to do that, by the way. I had to relearn how to walk properly, pee properly, eat properly, and other things. I am still working on executive functioning.
This is made more difficult by the fact that my brain is no longer really able to manage my ADHD.
Executive functioning includes things like impulse control, emotional control, flexible thinking, working memory, self-monitoring, planning and prioritizing, task initiation, and organization.
Even just typing that out, I have thoughts.
First off, impulse control. Hoo boy. Yeah, that wasn’t very good at the beginning of all this. Example, my mom would buy me gummies, or other candy, and she would leave it in the drawer of the nightstand in my room when I was inpatient. I had no impulse control, and no working memory (which is later in that list). My husband had to tell my mom to stop buying the treats, as I would have a few, put them in the drawer and forget that I had them, open the drawer and find the candy, and do this until it was gone, usually about 10 minutes later. Problematic. After I got home, I decided to look for free things on the internet, and put my email and phone number on so many things that I was getting near-constant messages and emails. About 6 months after that, I canceled a ton of mailing lists I’d gotten myself put onto through that whole debacle, and also got myself on the no-call list. Things eased up. Impulse control is a biggie, trust me.
Then we have emotional control. I don’t know if I had much of a problem with that, but I did constantly swear for a bit. I still swear more now than I did before the stroke.
Flexible thinking? Well, I think we kind of covered that before I started this list. It wasn’t good to begin with, and while it’s better now than it was, well, it’s still not as flexible as it could be, for sure.
Working memory…yeah no. It wasn’t functioning at all. In the moment, I was good, but even 5 minutes after something happened, it was like it never even had happened.
Self monitoring was literally a no go at first. I’m pretty sure I was more monitored by the nurses and staff.
Planning and prioritizing is a tough one to define. I can plan, I can prioritize, but I’m not super good at either one. Part of that is just me, I was never really good at prioritizing, Planning, though…I was a planner. I planned everything. My dad has a phrase to describe his childhood vacations, he always says that his dad had a “Clipboard of Fun.” Literally me before the stroke. I would have the place picked out, the places we were going to eat lined up, the activities we would do all set…now? Not so much. I don’t know if I want that back, exactly. Though having a plan would be good, for most trips we go on. I do plan activities that I do at home, however I don’t always follow through.
Task initiation and organization have never been easy for me. I’ve had ADHD all my life, and though I had definitely built up coping strategies over the years, those are now gone. So, task initiation is really tough. I do better with my ADHD meds, because I can actually get my brain to think in the proper direction to get the task started. But if I don’t take it…well. No go. Organization? Pfft. Another yeah no there. I’ve been bad at that my whole life. Brain damage hasn’t made it any easier.
So, many things I work on have to do with those concepts. It’s actually helped me even just reading and writing that all out, which I will have to share with my therapists. I think they’ll be pleased.
This entire idea is helping me with executive functioning, actually. I have a goal, and this blog is a step toward it.
I’m not sure whether I’ve stated yet that my eventual goal with this blog is to be a public speaker for brain injury, but that is the driving force. I want people to understand what this is like–i.e. to be going along in life with a rather well functioning brain and then end up with a rather not functioning brain. There are a lot of things that go with that, several of which I’ve already written about, but there is so much more, too. Plus, I have friends with brain injuries, and not all of them have an outlet, or in some cases even a voice, to let their thoughts be known.
That is one thing that my brain injury hasn’t changed. I want to be a voice for those who maybe can’t let people know things on their own.
I want to help people understand what’s going on.
I want to educate the world.
Hopefully, this will be the beginning of that enterprise.
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