How to Succeed in Brain Injury *While* Really Trying

 Today I think I want to cover coping strategies.

I have a bunch of those, both active and inactive. Full disclosure, most of my coping strategies pre-stroke involved a significant amount of caffeine. No, that’s not what caused my high blood pressure. It goes just as high now when I don’t take my med on time, and I can’t have caffeine at all anymore. 

Yeah, you read that right. I navigate my whole, brain-damaged world without any caffeine, and to be honest, most other people with brain injuries I know do the same. The good news is, it wasn’t hard to adjust. I kind of slept through it.

Well, I sort of slept through it. I was pretty heavily sedated anyway. When I came to, boom! No more caffeine, no more need for it, either.

Do I miss it? Yeah. Yeah I do. I never feel like I’m too far from needing a nap, to be honest. It’s weird, especially considering the fact that I can’t really nap unless I really, really, desperately need it.

I had about twenty different coping strategies for my migraines, too. I tried to head them off by being on a couple of medications over the 8 years. They weren’t very effective. The first one caused me to feel a very literal decrease in my intelligence. I couldn’t even eat properly, as I couldn’t figure out what to get, make, or even pick out for myself, so I lost about 35 lbs. It didn’t really keep the migraines away, either. I still had one or two per week. 

The second really didn’t help my migraine issues. I’m still on it, though, because it really helps my back pain.

 

I also had the emergency meds, which were all triptan based. They sometimes helped the migraines go away, but didn’t work very quickly or disperse all of them. I took them, but each different one would work for a while, then wouldn’t. This is a common thing in my family. Helpful things eventually don’t work, sometimes. No rhyme or reason to it.

I also took rather a lot of Excedrin. That wasn’t good for me. It had more caffeine in it of course, so that added to the caffeination issue.

Well, now I don’t need to do anything major for the few migraines I get (3-4 in the last 4 years. Now, I just take tylenol and lay down with an ice pack until I either fall asleep or it goes away. It occurs to me, often, that the migraines I got before the stroke were maybe not normal migraines.

My other coping strategies, for my post-stroke life, are totally different. As I mentioned, no caffeine, and I now only have to take tylenol for a migraine (I can tell it’s a migraine when the pain just sits itself behind my left eyebrow and scowls at me, menacingly. I don’t get above a 5 on the pain scale now, though, which is such a relief). I use a cane when I walk, particularly outside, as I’m pretty unsteady on my feet with either a high ceiling or no ceiling above me. I have to look directly at something when I’m walking. I can’t really turn my head from side to side too much, as I get dizzy from that pretty easy. This is annoying because I have glasses now, so my peripheral isn’t very good. But, looking directly at a certain object when I walk toward it keeps the world relatively level (not completely, because I guess what fun would that be), and the tunnel vision approach cuts down on distraction. 

Other coping stuff, building my endurance, still. I have to, because I get fatigued too easily. I think I might have mentioned that every day at 6:30pm, my bandwidth for doing things is just done. That’s another reason for building endurance, I want to be able to go see a movie and maybe even remember it, someday.

Other coping strategies are whole family things. We usually make a list of what I’m making on my cooking days, which are Tuesday, Wednesday, Saturday and Sunday. My husband takes the other three. We usually have pizza or subs once per week, because sometimes one of us is just tired. Me, usually from existing, my husband because he has to pick up a lot of slack. I do what I can, but I don’t do it all. I mean, that function just doesn’t work anymore.

Strangely, one of my since-the-stroke things, kind of a coping strategy really, is cooking more complicated things. I have no idea why that works. You’d think it would be counterintuitive, that maybe I’d rather get a meal subscription, or something. Don’t get me wrong, I totally want to get one, probably Green Chef, they look really good. But affordability wise, that won’t work. So, fancier cooking it is. I don’t get too crazy. Well, ok. I do sometimes, such as when I made a roast goat shoulder last year for Easter. The more involved cooking settles me, somehow. Likely because of the routine of it. It’s nice to just know what you have to do next, and for how long. Then when you’re done, you have dinner! Or dessert! Or any other meal! Win/win.

I’ve mentioned my cadre of alarms at least once. I’m currently angry at them because they keep telling me to do things. That doesn’t mean I remember to do the thing without a notification. I’m just as oblivious to the thing I get reminded to do as before. Now I’m just getting mad at the thing that’s reminding me; the same thing I programmed to tell me to remember to do the thing. 

It’s a good thing phones don’t have feelings, to be honest. Mine would despise me. Please, no one invent phones with AI that can actually think for themselves. I’d be doomed. It’s already bad enough that my Spotify suggests things for me that it thinks I might like, and it’s usually totally right. 

What else do I have? Hmmm. Well, I also have three or four places I usually leave things I use all the time. I still forget where those things are, of course, but either I, my husband or my son can usually find it pretty easy.

The one thing that isn’t really coped with, however, is the ADHD. I’ve got combined type now, and before the stroke it was just inattentive type. Having combined type is really challenging. I can’t sit still very well. I don’t stay with one activity until the end very often. I’ve taken up about 5 hobbies in the past 4 years, and I don’t currently do any of them except the cooking complicated things. Without the caffeine, I don’t have the stimulant to balance out my hyperactive thought process. It’s pretty tiring. I don’t know how many people without ADHD understand that. Even just coping with all of this is exhausting. And how do I know the hyperactive component came after the stroke? Well, that’s because from what little I remember and what I’ve heard from others, I was never still. I’m not usually still now. Not my usual pre-stroke MO.

The changes are…well, changes. I don’t hate them, not really. I mean, I’m not pleased with the fact that I can’t really focus on anything, but also, I don’t have the focus to…focus…on that. I’m not too terribly pleased with my inner censor being even less active than it was before, either. That’s tough. I try not to say all of my thoughts out loud, but that’s really hard. I have to recall the 3 questions I told my eldest to ask himself before speaking in class. 

Is it relevant?

Is it nice?

Is it the right time?

If any of the answers are no, you don’t say the thing. Seems simple, but reminding myself of these simple little rules saves me so many issues. All that aside, I’m still known for speaking my mind, regardless. So, maybe I only hold back when I’m really sure it shouldn’t be said. 

All things considered, though, I think I do pretty well. No one’s ever told me differently, though I mean, who would? My therapists can call me out when I’m being difficult or ridiculous. My family can too, though that’s always been the case. So, I even have a coping strategy of people keeping me in line. Not too bad, honestly.

Deep Diving into my Thoughts

Aaaahhhh I'm late. 

I was doing so well, too. 

Ah well, on with it. What on earth do I want to talk about today? 

I had a bit of an interesting thought today. It didn't start out interesting. Just bear with me.

A family member, who has some chronic pain and autoimmune issues, said "I'm just so tired of being in pain every day."

I wasn't upset, I didn't say anything out loud. I just thought to myself, "Ugh, SAME. I'm so tired of being brain damaged every day." Honestly, I think this is the case for pretty much anyone. We all have something we're really just DONE with.

Sometimes, you can be literally done with it, and it goes away, or you go away, and it's all over. This is not true in the case of chronic pain or other permanent conditions, such as brain damage, or other organ damage. Sometimes, you just have to keep living with it. 

It's no fun.

I mean, sure, there's always an out, I suppose. Some people take that out, and I'm not going to judge their pain. However, that's not always an out for everyone. A lot of people just stubbornly insist on living. We plod on, dragging whatever we have to, through life. We look for the next thing to keep us going. I haven't had a day yet where I thought "That's it. I'm just done with it. Nothing keeps me going anymore." I very much hope I never do.

Does it sometimes feel hopeless? Yeah. Yeah, it does. Sometimes, like everyone, this life feels a bit too hard to carry. It's a thing. If there's a single person on this planet who has never EVER felt this way, I'm extremely surprised. 

The difference between me and a whole bunch of people who are no longer with us, I think, is that I have something to keep going for, every time. Some days, it's my kids, some days its my husband, some days it's my whole family. Sometimes it's a goal I have. Some days I remember that I have something I really want to do, still. Sometimes it's literally "I'll never find out how this book/movie/situation ends." Thus far, though, it's always something. I can't fault that. 

But I am very, very tired of brain damage. I can't think properly. I can't remember things in the right order, or in the correct way. I can't do the job I love anymore. I'm not performing (this hurts more than pretty much anything else). I'm not a dependable member of my household anymore. 

Sometimes, I'm very irritated that I can still see all of this. I thought, originally, that if I wound up with some kind of memory loss (I didn't think of what I would feel like with brain damage, because who does that?) I would be ok. I maybe wouldn't remember that I couldn't remember something. 

But I do notice. Eventually.

I never notice in the moment. I remember when someone brings up the issue I forgot about. Or I remember when I find I haven't done the thing I needed to do. 

And it feels ridiculously bad. In the full sense of the phrase, to be honest. I feel ridiculous and I feel bad and I feel inordinately sad. I want to apologize to anyone, everyone, sometimes the entirety of existence, because I can't seem to do these simple things that I used to do. 

What good would it do to apologize to all that, though? I don't know. I just feel so inadequate and so...lost. In all of this. In my life, in life in general, in the world. 

I know I used to think relatively clearly. Not all of my life, no. There were some particularly sticky times in my life where I didn't quite function on all cylinders. But I always recovered from those times, usually all the better for it. 

Sure, I'm recovering from this, but it's never going to be a complete recovery. That damage to my brain cells will not reverse, it will not ever be the same as it was again. 

This is a hard thing to assimilate.

My brain, our brains, are everything we are. Everything we were. All that we could be in the future. Our memories are stored in this mass of matter and electrical impulses within our skulls, and we really don't think about them at all, until they don't do what they're expected to do. 

Odd, as our brains are used to think. So really, we don't think about what thinks for us. Or, the thinking somehow isn't actually self aware. 

This is a much deeper blog post than I was thinking of writing. (Ha, see what I did there?)

[Insert facepalm here]

We can't even really talk about our brains without kind of disembodying them, weirdly. We literally depersonalize ourselves when discussing our brain function. 

Does this shock anyone else, or is it just me?

This is what this brain injury has also done with my life. I am often forced to think about what I can't technically think of objectively. 

Does this all sound really confusing? 

Good, because it is.

The tangents just kind of spin out of control, and eventually...well, I think eventually I fall asleep and forget I've had this particular issue to begin with. Nice to know my self preservation is still in tact, I suppose. 

So. I just scared myself by going off script with this whole post. I feel I should give this information, as it's all part of the process. Stream of consciousness writing can do that. It takes on a life of its own, and sometimes takes turns we don't expect. If you've followed this post this far, thank you for reading. Even if you skipped a bunch of it to the end, thank you for reading. I know how confusing it is to visit my brain. I live here full time.