I’m feeling better today – much better. Thank heavens for that. This bug I’m fighting off is likely just a sinus infection, but the aches and pains and sore throat had me down. I woke up in the night feeling really sick, choking on my coughs, the back of my throat burning. I wanted to get up and gargle with warm salt water, but I couldn’t rally. So, I rolled over and went back to sleep. My body’s been in a lot of pain, over the past weeks, what with all the driving and the disruption of my schedule over Thanksgiving – AND the break in my daily exercise during November, when I was so busy, each morning.
I’m paying for all of that. I thought I was doing fine and I didn’t need to keep up with my “maintenance”… but I was wrong. So very wrong.
I’ve been having a bit of trouble, lately, with my memory and reading. I’ve been mis-reading emails at work, which isn’t good. I put people through all kinds of extra work, because I don’t understand what I’m reading, or I miss some details. I need to just get in the habit of reading an email three or four times before I respond to it. Maybe I should read them out loud to myself.
I also got a text from a former co-worker last week, and I completely forgot who they were. They were at a conference I was supposed to attend, but couldn’t because of my dentist appointment (it went well, by the way – but my spouse wasn’t feeling up to eating out, so we just came home and I cooked us some fresh steaks, which was just as good as eating out — maybe better). Anyway, I got this text from someone saying “Are you here? We are –” and then they listed the names of the other people I used to work with. But because they didn’t put commas between the names, I thought it was all one name, and it didn’t look familiar to me. And didn’t I look like an idiot, texting back “Um, I think you have the wrong number. I have no idea who you are.”
So much for that.
I dunno, I kind of feel like I’ve been going backwards over the past weeks and months. My memory isn’t as great as I’d like it to be, and I keep missing small details in conversations. I also have lost ground on the stuff I’m managing at work, and I’ve gotten lost in the weeds of all the details. Big picture thinking is not my strong suit, these days.
Of course, it doesn’t help when you’re being threatened with layoffs, and you don’t know where you’re going to be in a few months’ time. I totally dodged a bullet on the most recent round of layoffs, but supposedly there will be more. And it’s tough to not let it bother me. I’m the sole breadwinner for my household. I have a mortgage and bills to pay, food to buy, and my spouse’s business to keep stable. My spouse does a good job at what they do, the market just isn’t always there for their products & services, and there have been issues with customers not paying, so that’s a problem.
I like not being homeless. Been there, done that, not going back ever again. When I was a little kid, I once struck up a conversation with a little old lady who was buying dog food (I used to be a really outgoing kid, before the TBIs started happening). I asked her what kind of dog she had, and she said she didn’t have one… and then she ran away from me. I asked my mom why, and she said the lady was probably going to eat that dog food, herself, because she didn’t have money, and dog food has a lot of good protein. I’ll never forget the look of shame and distress on that little old lady’s face. And I swear to God, I will do whatever it takes to prevent myself and my spouse from ever having to experience that.
It made an impression, to be sure.
So, that’s my focus in life – just keeping us housed and fed and healthy. Of course, there’s only so much you can do for someone who won’t help themself. And that’s where my spouse is — just neglecting themself and letting their health go to hell. Watching the love of your life fade away because they would rather die than provide themself with a sense of being loved and cared for, is not easy. But that’s exactly what’s happening. If someone isn’t waiting on them, they don’t feel loved. So, in order to feel that, they play helpless and victim, and they wait for others to wait on them… which is about the worst thing you can do for yourself and your health.
I blame their friends. They are all of that ilk. And it’s killing them all. Not good.
So, that’s adding stress to my life. Just a bit.
It’s hard to know what things I should stress about, and which ones I should just take in stride. I don’t want to keep having these memory and cognition issues, but I also don’t want to make too much of it. I need to be objective and understand exactly where I come down, compared to where I want to come down, and then take steps. The thing is, I don’t get a lot of help from others, figuring this out. It would be nice to have an objective outside opinion, but my neuropsych is very much into the idea that we make the lives we want to have, and mild TBI is not the sort of thing that should hold me back. Especially the kind of TBI(s) that I have had over the years.
They seem to believe that because my test scores are pretty good, overall, and I have just a few areas of difficulty, I should be fine. And the thing that makes it worse for me, is my interpretation of my experience as something that’s negative, rather than positive.
I get that it’s important to be positive about things. Absolutely. The thing is, when I am having issues, I need to be able to be clear about them. I need help getting clear about them. And their influence doesn’t help me, because I get very stressed and very turned around when I try to explain to them, and I can tell they’re not taking me seriously.
It’s been infuriating at times, and many’s the time when I nearly didn’t go back at all. I have a hell of a time verbalizing my issues out loud. And when I come up against the “disbelief field” of their attitude, everything gets all jumbled up. So, I’ve often wondered how much sense it made for me to even go see them. But they’re literally the only person I know who has a grip on brain injury, as well as what’s possible in life, so I’ve used that experience as a way to be more clear in myself about what was really going on with me.
And of course, I have this blog. And my notes. So, I can write my way through all this and make sense of it in writing, even if I can’t do it out loud.
It’s hard to know what’s serious, and what’s not. And the thing that makes it all even more stressful, is having pressure on me to be a top performer, when I am lagging cognitively. So, I just do what I see others doing – I just keep going. I pretend that everything is fine, and I’m getting it together, and I don’t worry about how I look to others, or if it’s compromising my position.
Just keep going. Focus on the basics. Stick with fundamentals and keep everything very, very simple. Ultimately, things will work out, if I just don’t give up — and I keep learning my lessons properly.
Onward.
We found that our speech pathologist had the most understanding and insight to what was happening, not the neuropsychologist. Our neuropsych would tell us as parents that our kid needs to not be so dependent on sunglasses as it is getting in the way of her recovery, but we’ve noted that our daughter fatigues faster and is less interactive socially when she doesn’t have her glasses and is wincing from the pain of bright light (even with her brimmed hat on). In some ways, I read what your neuropsych has said, and it is quite similar to our experience about just getting on with life and stop looking at the world through a TBI filter. Well, guess what, the injury did have an impact and continues to have one, so maybe the professional is the one who needs to get on with it and just accept this in the same way we’ve tried to. Some days are just bad days, for everyone, brain injury or not, but the TBI can magnify the response to things that are out of sort and yes, things get jumbled, and yes she’ll get through it, but yes, it would be nice to have someone empathize now and again so that it doesn’t feel so lonely, cumbersome or overwhelming. We like to check in with our “speechie” as we feel it not only helps us to have that check in, but gives her an understanding of what is possible in brain injury recovery – so she can continue to pass hope along to others or give it to us when needed. Our speech pathologist literally changed my daughter’s life and we are forever grateful she was/is a part of our health care team.
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That’s great news – and I’m really glad you found them. I think that neuropsychs who just talk to people don’t really get a complete picture of TBI, especially if they’re going by how they think their patients should be doing, relative to their test scores.
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