My sleeping has normalized, at last. After 3 days of vacation, I finally got to bed by 10:30, and I slept till 7:00. That’s progress.
I’ve been getting good exercise, getting out in the mornings to walk the beach or roam around town, and I’ve been able to nap… and relax.
It’s really important for me to keep on a schedule. If I’m not, I can get tired. When I get tired, I get cranky. I’ve had to catch myself a number of times, yesterday, to keep from getting “snappy” with my spouse. I hate when I get short-tempered… especially when my spouse needs my help. I seem to get more short-tempered more quickly when they really need my help. That’s the worst time of all. I want to be patient and helpful, but my patience runs out when they are most in need.
That’s something I’m working on. It’s come up drastically in the past, and it weighs on me with the guilt. It was worse when I was first dealing with my TBI stuff and wasn’t getting any help, yet. My spouse had fallen and hurt their back, and I was so angry and confused and turned around, that I just walked up to them, yelled at them, and walked away in a rage. I couldn’t figure out how to handle the situation, and I left them lying by the road in pain.
I’m not proud of that. But I know now it was the TBI that made me do that. I would never do that myself by choice. And I think of that situation often, when they are truly in need of help with something, and I am feeling short with them. I don’t want to be like that ever again. The injury they sustained that day has worsened over time, and now they are nearly disabled by it at times.
I sometimes blame myself for that — especially because I didn’t help them in the following days and weeks and months… as their injury worsened and their back ache spread down their legs to their knees and the whole way to their ankles, but I couldn’t figure out what to do about it — and neither could they.
At least I got some help, when I did. If I had never gotten help, things would be even worse now, I’m sure. But it’s hard to face my own role in making this situation what it is. Fortunately, my spouse is getting physical therapy, but it’s been years since they could walk and move without pain.
Of course, they’re responsible, too, for much that happens in their life. They make unhealthy choices and resist common sense, so it’s not all on me. Still and all, I do feel a responsibility for this situation. And it’s incumbent upon me to manage myself properly, so I don’t pose a risk to them anymore.
I’ve had enough of that for one lifetime.
This vacation is about us being here together. Being a couple again. Being partners again. This is the first vacation we’ve had all to ourselves in a long time — for the past several years, they’ve always wanted friends to join us. But this year, no one can come, so it’s just us. And that’s fine with me. It’s easier for me to take – and it’s more of a vacation for me.
Drink water, eat regularly, get exercise, rest… and reset.
My approach to sleep and work and taking time out during my business trip has really paid off. I got almost 8 hours of sleep last night, and I’m not feeling nearly as jet-lagged as I expected to. I’ve been back for 2 days, now, and although I am still a bit foggy, it’s not nearly as bad as it could have been.
It’s not much worse than I usually feel on a Saturday.
So, that’s completely awesome.
What worked for me was this:
Be completely uncooperative and resistant about anybody pushing me on my bedtime. Don’t take sh*t from anyone who tried to give me a hard time about not staying out till all hours.
Do my best to blend in with my surroundings, so as to minimize flack about not being a “team player”. Go along with the things I could go along with — dinner with the team, group activities, up to a certain point, and of course doing my job reaching out to customers and having good conversations with them while on the expo floor.
Take time away from people whenever I got a chance. Just retreat to my room, keep the lights low, don’t turn on the t.v. by reflex (I only turned it on twice – once to see what channels were available, once to check out), and decompress.
I did a lot of all of the above. And it was a really challenging time. But I came out of it in one piece, which is fantastic. And I’m not a miserable git, to live with, as I have been in the past.
Now I’m back to exercising in the mornings — I couldn’t get myself to the pool or gym on my trip, because I was pretty maxed out, cognitively and sensory-wise, so the idea of venturing into a swimming pool area or a gym with other people in it, was just too much for me. So, I didn’t bother.
It feels good to be back on the exercise bike, as well as lifting my dumbbells again. It’s also good to be back in a quiet house, where I can move at my own pace, and I don’t have people constantly texting me about meeting them here, there, or some other place. I get to stand at my desk and think, type, think some more, type some more. Check Facebook. Think about things. Just get my act together and regroup.
And go out for a hike later. It’s a little cold and rainy today, but that means there won’t be that many people on the trails, which is good. I’m in no mood to interact today. Just want to be a recluse and regroup after my trip.
So, I shall. I’ve got all day today — and tomorrow — to catch up. And for once, I don’t need to completely collapse and melt down, after that gauntlet run. I ran a good race, and now I can rest.
Before my TBI in 2004, my weekends were a combination of busy-ness and calm. It seemed like I had unlimited energy, and I could pack a lot into each weekend, including studying things that fascinated me and taking long walks in the woods and working in my yard and doing chores around the house and working on my personal projects and cooking a nice supper.
Yesterday, I did two of those things – a few chores around the house and yardwork. My lawn desperately needed to be mowed. I had not taken a mower to it in over a month. The grass was high. But perhaps waiting so long was for the best, because at the beginning of the summer, huge patches of grass were gone, thanks to grubs. I’ve had grub problems for a number of years, but this year it was particularly bad, with much of my front yard bare patches of dirt. I can’t use any pesticides on my lawn, because I am on a well, and I don’t want it getting into my drinking water. Plus, I tend to spaz a little bit, when I am handling poisons and dangerous objects. I have sudden spasms that make me jump, and then I hurt myself or get the chemicals on my hands or on my face. Not good.
So, I looked around online and found a recipe for mixing mouthwash with alcohol and water and laundry detergent, and I sprayed the grubby patches liberally. Then I put down grass seed and watered it a little bit, and let nature take its course. Within a month, I had a lawn full of thick grass, which I just let grow, to get its root system in place. I didn’t want the grass to have to put a lot of energy into regrowing the blades, and use more of its energy for growing roots.
So, I let it be. And the results are pretty danged good.
No more bare spots.
Of course, yesterday I was sure I’d wrecked my mower a couple of times, as it stalled on the thick, high grass. It must have stalled at least 5-10 times, and each time I wasn’t sure it would start again. But it did. And I was able to cut my lawn relatively even, in the end. I’ll need to make another quick pass today, but I got the job done as I could, under the circumstances.
No 8-inch mohawk.
I also did some cleaning around the house. My spouse has mobility issues, so they can’t do a lot of cleaning, so that falls to me. I did a thorough wipe-down of the half-bath downstairs, and I cleaned the grungiest parts of the full bathroom upstairs. I was seriously low on energy, yesterday, but I did get something done. I also did some more organizing in my study — to the point where I’m comfortable being in the room again. It’s been so messy for so long, I haven’t wanted to spend any time here. That’s different, now, though. And I’m much more comfortable here than I’ve been for quite some time.
I also have more ideas for how to better organize it – I have the right sized boxes that I can slide under my bed to keep a lot of my books that I don’t want to look at anymore. I don’t want to get rid of them. I just need more space. Having those boxes gives me more options. And I can use more options.
The question is – and book-lovers will totally get this – which books do I put away? They are all my “friends” that have special memories associated with them. I’m not sure I want to make those memories disappear from sight.
Alternatively, I could get bigger bookshelves for my study. That might be a good idea.
Book decisions aside, today I am focusing seeking calm. Chilling out my system, so I can relax. I have been pretty uptight for the last couple of weeks – partly because I’m back to helping my spouse with packing and planning for their events every weekend, which can be pretty stressful for me. It’s putting an even bigger load on my system than usual, and I need to find ways to offset that. Things like getting back into my sitting practice… making sure I stretch… getting out in nature when I can… and keeping their crazy-nuttiness from affecting me.
I’ve gotta work on that “CN (Crazy-Nuttiness) Defense” pretty actively. Because it’s really all around me. CN is around me at work, it’s around me whenever I interact with other people. And if I’m not careful, it drives my blood pressure up, which gives me a headache. I’ve been getting more headaches, lately, which is disappointing. But it also shows me that I need to take corrective action.
After all, I can’t expect the rest of the world to accommodate me. And if I know what to do, to keep myself healthy and safe and sane, then it’s really on me to do just that, whenever the situation calls for it.
I also need to be mindful of those times when I am tired and out of sorts and I am more likely to respond intensely to something that normally wouldn’t bother me. My spouse has a habit of starting really energized conversations about good experiences, and then when the conversation is just about to conclude, switching gears to be critical or find fault or start getting really negative about someone or something. They don’t see it as negative – they get a big energy charge out of it. But to me it just sounds like they’re exhaling smog, and I start to choke on it.
I know why they do it – neurologically, they rely on a “negative” charge to get their adrenaline going, so they feel more alert. They are feeling good when they’re talking about good things, and when they start to run out of energy, they resort to negative criticism and adrenaline to “keep the party going” — predictable standard-issue behavior for them.
And if I’m tired (from the animated conversation we just had), I get really angry and upset when they start being critical and talking about behaviors and choices I don’t agree with. It’s insidious — and it always catches me by surprise, just how quickly they can change gears. And it’s a sign of their cognitive issues that they do this — which makes me even more upset.
End result: migraine.
So, I need to step away and catch my breath, slow down my racing heart and calm down my over-wired system. I have to get away from them as soon as possible, so I can breathe freely again… and when I’m calm, I can come back, but not before. Sometimes that takes a while. And that makes my spouse very anxious. They see it as having to do with my brain injury, rather than their own cognitive impairment. Their perseveration seems completely justified to them, and it makes me physically ill to think about what’s causing that — and how they’re not doing all that much to slow down the process.
Cerebrovascular dementia is not much fun. Especially watching it happen to someone you love who is unable to help themself deal with it. Add to that panic-anxiety issues, and it makes it all but impossible to discuss. And if you can’t talk about it, you can’t figure out what’s really going on — and you can’t do anything about it. It’s so critical to control your blood sugar and your moods, so you don’t “blow out” your system. Long-term elevated blood sugar compromises the vascular system. And high blood pressure puts additional strain on an already weakened system. NONE of this is good for the brain.
My spouse also believes that they only have a few more years to live, so they are putting a lot of pressure on me to travel with them before they die. I don’t have a million hours of vacation saved up, so there’s only so much I can do. It’s actually the pressure of them constantly talking about where we’re going to travel and when and how we’ll do it, that weighs me down.
It may be a vacation for them, but it’s an awful lot of work for me. They don’t see it, however. All they see is what they want and how they can get it. Nobody else really matters that much to them, when they’re locked on the target of getting what they “need”.
I have a feeling I’m going to be blogging about my spouse’s decline a good deal, in the coming years. It’s ironic that, no sooner do feel like I’m back on track with my life and I feel like myself again, than my spouse begins to decline. But it does put me in a better position to A) respond appropriately to them, and B) try to educate and raise awareness with others about what the deal is with stroke, vascular dementia, diabetes, and how they all conspire to ruin lives.
Bottom line: Diabetes weakens the vascular system. It weakens the walls of the blood vessels over time. Unregulated blood sugar can make you get crazy about little things, which drives your blood pressure up. That doesn’t bode well for blood vessels that are weakened. And since the brain has so many, many blood vessels, it’s one of the first places that things start to break down, small bleeds happen, cells die, and your cognition gets f*cked. Lack of exercise doesn’t help. The body needs to be moved and challenged to stay strong, and it also needs exercise to clear out the gunk that builds up from stress and other environmental “pollutants”. So, if you don’t ever move, your body isn’t going to get the movement it needs to keep healthy. And if you never move, you can’t keep strong so that you’re able to keep your balance — that puts you at risk for a fall, which may include a bone break or a TBI. None of this is good.
But I’m getting off a tangent. More — much more — on that later.
Anyway, like I said, I can’t expect the rest of the world to accommodate me. Life will run its course. I just need to find calm in the midst, find ways to keep the joy in the midst of others’ pain… to keep calm in the center of the storm. My own internal life is my own space – and that is the only space I have any control over, whatsoever.
I need to make a point of taking very good care of myself. Take my dose of “Fukitol” and head for the great outdoors. Or, if I have to stay inside, keep that mindset of being outdoors and not really giving a damn about what other people do, say, or choose to do with their lives.
That being said, it’s time for a walk in the woods. I do have the energy for that, this morning. No guarantees on what’s happening later today.
I got the critical things done ahead of time, and then I spent all day yesterday with a buddy, going to see an exhibition of Japanese art and culture. It was pretty amazing – especially seeing things that real people made with their hands, instead of something that they made on a computer. The handiwork of some of the furniture was amazing.
I wish I had more energy to take it all in, but yesterday was a pure adrenaline day. I had to help my spouse the night before with a business activity (their back is out, so they need assistance), and not only was I pushed really hard to do a lot of things, but I was up past midnight on Saturday – and I rarely sleep in – so I did not get enough sleep for Sunday.
Yesterday was good. We checked out the art, the craftsmanship, the joinery, the materials… and then we got some lunch – late. My routine was completely blown away. We were near a neighborhood where I used to eat, and sure enough, the old taqueria was there, where I used to always get massive burritos for a very low price. The store burned down, during the years after I moved away, but I thought for sure they would rebuild, because they were so popular – and sure enough. Line was out the door. And the food was still amazing.
We ended up hanging out the entire day, and we had dinner at my home with my spouse, who is actually much better friends with this individual than I am. We’re all on good terms, so it was a good time.
I just had no time for myself, which is a problem on the weekends. I really need my downtime – space when I am only doing things that are in my head and my intentions. Or I pay the price.
I’m feeling it today. I started to get a migraine yesterday, but I got an hour-long nap, and that helped. Work, work, and more work. Not so great for my system, which needs balance.
This week I will balance. I don’t have a lot of appointments. Just two, compared to the past. I think I’m going to back off on my acupuncture and chiropractor, because I am really tired of not getting home till 8:00 p.m. and then having to make dinner, and not eating until 8:30 or 9:00. It’s too late for me. And I’ve been pushing myself for too long, trying to fit everything in.
I just want my routine back. I just want my regular schedule. I have to have it, or I am toast. And if others cannot accommodate me, too bad.
It’s actually good that I am getting to this point. I have been pushing myself very, very hard, for a long time, and it’s about time that I really focused on just taking care of myself in ways that are less rigorous — and are closer to home.
So, last night I was at my very end. I’d had a long and very tiring week, and my spouse has been out of commission with their back out. They don’t take good care of themself, and they spend most of their day sitting around or lying down. I don’t see how anyone can even function on the lack of exercise they get. It’s like watching them disintegrate before my very eyes.
I work really hard to keep myself in good working order. I fall behind, of course, since I’m human. And there have been long stretches of time when I did not get the kind of exercise I needed. But I’ve never allowed myself to just “go to pot” like they have.
I don’t see how they can even live with themself.
But that’s them, not me. And that’s the toll that mental illness takes — unaddressed, untreated mental illness. Their dysfunction is so profound, they cannot even see how non-functional they are. Their answer to it all, is hiding their dysfunction from others, so they can continue to live that way. I know why that is — I know (pretty much) what they went through as a young kid that made them this way. Their father was a World War II vet, and the things it did to him, screwed up their whole family — all the kids, and beyond. One of the grandkids was a convicted felon before the age of 16, and the offense was pretty horrifying. That’s what can happen, when dysfunction is allowed to fester, everyone is in denial, and you hide your issues from everyone.
The fallout from WWII that I’ve lived with for the last 25 years, is one of the big reasons that I am a major supporter of veterans. I don’t do nearly as much writing directly about vets here, as I should. My hope is that I can write things that will help vets in a way that reaches them / you as people. I’m not a vet, and I wasn’t raised in a military family, and I don’t want to take liberties, writing about that kind of world that I don’t know, myself. I want to be respectful. But maybe I need to do more writing specifically for vets. It’s unconscionable to me, how my country sends folks off to fight for us, then abandons them when they come home.
Anyway, I’m going off on a tangent. What I started out saying, was that last night, I was done. I had a long week, and my spouse was needing a lot of attention and help. It was one thing after another, and I was so wiped out, I had to just go to bed early, which I did.
Last night, the weekend seemed like too much for me to handle. I have a number of things I need to take care of – some that are left over from last weekend. I had a number of time-consuming things to take care of, which ate up a lot of my spare time, and then I ran out of steam. So, this weekend I’m filling in the blanks.And last night, it seemed like way too much for me to handle. It was just overwhelming, the variety of things I had to get done.
This morning, though, I spent some time writing everything down in my notebook, and breaking it out to see what I would do.. and when. As it turns out, there is not so terribly much to do. And it will even leave me time to do some things I have been wanting to do, but didn’t think I could, last night.
Turns out, I can do them. If I stick to my plan today, I can get a lot of things done, so I can do the one thing I really want to do in the morning.
I just have to get it all down on paper. Get it out of my head. My head gets spinning, and then I get confused and tired and more confused and more tired. And then everything looks like hell.
That was how it was in my head, last night – not a fun place to be. I just wanted to blow up. Or throw up. Or both. But I kept it together and was just very quiet, all evening. I was really working at keeping myself from going off the deep end, and I drew the line, when my spouse urged me to eat something sugary and stay up later, watching t.v.
That’s about the last thing I needed. So I declined. And I got about 9 hours of sleep, which is exactly what I needed.
So, lesson learned. Again.
Tonight, after I mow my lawn, I think I’ll watch some martial arts movies. That will put the icing on the cake of what’s starting out as a beautiful day.
Well, my spouse has done it again. We were supposed to leave for our vacation today around noon, and now they tell me that they’re not going to ready in time. They may — may — get up by 11:00.
That’s pretty disappointing. But then again, we are taking two cars, so I’m not going to be dragged down by their sluggishness. I have to come back home on Sunday night in order to be at the office from Monday through Wednesday. Wednesday night, I’ll head back out to the condo we’re renting, a few hours from home, and I’ll work remotely in the morning on Thursday and Friday, then take afternoons off.
I’m not sure why this “change in plans” surprises me so much. Maybe because my spouse is picking up another friend to join us for a few days, and that friend’s family is going out of their way to drop them off half-way. It seems incredibly unfair to everyone (except my spouse), that everyone’s schedules need to be re-jiggered to accommodate them. People have better things to do, than wait around to find out when they should leave the house.
If anything, it seems a bit sociopathic on my spouse’s part – like nothing matters except them and their own wishes and needs. Then again, they do have neurological issues, as well as some cognitive impairment and possible dementia, so they may not even realize that they’re being selfish. The whole neurological decline thing is a real drain, and if you forget what’s going on with them, it can be maddening. When they’re challenged, they get reallyangry right off the bat, possibly because they get scared at being caught unawares and not being able to think right away. They lash out and yell and threaten and cry and so forth. On the one hand, some people think they’re being manipulative, but I think it’s also a sign of cognitive decline. They really do get scared — and then they use their anger and blustering to stop me from saying or doing anything else… and that way they buy some time to catch up.
The thing is, once they get past their hemming and hawing and blow-harding, they re-orient themself to what’s happening, and then they calm down and can carry on a usual conversation.
The main thing for me is to not take things personally and get really upset when they start acting out. That happens all too often, and I forget that they’ve got cognitive issues. I take it personally and get so upset and bent out of shape — everything balloons in my mind, till the argument is not about what’s happening right in front of me, it’s about everything and anything that’s possibly related to my frustration at that point in time. My own brain goes haywire, too, so we feed off each other — and not in a good way.
Fortunately, I am getting better about checking in with myself and telling if I’m starting to get too wound up. Then I can back off — just walk away and cool off, and give us both a chance to simmer down. It’s just both our brains going haywire, and we both get scared. And we lash out. It gets to be a little much, to tell the truth, and some days I just despair about that downward cycle. But if I can step away and have some time to myself and get enough rest, that helps.
Taking care of myself really needs to be my top priority, in dealing with my spouse. When I get tired, my brain doesn’t work well, and of the two of us, I’ve always been the more functional — by a lot. I’ve been their caregiver, pretty much, for nearly the whole time we’ve been together. Their health has often been bad — especially their mental health, and after a serious neurological illness they had back in 2007. They’ve got a ton of history behind why they’re so mentally ill, and there’s plenty of reasons why they have the issues they do. Panic. Anxiety. Depression. Paranoia. Verbal aggression. A real roller coaster of emotions — with very little calm in the meantime.
Does it get old? Oh, you betcha. But they’re the love of my life, so you take the bad with the good.
And you take care of yourself.
So, this “vacation”, I need to be really clear about what I will and will not do. I need to not bend over backwards for them, just because they’re on vacation and think they should be treated like royalty. They’re not the only person who deserves a break, and I need to get some rest, too. In some ways, coming home from Monday to Wednesday is going to be a real relief for me. I’ll have the house to myself, I’ll be able to eat whatever I like — actually much healthier than how my spouse will eat. And I’ll be able to get to bed at decent times without that late-night drama they love to stir up.
So, it’s all going to work out for the best, I believe.
I just have to remember that my spouse is actually impaired in some significant ways, and I need to adjust and adapt and plan ahead.
And not get my hopes up for things that have never happened before, and will probably never happen, period. Like getting on the road at the pre-agreed time. Or having a low-key and very no-nonsense sort of trip.
The main thing is that I find a way to really enjoy myself, take care of myself, and actually get some rest. The condo where we’re staying has three floors, and I’ll be downstairs in a quiet, dark bedroom with couch and desk and its own bathroom, while my spouse will be up on the top floor. It works out well, and it leaves room for both of us to move at our own paces and have some freedom from each other. We’re both getting older and a lot more set in our ways — and a lot less willing to compromise.
More rigid? Yes. But also more discerning, and not so willing to give ground on things that really matter to us personally.
I think a lot of couples find this as they get older. They either split up, or they stick together and find a way to peacefully co-exist, whilst pursuing different interests that are all their own. I know I’m at that point in my life, and it’s not worth hassling over. It really isn’t.
So, I just need to take care of myself and have the vacation I want. Whatever my spouse does, is on them. No skin off my teeth. Not if I don’t let it.