Back from vacation, and doing things differently

Rowing through the fifth circle of hell – anger

So, my “vacation” was quite different from expected. My spouse got really sick, so I spent the bulk of the time taking care of them, running errands, and making sure they stayed fed and were headed in the right direction – towards recovery.

I did almost nothing that I had planned. I had thought I’d have time to do some writing, but to be honest, when I was there, I didn’t want to do anything other than just roam around, take long walks, and explore parts of the nearby national park I hadn’t seen in years.

One thing became very, very clear to me, while I was away — I have let myself get too complacent, too lax, too mellow. The net result of my chilling out, has been putting on some pounds and also losing my stamina. Keeping up with everything when my spouse is “holding invalid court” — as a sick person who needs to be waited on like some sort of royalty — is NOT easy work. It’s pretty draining, if I don’t stay on top of things.

So, it was pretty rough. But that’s not because of all the demands. The fact is, I am not in as good shape as I need to be, and all the running and juggling (figuratively speaking) showed me where I need to improve. I used to do all this — and a whole lot more — as a matter of course, each and every day. But over the past number of years, as I’ve focused more on taking care of myself and making sure I didn’t get overrun by the craziness of my employer(s), spouse, and TBI recovery, I’ve lost my edge.

And I need it back.

I’ve gotten way too lax about things, and I’ve “let myself go”, for the sake of just enjoying myself and taking things as they come. But you know what? That’s not me. I am by nature a very “on” person, who needs some “off” time on a regular basis to recharge. I’m not meant to be an “off” person who occasionally “turns on” to kick into gear. I need to stay active and involved in my life — to live my life to the fullest, and really keep my energy high. If I don’t, the feeling seems to backfire, and I end up having a whole lot of energy “double back” on itself… it eats me alive.

So, I need to live. And live fully. Not with panic, not with anxiety, but fully alive.

Just kicking back has become a way of life for me, which is not good at all. I’ve gotten into that habit in part because of my past job that had me commuting so much every day. It’s tough to stay active and engaged, when you start and end your day with an hour’s worth of driving. What a horrible life-suck that was.

All that sitting got me tightened up — my muscles, my fascia, my mind — and I was so full of resentment and anger that I had to continually manage, to keep it from wrecking my life — that I got sucked into a downward spiral that shot me straight into the doldrums, where I languished. Hoping against hope that something would change. Eventually it did, but what a miserable time that was.

It was like renting a room in Dante’s Fifth Circle of Hell — Anger — and not being able to get the money together to move out to a better place, and having to make the best of it by getting to know my neighbors, have some barbecues, hang out… you know, make the best of it, all the while wishing to God something would give.

It didn’t give. For three long years. And it really was hell.

Now I’ve been out of that world for three months, and I’m starting to normalize… get my balance back… remember what is important to me. I don’t have to put all my energy into dealing with the emotional flack of a horrible workplace, barely being able to function on the weekends, just spending all my free time languishing like a glorious lump.

I can start putting my energy into the healthy things again. And I can get back to my practice — my martial arts of living.

Over the week when I was balancing work and vacation and my spouse’s illness, it became clear to me that I needed a better way of handling their mental illness. They have suffered from panic/anxiety and depression for almost 20 years, and it has wreaked havoc with their life. All the while, they have been unable to admit that they had a real problem, and that it was hurting them. They have treated it like it was protective for them — living less of a life was keeping them safe from untold dangers. I know where that comes from — their childhood, and also their family story, which is all about unseen threats which must be managed.

Over the years, I have dealt more or less effectively with their mental illness, seeing to various degrees, the depth of their dysfunction. I actually dealt with it pretty well, from the start, even when they were absolutely nuts with anger and rage and fear and a seething cauldron of hyper-fight-flight reactions to everything, including their own shadow. I could keep my own attention trained on my own activities and issues, and I could steer myself (and sometimes them) in a better direction.

Over the years, I’ve had my own issues to deal with, and many of them have been really hard for my spouse to deal with. The old anger, the rigidity in my own mindsets, my outbursts and unpredictability… I was a real piece of work, I can tell you. I’ve been brain-injured a number of times, which made me incredibly difficult to deal with, when I was tired or overwhelmed (which was a lot of the time).

But we had a kind of balance going on, that worked for both of us.

Then I fell in 2004, and everything came to a head. Everything really fell apart, and we were on the verge of breaking apart after 14 years. I didn’t even realize it, at the time. I was really out of it, had no idea what was going on with me.

Anyway, what I realize now is that things have often sucked with us, from day one. But the things that have been good, have been well worth all the suckiness. It’s like the suckfulness didn’t even matter, because the good was more than enough to offset everything. Plus, no marriage is perfect, so was I going to just ditch the love of my life because not everything was idyllic all the time? Nope. I dealt with it.

And now I need to deal with it again. I need to deal with my spouse’s demons, their mental illness, their panic and anxiety and encroaching dementia, with a form of martial art. Keep calm, keep centered, and be ready to deal with the demons that threaten to attack. They are very real demons, and making light of them doesn’t serve me at all. Denying that they exist doesn’t help. And avoiding confronting them is the worst thing I can do.

I need to deal with this. Because try as they might, my spouse has limits, and there are things they just refuse to do for themself that will make things better. They’re trying, yes. They’re really trying. But the demons are always there in the background, with an eye out to get hold of me, too.

They’re greedy demons — panic, anxiety, fear, aggression. They feed on the energy of others, and how they love to feed. They are insatiable, and they will stop at nothing, till they get what they need. I can’t forget that they exist. I’m not saying I have to live in fear. Far from it. I just need to live with awareness, and figure out how to keep my own essence safe and protected, while the demons swirl around, seeking madness.

It can be done. And I’ve been working out, first thing in the morning, for the past four days, strengthening myself and doing exercises to stir up my stagnant “chi” and get good energy flowing in me. It’s helping. And I need to stay with it, not get bored and go do something else, when it all feels too familiar and boring.

Life is waiting. Get strong. Be smart.

Onward.

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Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:
  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

  1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
  2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
  3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
  4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
  5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. Onward.

I must be getting better… a lot better

Sometimes you have to bring your own light

Got back last night from my return drive home. Found my spouse sitting in a dark house, watching television. Now, that’s depressing. They were really happy to see me… but it only took an hour till they started digging into me and my family about in-law pet peeves.

That’s par for the course. I’ve been hearing this same litany of complaints against my side of the family for over 20 years. The thing is, it hasn’t bothered me in the past, and it was kind of a semi-annual ritual for my spouse to complain bitterly about my family being the way they are. It really is my spouse’s loss. My family isn’t perfect — whose is? But they are my family, and they helped make me what I am, so you can either spend your time getting all revved and riled about something that cannot and will not change, or you can look on the bright side, find the things that are good and positive, and focus on them.

That’s what I choose to do, and it has made life more than tolerable for me. I’ve been able to find good in even the most miserable conditions. Now, miserable is miserable, for sure. But there’s always something good to concentrate on, that keeps you from getting all worked up and unhappy about things.

In the end, it’s my spouse’s loss that they can’t see the good in my family. And the fact that I’m not willing to dive into that old back-and-forth, and I managed to keep it from sliding downhill into an all-out fight… well, that’s signs of progress.

I need to remember that my spouse always starts to get “revved” around midnight, which was when we started talking about the trip. That was a killer for me, because I should have been in bed by then, but they wanted to find out about the trip and hear the details. The thing is, because they start to “rev up” around midnight, they wanted to fight, which made it really difficult for me to wind down and get to bed. It was just a poor choice on my part. The poor choice was all about me forgetting that my spouse gets anxious and aggressive and wants to fight, around midnight, and giving them the benefit of the doubt.

Mistake. Note to self — no matter how optimistic you may be about your spouse’s mental health at midnight, every single time, they prove you wrong, and you end up getting the short end of the stick. As in, not nearly enough sleep — like five hours or something like that. If I’d had my wits about me, I would have just turned in and said we’d talk about the trip today, after I had some time to let it all sink in — and catch up on my sleep.

Also, last night showed me pretty clearly that I really am getting a lot better. I’m in a good space… while my spouse is not. If anything, they’re getting worse. They really do seem to be slipping away from me… fading away, wallowing in outrage and upset, and just getting worse and worse. I think what’s happening is that they are blowing out their system — they’re not watching what they eat or getting adequate exercise, and because of that, their vascular system is not holding up. So, when they get all worked up over things and their blood pressure gets up, it blows out the little capillaries and connections in their system — their brain, possibly their kidneys — people have talked to me about this, and I didn’t really want to come to terms with it, but being away for a few days just makes it all the more obvious to me that they are not well.

But I am.

And I’m getting better. I’m getting much, much better — each and every day. I’m focused on it. I’m working at it. I’m making it a top priority. Part of my motivation is seeing how sub-par my spouse is functioning. Seeing them going downhill so steadily is a great motivation for me to do more to keep myself fully functional — and even improve. I know in my heart and mind that we have more “say” about what happens to our bodies and our brains, than popular conventions give us credit for. I also know in my heart and mind that even if I am going downhill, it’s not going to be by default. They’re really going to have to work at killing me, to take me down.

I’m not going down just because “that’s what happens” when you get to a certain age.

Another thing that’s really motivating me, is seeing the rest of my family and seeing how they’re living. That’s not how I want to live, at all. They are constantly on-the-go, and it’s really exhausting. They just go-go-go, and they don’t spend a lot of time to stop and think things through. They’re all on auto-pilot, doing what everyone around them does, and that’s pretty depressing in its own way. They do have connections with a larger community, and they do have a strong sense of belonging, but the community they belong to, leaves a lot to be desired, in my opinion.

If their community were so great, I’d still be there. Note well, that I am not.

So, on both ends, I can see that I’m doing well. I’m doing better than ever. And while things are rough and rocky, here and there, the fact that I can see that things are not how I want them to be, is a great sign of progress.

Once upon a time, I would get sucked into the fights and arguments and bitch-fests with my spouse, and I’d feel all the more alive and invigorated from it.

Once upon a time, I could not spend any time around my family without wanting to kill myself. Literally.

Now, neither of those are true. I’m finding a healthy middle ground, and it’s good.

Now, it’s time to get on with my day.

Onward.

 

 

 

 

 

 

 

 

 

Another early morning, and life goes on

I woke up early again today – got about 6 hours of sleep, total, which is not great, but at least I slept at all. Funny – when I was back from my weekend road trip, I slept 8 hours straight, which was pretty amazing, but since I’ve been back… well, not so much.

That’s to be expected, I guess. I was very, very active, last weekend, and I didn’t get a ton of sleep. But now I’m less active, just dealing with the day-to-day, as well as additional irritations at work. So, that’s getting to me a little bit — waking me up and keeping me up, no matter how I try to get back to sleep.

That whole adrenaline business is a trip. My head gets going, and before you know it, my body is awake, and there’s no turning back. The melatonin that was working for me, the first few days, is not working anymore.

Oh, well. Whatever. I’ll just use the time to catch up with some things that are hanging over my head. I have a lot of things I have to do, which are nagging at me. I’m sure that’s not helping me at all. It’s just this constant stream of to-do items that never seems to give me a break. Plus, my spouse is going out of town on a business trip this weekend, so I need to help them get their act together. They’re seriously spinning… have been a basket case for weeks, now. It’s pretty much of a drain, especially because all that spinning is coming from inside their head, with them creating drama and conflict where none existed before, avoiding uncomfortable truths about difficult situations they are creating with others, spending so much time justifying things that could easily be faced and fixed… holy crap – the things we do to ourselves and others…

But this weekend, I will have some peace, and I’ll be able to move at my own pace, get some work done, and not be intermittently distracted by their need for constant stimulation. How the hell did I end up with such a needy person? I swear. … Oh, actually, I know how that happened — once upon a time, I needed to feel needed, so marrying a profoundly needy person was just the ticket to make me feel good about myself. Now, I’m older, more experienced (I won’t say “wiser”), and I’ve dealt with a lot of the things in my life that ran me ragged, so I don’t have that same need to be needed.

Funny how that happens.

My spouse, however, has not changed much. If anything, they’ve gotten more needy over the years. They haven’t been helped at all by two decades of mental health issues, as well as increasing physical issues, thanks to all those years of poor habits (no exercise, poor food choices, etc)  I’ve stayed positive and supportive over the years, and I continue to be — encouraging them to make healthy choices and handle things more pro-actively — just being as supportive as I can. Yet, for some reason, they don’t seem very interested in being positive and pro-active. Unless they’re around other people. With me, it’s all about being a drain and a drag, from what I can tell.

I’ve been sorely tempted to leave them, many times over the past several years. Their bad behavior, their abuse and neglect of self and others, their freeloading (if you want to call it what it is)… it all gets to be a little much, after a while. At the same time, though, that’s not all there is to them. Like anyone, they are a mixed bag. And I’ve reached the conclusion, many times over, that the pluses of staying with them far outweigh the minuses. So, I stay. Plus, I don’t want it on my conscience that I ditched them when they were declining — which they are. I’m looking at a lot of long years ahead, if they hang in there… slowly spiraling downwards, mental and physical capabilities decreasing, thanks to continued poor choices.

I wish I could see another path ahead — maybe there is one — but short of us becoming independently wealthy to pay for the level of care they need to get their physical and mental house in order, I don’t have much hope.

Funny, how much your health can depend on whether or not you can pay for it. To do more than survive (and keep your teeth), you’ve got to be pretty much made of money. Or know how to work the complicated, convoluted system.  I’m in neither camp.

I’ve become a bit philosophical about my situation — kind of watching it from a detached distance. They make all sorts of really bad decisions about the people they do business with, and how they interact with people. They’re a bit of a sociopath, actually, with a hefty dose of narcissism tossed in there for good measure. All they seem to know, sometimes, is their own pain — and how to assuage it. If that means they take advantage of others and use them and take-take-take, then so be it. At lest

I also never know, when my spouse drives somewhere, if they will come back alive, or if I’ll get a knock on the door with a couple of cops telling me my spouse was involved in an auto accident, and can I please come down to the morgue and identify the body. They’re not a great driver, and they have trouble seeing at night, and something about the way they drive infuriates other drivers, who have actually chased them down the road, threatening them — for reasons my spouse cannot fathom. They also love to talk on the cell phone when they’re driving, which is a pretty terrible habit for them to have, considering that they have trouble driving even without a cell phone glued to their ear.

I often feel sick to my stomach, when they go away, because I don’t know what’s going to happen. But I have to let that one go. It’s beyond my control. There’s no point in me making myself sick over them. I have to take care of myself. I have to keep my own act together, or we both go down.

It’s just part of getting older, I guess. Couples often experience one partner losing their capabilities before the other — this past weekend, when I was visiting a relative in a rest home, I saw a number of couples where one was visiting or taking care of the other. It happens. Mild cognitive impairment sets in. Issues come up. Accidents happen. But people hang in there. I saw spouses sitting with spouses who’d had strokes, as well as couples sitting together on park benches – one obviously doing better than the other. It happens.

And we deal with it as best we can. In the case where there’s an injury that heals over time, that’s one scenario. But in the case where there’s no substantial recovery imminent, and what lies ahead is basically a long, slow slide downhill…. that’s another. And that’s the scenario I’m looking at, right now. My spouse is declining. That much is clear to me. So I’d better brace myself for the coming storms.

It’s funny — I’ve been denying this decline for some time, now. I haven’t wanted to think the best, I’ve wanted to be supportive and hopeful and positive. But a few weeks ago, I just quit staving off the sneaking suspicion that I’m married to someone who’s just not going to get all that much better — and is probably going to get a lot worse, in the coming years. Who knows if it will be 5 or 10 or 20 or even 30 years? It could go on that long. Granted, I’d be living with the love of my life, so that’s a plus. Yet, after a certain point, do they stop being the love of my life and become someone different?

I don’t know the answer to that. I guess I’ll find out.

If they don’t kill me first, with the stress…

Assuming that I don’t go to an early grave from dealing with a crazy person, I’m starting to look at my different options. I have always been deeply opposed to rest homes — they depress the crap out of me, and I can’t stand the thought of just “dumping” someone there. At the same time, though, after seeing my relative in the home where they’re at, and realizing that they actually are receiving good care and are more engaged on a daily basis, than when they were living at home full-time, I’m of another mind. It might turn out to be a good idea to make arrangements for them to go to a home, if they get to be too much for me to handle, personally. It all depends on the home.

Then again, if we could simply develop better community connections and be more social and have more access to people — instead of living off in the woods in this house, miles from our nearest friends — that could be a better alternative. Of course, none of the changes would happen without money, and since we have almost none of that anyway, it’s premature to be talking about any of this.

Still and all, it’s a relief to be thinking it through up front. At least I’m not denying it anymore. If this change is going to happen — and it has already started — then I need to keep fit and stay strong and take action on my own behalf. There’s no sense in me losing my own quality of life, because of issues someone else refuses to face and deal with. When all is said and done, I’ve got to look out for myself and make sure I’m as fit and as healthy and as strong as I can be.

Speaking of which, I’m going to join a gym. There’s a special they’re advertising that ends at midnight tonight.

Onward.

 

Making room for more

And so another small chapter draws to a close, and a new one opens. Today I am finally going to start my vacation. The past few days have been pretty difficult for me, being off work notwithstanding. Since Friday night, we have been hosting a friends, in one capacity or another — there’s the friend who showed up on Friday night and has been staying with us at the vacation rental, whipping up drama along the way and generally being underfoot. There’s the other friends who came out for the evening last night and had dinner with us. And then there are the friends who are on the phone, calling and checking in and needing something when we get back next week.

It’s been a rough several days for me, with Saturday through yesterday (Tuesday) not giving me much rest or a break from constant stimulation. And it’s been driving me nuts. I am so exhausted, my spouse doesn’t seem to get how fundamentally fatigued I am — not just today, but in general — and that I need rest and quiet for more than an hour at a time. And for some reason they don’t get the idea of long-term sleep deficit.

How ironic. When they are just a little bit tired from an exciting day, they will sleep for 12 hours and not think about it. But when I’ve been going full tilt boogie for weeks on end, with maybe 5-6 hours of sleep a night, they still expect me to be part of their late-night plans.

Frankly, it makes me want to divorce them. I can’t live the rest of my life exhausted, and I feel like they have just used me up and are ready to throw me away. I was so tired the other morning, after being constantly pushed, and being woken up at 5:30 by them being up and about after staying up all night, I just snapped and flipped out at them in that way that makes them afraid of me, and has them “handling me with kid gloves” for days on end.

I just need a break. From them. From the people. From the distractions. From the social activities that give me no enjoyment, only drag me down and make me feel broken and inept.

I need some solitude. But at the same time, my spouse still needs me to help them do the most basic things, like put on their shoes and eat regular meals, because they either cannot reach their feet from back pain, or they cannot be bothered to keep on a regular schedule.

I don’t know. I don’t want to sit around bitching about situations that I have helped to create. I’ll have to find a way to work with this, if I want this marriage to work. For the most part, it does, but there are some things that are so critical as to be non-negotiable. At least, they should be. Like getting adequate sleep and recovery time.

The real problem is not with my spouse, however. The real problem is with me – not being clear about what I need to do and have to take care of myself, and not speaking up for myself. It just depresses the hell out of me when I have to fight for something as basic as a good night’s sleep. It seems like the sort of thing that should be self-evident and go without saying. That, and routine.

But my spouse doesn’t see it that way. From their perspective, my need for structure makes me a “Nazi” and it ruins their spontaneous fun. They like to just go with the flow… as though the world were made up of limitless time and money and resources. And if they don’t get what they want, then it’s a cruel crime being perpetrated on them to make them unhappy. Everything is personal with them. And they get very peeved very quickly… and they’ve very vocal about it, as well.

The thing is, I knew a lot of this when we first met. And back in the day, it wasn’t a problem. It was just one of the things that made them… them. And I loved them for it. Time change and people change, of course, and ever since my TBI in 2004, I have had less and less patience for that kind of behavior. Also, since commencing my recovery in 2007, I have really changed a lot, becoming less and less like them, seeing how a lot of our behavior has been really unhealthy and outright harmful.

And my tolerance has dropped through the floor.

Which is never good. Ultimately, as much as I carp and complain about the traits and qualities of others, the real issue is my tolerance level, and my ability to take care of myself without someone else thinking for me. It’s just part of being alive and being an adult, of course. And it’s not like I’m being held against my will in a horribly abusive situation.

Far from it. I just need to tweak a few things and more actively manage my own fatigue levels.

I need to keep myself from getting this tired, this delirious, this fragmented. Of course, the past several months have been sheer hell, and those types of conditions don’t happen all the time, so this is a bit of an anomaly. I know how to recover from this. And I will recover. It’s just a matter of managing it better.

And also making room for it, when it happens.

Some of the things that have made this time even more challenging than it has to be, are:

  • I haven’t made sure that I got enough rest each and every day. I haven’t communicated clearly to everyone that I need to rest, when I need to rest, and I’ve pushed myself harder than I really should have.
  • I haven’t worked out with my spouse the “terms” of my recovery. My exhaustion has sort of blind-sided them, when it’s come up, because they think about their own needs 99% of the time, and if I don’t tell them over and over what’s going on with me and what I need to do about it, they get very angry and resentful towards me.
  • I haven’t made it clear to people just how exhausted I am — most of all my spouse. I’ve just been pushing myself on adrenaline, and at the same time my gears are pretty much stripped, I’m still exceeding the proverbial speed limit — in 2nd gear. To all appearances, I’m still functional. I can still drive. I can still walk a straight line. So, I should be fine, right? Not exactly. Judging by my appearances, my spouse has been very unclear about the problems I’m having, which has made it tough to communicate to them and manage their expectations and also carve out any type of relaxation time for my recovery.
  • I am still pretty much in denial about living with a narcissistic borderline sociopath who lies and cheats and steals to get what they want out of life, and lives on the edge because that’s the only way they can every feel truly alive.

The last point is the main one, which makes things difficult. I just need to face up to the fact that I am married to and living with someone who has been deeply, deeply wounded in the past, and is still hobbled by their scars. I cannot even imagine the hell they went through as a child, even from the partial details I know (which is not everything, because they can’t remember a lot, themself). Their old wounds refuse to heal — in part because from what I can tell, they cannot bring themself to face the whole truth about their family situation. And they keep going in spite of it.

That last bit is what I need to focus on — the fact that they keep going, no matter what. Because as difficult as it can be for me to live with them, they actually do a lot of great work with people. The work they do with others to help them heal has literally saved lives. And there are countless people with a similar background, who have been helped — really restored to life — by their influence in their lives.

And this is what keeps me in this marriage, continuing on, despite the harm and pain and struggle. Because what comes out of this marriage is life-giving and restorative for many, many people far beyond the domain of our relationship. And as much as I complain about their negative traits, the positive traits are what help keep me alive. I wouldn’t still be here, if it weren’t the case. In fact, this blog is happening and helping people, because of the stability and support that comes out of the good parts of this marriage. My spouse doesn’t know I maintain this (as far as I know), but the support they offer and the help they provide does keep me going.

So, this marriage isn’t just about us, it’s about the work that we both do. And the stability of this marriage, for all its ups and downs, makes it possible for us both to do our work.

The main culprit in this dynamic is intolerance, judgement and fear. It’s me getting uptight when I hear them making up stories to make other people feel better, or to get their own way. It’s me focusing on the negatives instead of the positives, and making things much worse than need be. It’s me not taking care of myself, not accepting the fact that I need to sleep — a lot — and I need to be proactive in my management of my own issues. It’s me not including my spouse in my recovery and recruiting their help in getting me back on track.

Yes, they do have some serious mental health issues. But at the same time, they do an awful lot of good in the world and they help an awful lot of people on a regular basis.

Nothing is 100% good or 100% bad. There are up-sides and down-sides to everything. I just need to find the up-sides and stick with them.

Because ultimately, making room for the “bad stuff” helps the good stuff happen all the more.

 

Here’s Hope – Traumatic Brain Injury Does Not Increase Risk of Dementia

Traumatic Brain Injury Does Not Increase Risk of Dementia, According to New Study Led by a Mount Sinai Researcher

A history of traumatic brain injury (TBI) with loss of consciousness (LOC) is not associated with an elevated risk for developing dementia or Alzheimer’s Disease, according to a study led by a resesarcher at the Icahn School of Medicine at Mount Sinai. But recent TBI with LOC sustained in older adulthood is associated with an increased risk for mortality.

New York, NY (PRWEB) December 26, 2012

A history of traumatic brain injury (TBI) with loss of consciousness (LOC) is not associated with an elevated risk for developing dementia or Alzheimer’s Disease, according to a study led by a researcher at the Icahn School of Medicine at Mount Sinai. But recent TBI with LOC sustained in older adulthood is associated with an increased risk for mortality.

The research paper, titled “Risk for Late-life Re-injury, Dementia and Death Among Individuals with Traumatic Brain Injury,” was published November 21 in the Journal of Neurology, Neurosurgery & Psychiatry.

“There is a lot of conflicting information in the literature about the link between TBI and dementia. The findings from this study do not support the commonly held belief that TBI leads to dementia,” said Kristen Dams-O’Connor, PhD, first author of the study and an Assistant Professor of Rehabilitation Medicine at the Icahn School of Medicine at Mount Sinai.

Adults aged 65 or more who have had TBI with LOC at any time in their lives have a higher risk for subsequent re-injury, according to the study. This is the first study to look at the risk of re-injury among older adults. Researchers also found an increased risk for mortality, among older adults who report a recent TBI with LOC.

“The increased risk of re-injury in older adults as well as a link between recent TBI and mortality underscores the need for effective strategies to prevent injuries and re-injuries in this population, ”said Dr. Dams-O’Connor, who is also a psychologist.

Read the full press release here >>

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

What REALLY happened

Storms happen

Just a quick note before I head out the door to work — I had a somewhat rough weekend, feeling sick and out of it, after my meltdown on Friday. I really felt like I’d screwed up, and I didn’t know how to make it better or what to do to fix it. I knew that I’d been over-tired, that I’d been stressed, that I’d really had a hard time handling everything, and that the next time I needed to do a better job of managing my time and my energy — and come up with an alternate plan, in case the first one doesn’t work out (d’oh).

Yesterday, though, while I was doing some work around the yard, I was giving this all a lot of thought, wondering what the hell would have possessed me to say and do the things I did. It made no sense. I know better. I have better sense. I am capable of better things than that, and I know it. I tried to do better. I really did. I almost pulled it together a bunch of times, but I could not let it go. And it tore the sh*t out of both my spouse and me.

So, why didn’t I do better? Why did I end up getting hijacked by those emotions and carried away to the abyss? Seriously, the things I was “up against” were minor, compared to other more serious things I’ve faced with more agility and control. So, why was I in such terrible form on Friday?

It occurred to me that the thing that got hold of me was not psychological. It was not mental. It was not a problem with my thinking. After all, on Friday while I was having that meltdown, there were periods when I was completely calm and lucid and at peace — then BAM! — everything changed in an instant, and I was off to the races again. The only explanation that fits, is that it was an actual neurophysiological reaction — a physical thing that got sparked by something that actually precedes rational thought in my mind. Of course, I could not defend against it, because it got hold of me before my mind could get a hold on it. And that has the hallmarks of an over-activated fight-flight response written all over it.

That is, it was not a problem with my thinking, per se, it was a problem with my body. The whole drama was based on a purely physical response. It was not a psychological drama that I created, it was a physical phenomenon — a physiologically rooted set of behaviors that kick into action way before any kind of logically calm and mindful activity could take place. In fact, it was based on a system of response that is hard-wired into me (into all of us, actually) to save me from being burned up in a fire or carried away in a tsunami. When things seem dangerous (and my body is primed to be hyper-alert to danger), like they did on Friday when things weren’t working out the way I wanted them to and I was really uptight over not having enough time to rest, my fight-flight kicks in big-time. And then look out.

Like on Friday.

Oh – I’m running out of time. Gotta go.

More on this later.

One last thought for the day: 50 bucks says that before the end of the decade, people are going to have a friggin’ clue about the role the autonomic nervous system plays in not only trauma and PTSD, but problems with TBI healing and recovery, panic-anxiety, anger management, various behavioral syndromes, ADD/ADHD, self-injuring behaviors, mental illnesses of many kinds, as well as autistic spectrum disorders… and they are going to actively incorporate physiological therapies (including regular well-designed exercise) into the mix that target specific physical elements that need to be strong and balanced, in order to get your act together. Less drugs, more exercise and attention to the body. Better health overall.

And fewer meltdowns. At least for me. (And not before the end of this decade for me 😉

‘Cause seriously folks, it’s all connected.

More on the Polyvagal Theory (pdf) later. It helps explain what really happened on Friday.

From TBI to stupid and crazy and back again

I checked my stats this morning briefly, and as is often the case, a lot of people have found their way here by searching for information about tbi/concussion making you stupid or crazy or both.

Can tbi affect intelligence? Why does concussion make you crazy?

These are questions that people search on, time and again… and they often end up here.

So, if you got here through that kind of search, welcome. You’re in good company.

I’ve been thinking a lot about this, lately — why and how does concussion/tbi affect your intelligence, your mood, your state of mind? Well, obviously, when your brain starts to behave unpredictably, it can lead to all sorts of upset. And since the brain controls the body, and tbi can lead to pain, insomnia, balance issues, etc., that can lead to depression. Because you can get so intent on just keeping things “normal” that you run up a huge adrenaline tab, and you end up really wearing yourself out — which can cause your mood to plummet into the basement, as well as affect the quality of your thinking and make you really feel/act stupid.

Most people I know think that depression is a psychological condition. But I really feel it’s much more physical than a lot of people will admit. Of course, with all the psychologists making their living off treating depression, the idea that exercise and regular rest and decent physical fitness (not to mention a bit more stamina) will resolve a ton of problems, isn’t going to be very popular or widely publicized. But I’ll repeat what I’ve heard someone else say (can’t find the quote to attribute right now) that a brisk walk will solve more problems than many hours in a psychologist’s office. And with all the research being done about the connections between exercise and cognitive/behavioral performance, there’s more and more science to back it up.

Personally, I know that after my own TBI in 2004, I became incredibly stupid and deeply depressed. I was hell to live with. I lost my job. I almost lost my marriage. I lost my self-respect. I lost most of the things I used to love, including being able to sit down and just read a book, memorize information, and recall it when I needed it. The rage and behavioral issues have abated considerably since then — and they really started to improve when I started exercising regularly, first thing in the morning.

I’ve gotten a lot more intelligent and sane since then — in large part because I started really taking better care of my physical fitness. It works. If you haven’t tried it, give it a shot. And keep at it. It’s worth the effort.

Anyway, I’ve got to get going. I slept in a little today — well, more like laid in bed for a few extra hours — and I have some things I’ve got to get done. I picked a doozie of a topic to blog about quickly, but I had to say something. More on that later.

Gotta run…

Pain can make you crazy

The weather is changing. After weeks and weeks of hot, dry weather, suddenly it is cold and rainy. And my body can tell the difference. I’m considerably more tender and tight than I have been, and it’s having an effect on my frame of mind.

First, being in pain makes me less likely to move. Much as I may tell myself to ignore the pain and “work through it,” my body is still wired to know what’s good for it — and instinctively avoid pain-producing situations. That’s just how our bodies work — they “know” that our minds tend to override them and force them into situations which can be physically damaging, so they do their self-defensive thing and just avoid the kinds of movements that produce pain.

Being less likely to move makes me tighter than usual. My muscles feel shorter and smaller, and I feel cramped. When I stretch them, it feels really good — like I’m freeing up a bunch of energy that’s been trapped in them. But I have to consciously remember to stretch. My body isn’t inclined to move on its own, when I’m feeling pain.

Being tighter than usual makes me crankier than usual. This is not fun for anyone. I have a lower threshold of tolerance for foolishness (or what seems like foolishness to me), and I tend to snap at people over whatever. I also grouse and grumble, which makes people at work wonder if I’m okay.

Being crankier than usual makes me feel like crap about myself. I don’t feel 100% and I start to wonder if there’s something wrong with me. I don’t feel like I have command of my own life, my own mind, my own body, my own moods, and that sense of helplessness eats away at my self-esteem and self-confidence. And I start to do things that will make me feel better about my life — like eating junk food and staying up late watching crap on t.v.

When I feel like crap about myself, I start to question my sanity. My sleeping schedule may be way off, my daily habits may be unhealthy, and my overall sense of who I am and how I’m doing may be at total odds with what I want them to be. I wonder if I’m losing my mind – I’ve worked so hard to get to this place, I’ve worked so hard to build myself back up, and yet here I am, feeling like a screw-up and feeling damaged and feeling like I’ll never get ahead.

It makes me crazy. And it starts with the pain.

See, here’s the thing about the body-mind connection… I firmly believe that much of our state of mind is tied in with our feelings about our bodies — if we’re feeling healthy, if we’re feeling strong enough to live our lives… indeed, if we are strong enough to live our lives. Pain contributes to reduced range of motion, fatigue, emotional exhaustion, and a dramatically decreased quality of life, and that craziness starts in the body.

…Which can also be tied into the mind… because if your mind is untamed and running wild all over creation, then it can run you ragged (through stress-seeking behavior and situations) and eventually dissolve the rug out from under you with stress and fatigue and over-exertion. I won’t say “pull the rug out” because the process is much more gradual, insidious, and (while preventable) uncannily predictable.

It’s a constant feedback loop that spells trouble.

Now, before I make myself crazy, I must get on with my day.