The useful discipline of simple things

What holds you back can teach you a lot

What holds you back can teach you a lot

The last five weeks have been a whirlwind tour.

It’s taking a lot out of me, as you may be able to tell from the slow-down in postings on this blog.

I just don’t have the energy I had in the past – not yet, anyway. And I need to find a new cadence to work by. I’ve been very sensitive to perceptions about my performance – especially when I arrive and when I leave for the day. It’s a small thing, I know, but it makes an impression.

Fortunately, my new boss does not micro-manage how I use my time. So long as the results are good… that’s what matters.

I can’t let myself get too tied up in sticking to a timetable. Yes, I do need to show up at work “on time”. But that can range anywhere from 7:30 a.m. to 9:15 am.

In any case, today’s a light day, as most folks are disappearing from the office around 1:00. For me, that’s like Christmas, because it means everyone will be gone, and I will have some uninterrupted time to focus and really concentrate on my work. My boss encouraged me to work from home, but I actually prefer to work at the office. I have two computer monitors at work, and I have all the water and light I can ask for. There’s nobody asking me to do anything that they can actually do themselves. And I can be in my own world.

That’s good.

Moving into this new job, I have been forced to make some significant choices. I can no longer spend hours and hours on my other creative projects. I have to pick and choose. I just don’t have the time or the energy to follow up on everything I used to work on. Whatever I do, I have to make it count – like living a haiku life.

I have constraints — not as much time, not as much energy, not as much inspiration, but lots of constraints. It’s probably a little like living in Japan — all those very busy people doing very BIG things on relatively small islands with limited resources. It forces you to make choices. And the results are not necessarily worse.

It’s all about economy, now. Focus. Getting things done in a very brief amount of useable time.

This is useful discipline. It pushes me to do more with less, which is a very good thing. No more excess and largesse… no more taking things for granted. Do one thing at a time, and do that thing to the absolute best of my ability.

And rest.

Get plenty of rest.

And move.

Get plenty of movement.

I think in TBI recovery — or really any recovery where you have less after the incident, than before — this is a useful mindset to cultivate. Going easy. Keeping focus. Holding to a simple pattern, and getting as much out of that as humanly possible. It teaches you much.

And that’s good.

Simple is good

simplicityGet up and have breakfast.

Drive to work.

Work.

Eat good food. Drink plenty of water.

Notice the little details about life, and appreciate it all for what it is.

Do the best work I can.

Drive home.

Make a healthy dinner and enjoy it along with my spouse.

Watch a little t.v. or read.

Go to bed at a decent hour.

And simply rest.

Up early, time to breathe.

This isn’t exactly what I’ve got at work… but my own space isn’t bad at all

I woke up early today and have had some time to catch up with myself. I gave a friend some feedback on their resume (which someone had prepared for them — and very badly, too). I hope it helps – they are not in a good position at work, and they haven’t been challenged for quite some time. They need to make a move, but they can’t do it with a resume like the one they got from the “consultant” they hired.

Augh! Frustrating!

Anyway, I’ve had an hour and a half to just take care of some things, which feels good. I had hoped to start Monday out on a steady note, but my plans got hijacked. Yesterday turned into a whirlwind tour. I had no meetings till 9:30, but I had to run some errands before work, and I barely made it to my meeting on time. And my cube move got all mixed up. I was supposed to have everything in place by 8:30 yesterday, but the facilities folks didn’t even have me on their schedule – until they checked again, which I asked them to do. It took till early afternoon, and then I had to retrieve some extra cables from my old space, because the person who just moved out, took theirs with them.

By the end of the day, everything was settled, and that’s fine.

So yes. I got my new cubicle at work – it has a window, and it’s in a quiet spot. I feel like I hit the jackpot. Now I can set up my workspace as a little sanctuary at the office. In the past, I have not valued my workspace enough, and I just used it as a “holding pen” for my stuff.

Now I see things quite differently, because it is, after all, where I spend most of my waking hours. And I’m starting out on the right foot, putting a lot of thought into the space and how I want it to be. How I want it to feel.

I’ve got some plants I had at my other job(s), and I’m going to get more. It needs some life and light. I’m also going to get some pictures I used to have up. I’ve already got a cool laptop wallpaper of a place I’ve traveled to before, so that’s good. I need a side chair. Maybe I can order one.

I know it’s not forever, and I may be moving at some point on down the line, but for now, I want the space to really be somewhere I want to be, each day.

The great thing is, I’ve had time to think about it, today. I didn’t go to the chiropractor yesterday after work. I just went for a swim. It’s so much better. When I see the chiro – or acupuncturist or massage therapist or even my neuropsych – I feel a bit off-balance for a day or two afterwards. It’s helpful at times, but other times I just need to take a break from all the WORK.

I’m going to back off on my appointments each week. I think I need to discontinue with the chiro, because it’s so time-consuming and the benefit doesn’t offset the cost the way it used to.

It’s just so nice to… relax…

 

#10 Thing I wish they’d told me after my concussion(s)

10. Plenty of other people have had mild traumatic brain injuries (concussions), and most of them are getting on with their lives.

It's not the end. It may feel like it, but it's not

It’s not the end. It may feel like it, but it’s not

Brain injury / concussion is extremely common – millions of people in the US experience once each year, and many more experience them globally.

Getting clunked on the head is something as old as the hills. If it were catastrophic every single time, the human race would not have survived. So take courage – you’re in good company.

While brain injury recovery can be time-consuming and there are no hard-and-fast guarantees, rest assured that many people have bounced back after concussion and gone on to live productive, satisfying, fulfilling lives. Those who haven’t had such an easy time are in the minority. And while I am a member of that minority, I can tell you that even the long, hard road has had many blessings along the way.

You may notice some changes in your personality and abilities, but some of the changes may be for the better. I know that in my case, overcoming all the difficulties of symptoms and blocks that were put in my way trained me to persevere and be diligent – and also to pay attention to important signals that I was screwing up again and needed to make a course correction.

Nobody wants to injure their brain. But when it happens, there’s a lot of useful lessons to be learned. And those who learn and adapt, are the ones with the highest success rate.

You can be one of the successes. No doubt about it!

What to do?

Be patient.

Pay attention.

Be the best person you can.

Put forth your best effort and learn from all your mistakes.

And remember: This is not the end.

#9 Thing I wish they’d told me after my concussion(s)

9. You may feel like this for a while.

It feels like no one understands... and heck if you can describe it to them

It feels like no one understands… and heck if you can describe it to them

Yep, it’s unpleasant. Yep, it can suck. And yep, it can take a while to get all figured out.

It’s practically impossible to explain to others what it feels like to have post-concussive symptoms, and it can be almost as impossible to convince other people that concussion / TBI is a thing. Heck, I have long-time friends and family who still refuse to believe I have any issues – and I’m not the only TBI survivor who has that experience.

Never mind that. Just take care of yourself and pay attention to your own recovery.

And don’t lose hope. I had just about given up of ever feeling normal again, when suddenly I felt like my old self again.

It brought me to tears.

It was amazing.

And it comes and goes.

The thing to remember is that, through the course of life, we never ever stay the same person. We are constantly changing, constantly growing, and expecting ourselves to stay the way we were “before” isn’t realistic.

It was never going to happen, anyway. Even if you hadn’t gotten injured, life would have changed you in some way. You would have lost or gained many, many things (and people) along the way, and those experiences would have changed you, too.

Just be aware, that brain injury / concussion isn’t the kind of thing you can rush. The brain will take its own sweet time.

So, buckle up for the ride of your life!

What to do?

The best thing you can do is be patient with yourself and be aware of the ways that you are not functioning as well as you would like. Make a note. Try again. And keep learning.

Don’t rush it. These things take time. Eat healthy food, stay away from a lot of junk food, sugar, caffeine, and stress, drink plenty of water, and get lots of good sleep.

Exercise can also help a great deal. It reduces stress, and it gets your mind off your brain for a while. The times I’ve felt best, are the times I’ve been exercising regularly – even light exercise for 10 minutes at the start of each day. Just don’t overdo it. Recovering from an injured brain is hassle enough, without adding an injured body to it.

#8 Thing I wish they’d told me after my concussion(s)

8. You might feel like you are crazy… like you’re losing your mind.

crazy-anger-794697_1280

Auuuuggghhhh!

This is another very common complaint after concussion / TBI. Your brain is working differently than before. Maybe you’re saying and doing things that don’t make sense to you – and others around you. Maybe you can’t find the right words. Maybe your body is super-sensitive to every little stimulus. And you certainly don’t feel like your old self.

Believe me, this is common. Thousands upon thousands of people with concussion / TBI feel like they’re losing their minds. Some feel that way longer than others, but for the vast majority, they get back to feeling normal before too long.

That’s how it was for me for many years. I’d get hit on the head, be dazed and confused for some time… then eventually I’d be back to feeling like myself. This last time, it took me 10 years to start feeling like myself again. But at least I’m back. For the most part.

Some days, I still feel like a stranger. And I don’t know what happened to the old me I used to know so well.

Yes, it can make you feel crazy.

But you’re not crazy. Your brain is just “recalibrating” and figuring out how to do the things it used to do so easily.

It’s not a small thing, however. This complicates life in so many ways – including your interactions with others. One way it is particularly troublesome, is with doctors. If you have trouble expressing yourself and words aren’t coming out properly, it can be hard, if not impossible, to get good medical help. In my case, I was so “all over the map” that one neurologist after another treated me like I was mentally ill and just looking for attention and pills. Needless to say, it made it hard to get help. But I stuck with it, and my persistence paid off.

Unfortunately, not everyone is as fortunate as I have been.

The important thing to remember – no matter what doctors or friends or family members say – is that the source of your troubles is your brain. It’s not something you’re making up. It’s real. And you need to reckon with it.

Remember that neighborhood I talked about earlier? The one that got hit with the microburst?

storm-damage-tree-downThink about all the wiring in that neighborhood immediately after the storm. At first it’s down, then it comes up, little by little. Eventually people can turn on their lights without a brownout. And they can watch t.v., although it takes a while for them to get their heads on straight, after working around the clock to clean up their street.

That’s what’s going on in your system. You’ve got the t.v. on, but you keep hitting the wrong buttons on the remote, and the shows keep jumping around on your mental screen. It’s just the recalibration process running its course, and until things get sorted, you’re going to feel a little crazy.

But you’re not going nuts. It just feels that way.

What to do?

Be patient with yourself. Your brain needs time to figure things out again.

Have a sense of humor. Seriously – some of the stuff you do is pretty funny, if you think about it. If your system is going to go haywire for a while, you might as well have fun with it. It’s not the end of the world. Plus, you’ll have a hell of a story to tell, on down the line.

They say it’s the brain, but it’s also the body

It's ALL connected

It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

  • Fatigue – bone-crushing, spirit-sapping exhaustion;
  • Problems keeping my balance, which messed with my moods.
  • Heart rate increase – or decrease, as well as blood pressure changes.
  • Light and noise sensitivity.
  • Headaches
  • Body aches
  • Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
  • Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

#7 Thing I wish they’d told me after my concussion(s)

7. Being tired makes you cranky. It also can make you more emotional than usual.

Cranky after concussion? You're not the only one

Cranky after concussion? You’re not the only one

You may find yourself behaving in “strange” ways, or thinking “strange” things. You may also find yourself getting much angrier than before — and much more quickly than before.

A tired brain isn’t just a distractable brain – it’s an irritable brain, as well. Fatigue can cause an injured brain to overreact – to everything. It can give you a hair-trigger temper and make you unpredictable and volatile.

That’s not good for anyone.

I wish I’d known this from the start. It would have saved me so many years of real pain over watching myself blow up over nothing at times becoming a danger to myself and the people around me.

I blew up with family, friends, co-workers, bosses, healthcare professionals, and yes, police officers. I lost jobs and relationships because of this.

It was so debilitating to watch myself go ballistic over things like dropping a spoon on the kitchen floor, or not being able to understand what people were saying to me. If I had known what fatigue does to my brain – because of my injuries – I would have worried less about being a bad person, and worried more about getting to bed at a decent hour.

What to do?

Pay attention to how tired you are. And pay attention to when you have a bad day – or a bad incident. Notice any connection?

Earlier tends to be better for a lot of us

Earlier tends to be better for a lot of us

To combat this problem, you can schedule important things for the morning, when you are still fresh. And you can postpone (or avoid) doing social things when you are tired.

Important activities where you need to keep your cool need to happen when you’re not fatigued. And that means doing important things earlier in the week, too.

By Friday, no matter how early it is in the morning, you may still be tired enough to fly off the handle over nothing at all.

There are medications that can help with the exhaustion that comes with TBI. Some meds will help you think better, so you get less tired, period.

If you want to go “med-less” (that’s what I prefer), you can always have a cup of coffee before an important event. But you have to watch out that it’s not too late in the day, or it may keep you from getting to sleep. A cup of coffee at 3:45 p.m. may help for that Thursday-afternoon meeting, but it may put the screws to your Friday.

#6 Thing I wish they’d told me after my concussion(s)

6. All of this is going to make you feel very, very tired.

TBI / concussion can make you feel wiped out.

TBI / concussion symptoms can drain you.

The sleep thing again…

I’m repeating myself, because it’s that important.

Fatigue is one of the top complaints of people who have sustained a brain injury. For some, it resolves in a matter of weeks or months, for others (myself included), it goes on for years. Giving yourself a chance to heal up front is probably a good idea.

TBI / concussion can make you feel wiped out.

When your brain is going haywire and it’s sending strange messages to your body, and your body is hyper-sensitive to just about everything… it’s exhausting. I spent years in a near-constant state of exhaustion. I had maybe a few good hours in the morning, then I was done.

Especially at the start, when your brain is figuring everything out – it feels like for the first time – you can end up feeling fried before you get half-way through the day. I drank way too much coffee for years, just to keep going. I didn’t understand what the problem was. I just knew I was exhausted, and I had to keep going.

You may need to sleep more than usual. If you can get it – take the opportunity. I functioned for years on exhaustion, because I had no choice. I had no access to public benefits, and if I didn’t work, I didn’t eat or have a home. So, I worked. Through the exhaustion. It was no fun at all – for me, or for my loved ones. We all paid a steep price for my fatigue.

What to do?

Sleep is precious. It helps your brain clear out the gunk that gets released when it gets injured, and it restores your sanity. Get as much sleep as you can, whenever you can.

You may feel like a loser for needing so much sleep, and/or others might call you a “slacker”, but they don’t live with your brain. You do. Give it a break. Give yourself a chance to feel human again.

no-x-outAlso, consider cutting back on all the stuff you think you need to do.

A lot of us stay busy, just because everyone else does it, or it makes us feel more productive and needed. In the end, you might be productive and needed, but you still feel like death-warmed-over. It’s up to you, but I’ve found that cutting back on all my customary activities was a magical relief.

All the “friends” I used to have? They’re still running on their hamster wheels. And they’re no happier now, than when I departed from their midst.

Getting back the calm – regardless

Photo credit: Myshelle Congeries

Photo credit: Myshelle Congeries

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.

fukitolI 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.

For now… off I go.

Onward!