This is how I know I need to slow down and take better care of myself

snow covered buildings

Like many places across the country, we had snow, this past weekend.

I went outside. I shoveled. I scraped. I roof raked. I waded around in the snow, taking care of business.

Then I went back inside.

I’ve been tired, and I can tell I’m over-tired, when I don’t want to go outside. Or I avoid it. Or I go outside at night, instead of during the day. I’ve been so caught up in the job situation and dealing with deadlines, that I didn’t realize just how worn out I was.

But when I avoid going out into the snow… I know something is wrong.

I love the snow. I love the cold. I feel best, when it is below freezing. I don’t feel cold when it’s the coldest. My internal thermostat kicks on, and I feel warm.

But not when I’m worn out. When I’m overtired, I get more sensitive to light — so going out into the bright snowy day isn’t any fun. I also get less coordinated — so, walking across slippery ground is very dangerous for me. I can’t afford to fall, so I avoid going outside. If this happens when we just got six inches of beautiful fluffy stuff, I know there’s something wrong.

So, I have to take better care of myself. Give myself more time to do things. Take more time to sleep. Relax. Put down the smartphone. Just relax.

I haven’t been doing enough of that, lately.

But I can start now.

Because we got our Christmas decorations up. I put up the tree and we hung our ornaments last night. The boxes of unused decorations are back down in the basement where they belong (some years, I don’t take them downstairs for weeks, even months, so this is progress). The driveway is cleared, and my schedule at work is going to be pretty mellow for the next couple of weeks. I only have seven more work days before my break, and I’m stoked.

Completely stoked.

Woot.

I just need to take care of myself during my time off, give myself a break, catch up with myself.

And take some time to enjoy the beautiful snow.

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Just a few weeks left…

… in 2017. It’s been quite a year. Very, very busy. Too busy for my liking, but that’s been out of my control, for the most part.

I am getting more leads on other employment opportunities, and I’m doing a better job of not getting emotionally invested in a certain company or a certain position. No matter how transparent companies are, there is always additional info the interviewers leave out.

So, I have to make up my mind based on actual objective facts — length of commute, salary, stability of the company, vacation time, insurance and benefits. The rest of the people stuff and roles and responsibilities is “ephemera”. That gets worked out in the process of just doing the job.

This is one of my favorite months of all time. I have time off — leftover vacation time I need to use up, as well as a week off between Christmas and New Years — which will let me catch up on a bunch of stuff I need to wrap up before the end of the year. The weather is getting colder, too, which is great. I don’t do well with the heat, as I get older. And I sleep better when it’s cold.

I’m also getting a lot of things done at work — at the job I’m hoping to leave. It’s a roller coaster. Every day, it’s either really great, or it sucks beyond belief. One day, I can’t wait to get out of there, the next, I could stay forever. If I find a situation that’s vastly superior to where I am now, I’ll go for it.  But I’m not under a ton of pressure to go. That’s more a personal preference.

In the meantime, I’m plugging away at my work. Just keeping going. Talking to recruiters, doing my own projects, and keeping my head down, overall.

I’ve got time to relax and think things through… or just sleep.

I might just do that.

What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

Pacing myself for a good Thanksgiving Day

holiday dinnerThe bread crumbs are drying out, and the turkey is thawing in its cold water bath.

I have all my vegetables — yams, red potatoes, carrots, mushrooms, celery, green beans — and a can of jellied cranberry sauce picked out and stashed in the refrigerator

I have a tube of ready-made croissants also chilling near the butter that’s a main ingredient for the stuffing.

It’s  Thanksgiving morning, and I have my work cut out for me. I’ll start prepping in about an hour… melting the butter and sauteeing the celery with herbs for the stuffing… rinsing out the turkey and making sure it’s fully thawed… getting the giblets out and tossing them in a pot of salty water to simmer… cutting up the vegetables to roast with the turkey and in a separate dish on the side… stirring in the bread cubes… and then putting it all together to sit in the oven for 4 hours.

The fact that I can think all this through and have a good sense of the “flow” of things is testament to my TBI recovery. Years ago, I couldn’t even figure out how to reliably cook a full meal, let alone an entire Thanksgiving Day feast. It’s taken years of practice to not only get my pacing together, but also not lose my cool over things going wrong.

This year, I planned ahead. I prepped and did shopping several days in advance. I thought it all through, over and over, made my lists, and got myself set up to just relax yesterday before doing all of this today. I also have a roasting pan for the turkey, which I didn’t have last year. Last year, I completely spaced out on getting a foil roasting pan, and I spent Thanksgiving morning in search of a grocery store that had them. I was unsuccessful, but I did figure out that I could use one of my really big casserole dishes as a backup.

Then, after that potential disaster was averted, I just bought myself a roasting pan. Problem solved for posterity.

And it’s good. This year is good. I’m still really fatigued from the last few weeks of work, and I’m having trouble sleeping (and napping), but I’m in a good space. And that’s what matters. Because I can’t always control how I’m feeling (or how I’m sleeping), so the next best thing is to keep my cool and just deal with whatever comes along. Without drama. Without undue pain and suffering.

It’s all any of us can ask for, I think.

So, on this day of giving thanks, I am grateful. If you’re celebrating today, have a very Happy Thanksgiving. And if you’re not, I still wish you a most excellent day.

And it just gets better…

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’m having another great day, today.

I’m surprisingly productive on my days “off”, and I’m getting more done than I realize. Before I lay down for my nap, a couple of hours ago, I made a list of all the stuff I got done, and it was … a lot.

I’m not taxed, though, which is good. It just feels regular. Like I’m just living my life like I want to.

And I am.

One thing that happened earlier, was a phone interview for a job I’d applied for a couple of weeks back. I know I’d posted about how I really need to be realistic and not push myself intensely — especially with a long commute.  And it’s true. The thing is, the people I talked to and the job we discussed all sounded great. Of course they did. It was an interview, and everybody’s on their best behavior. But what came out of the conversation was actually a wider and more interesting kind of opportunity than they originally offered.

The scope of the job now encompasses things I’ve been doing for years, but they don’t apparently have anyone to do. Things like make their website go really, really fast. Things like put a new web metrics package in place. Things like train developers on best practices.

So, that was actually exciting. When I think about where I am now — boxed into a small corner of the world, without the opportunity to strengthen certain skills (which, by the way, are the ones that really pay well) — and I think about the future — more of the same that’s going to make me more and more specialized, more and more boxed-in — I have to seriously consider any and all alternatives.

Anyway, if my current employer really wanted to keep me, they’d pay me like they mean it. They haven’t done that. If anything, they’ve reneged on their promises and shorted me thousands of dollars.

That’s not cool. It’s not-cool enough to make me leave. They should know better. They do know better. But they won’t do better.

If I move, it will be an adjustment. A longer commute. A new bunch of people. Unpredictable politics. Having to start from scratch.

Then again, that’s what I’m dealing with right now. And that’s happening at an established job with a company that’s an “unknown quantity” at this point. Who knows what will happen with them? Nobody knows. All anybody has, anymore, is rumors.

Note how well I’m talking myself into changing jobs, when just a few days ago, I was in a much different frame of mind. I’m clever that way… But seriously, I have to weigh all the pros and cons of both situations. And I can’t say I’d mind being closer to home, especially during the winter months. I also won’t mind not being “threatened” with obligatory trips to India, which has never been something I wanted to do, but my boss has been hinting at. I can work effectively with people from India. I just can’t travel there comfortably. Just crossing the USA is disruptive enough for me, and exhausts me sufficiently to wreck my life for weeks at a time. But India?

No thank you.

Well, it’s all a trade-off. I’m fortunate that I’m in this situation, to begin with — in-demand in the midst of a very challenging job market. These are good problems to have. So, for that I’m grateful.

I think I’ll drink my afternoon coffee now.

And get back to enjoying my day. The obligations I thought I’d have this afternoon have magically dissipated into the ethers, so I have time to read and write and think — imagine that. And I’m OFF for the next four days, with just a few to-do items here and there.

Good heavens, it’s great to not have to do anything.

For once.

Regaining my Dignity at the end of “Most Excellent Day One”

zen stones in waterI just woke up from my nap. I lay down for 2 hours, and I could have slept for three or more.

It felt amazing. I need to make supper, now. Get back on track. But I feel so amazing, after just a little bit of sleep.

And I know there will be more where that came from.

Because I have the next week off. Actually, a week and a day. It’s amazing. Fantastic. Just what I needed.

And now I can regain my dignity.

See, it suffered for many months, while I was working on this Mammoth Project. I’ve been over-worked, (of course) under-paid, I have been doing the job of 5-6 people, and I haven’t gotten a lot of support from my boss throughout. Just criticism from afar. Or meddling from afar. Or what seemed like outright sabotage. I’m not sure what’s in it for them, to make me look like I don’t know what I’m doing, or to override me, but bottom line, they did more harm than good.

Anyway, the first phase of the project is over, and now I can look towards the next phase — about two months off — and leverage the foundation I’ve built with people, thus far.

And start living and acting like myself again.

Catch up on my sleep — and stop making mistakes because my brain is mis-firing.

Chill out my stress levels — and stop getting overwrought and yelling at people.

Find the good in what I’ve accomplished — and stop feeling so self-conscious and insufficient, because some things didn’t go 100% according to plan.

I can actually hold my head up again, after nearly a year of feeling trampled by other people’s successes. I can actually get my bearings again and stand firmly on both feet. And I can get past the dismay at my brain failing me, time and time again, under conditions that seem custom-made to trip it up.

I can get my dignity back to where I’d like it to be.

And that started today, on this Most Excellent Day One (of 9), as I got to not worry about The Project for a whole 24 hours.

I’m looking forward to the next 8 days.

That’s the understatement of the year.

Now, I can sleep

Christmas wrapping
The final push is on…

I’m giving myself an early Christmas present. I’m not going to make the Big Trip to see my extended family for Thanksgiving. I’ve been working long hours for weeks and weeks (months, really), and I feel like I’m on the verge of getting really sick.

My spouse isn’t all that keen on spending all that time in the car, either. And during the most heavily traveled time of the year.

It just doesn’t make sense for us.

Yes, it will be unfortunate that we can’t see our families.

But it’s a massive relief that we’re not making the trip. It’s exhausting in every sense of the word — to the point where it’s not really safe to be doing it. Traffic. Potential for accidents. Family frustrations. All of it is just too much to handle, right now.

What I really need is sleep. Like, an extra 100 hours, to make up for all the lost hours of the past weeks and months. I need to retrain my system to level out, to calm down… to get out of the sympathetic bias that’s just torn the living crap out of me. I’m shaky… nauseous… dizzy… unsteady on my feet… Yeah, I’m in no shape to do much of anything for a week.

And that’s what’s going to happen — not much of anything.

I have off work all next week and the following Monday. I don’t have to go back till Tuesday the 28th.

I won’t have to set an alarm. I won’t need to keep my phone by my bed. I can just lie down and sleep, without worrying about being late for things, or forgetting things, or saying stupid things, or messing things up. I can just be. And recover.

And that is a beautiful thing.

Onward… back to bed.

Today’s a new day

railroad tracks leading into the distance with "start" painted on a tieIt’s Friday. For many, that means a few days off.

For me, it means I have a few days ahead of me to put in some more work. Some thought. Some intention.

It’s precious, precious time to step back, reconsider what I’ve been doing for the past week, re-set my direction, if necessary, and also rest, recuperate, re-adjust myself to a life that’s more like “me” and less like how the rest of the world expects me to be.

My TBI recovery has taken me in so many different directions, but at the core, it’s reminded me of who I really am, deep down inside, and what I want from my life. I was frankly on a wrong path, back when I fell down those stairs in 2004, and although it cost me dearly, I’m now on a much better path.

My path.

My life.

Today is my day.

Onward.

Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.

Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.

I honestly don’t understand why more emphasis isn’t placed on the experience of brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.

Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.

Here’s a quick summary of the different types of brain injury:

Acquired Brain Injury (ABI)

includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.

Concussion Resources:

 

I blame the space weather

Coronal Mass Ejection
Coronal Mass Ejection

I just checked online, and apparently we’re having pretty intense “space weather”. Coronal mass ejections (CMEs) that are pretty intense.  According to spaceweather.com,

Sunspot AR2671 has developed a ‘delta-class’ magnetic field that harbors energy for X-class solar flares. Credit: SDO/HMI

Awesome. Just what I need.

Solar flares, CMEs, and geomagnetic storms can affect radio transmissions and have also been tied to migraines and cluster headaches. It’s hard to prove, but if you consider that we’re very “magnetic”, ourselves — our nerves transmit their information as electricity (and lots of chemicals), so if electricity is affected in general, chances are, we’re also going to be affected.

Well, whatever. I’m just getting through the week, trying to be smart about things. Keeping myself on a schedule and focusing on the things I can control, versus… everything else.

Onward.