It Gets Easier

The queen must die. Her loyal subjects will be given to a rival kingdom where they will work themselves to death. That is the best path, the right path, this time.

No, this isn’t the outline of a new fantasy novel. I’m talking about my bees.

One colony is much smaller than the others. My mentor came by a few weeks ago and confirmed – they won’t make it through the winter. They don’t have enough workers, they don’t have enough drawn comb, they don’t have any honey stored away. So. One must be sacrificed for the good of the many. Kill the queen, put her workers with one of my other bee colonies, spread the comb between the remaining two hives so the bees can fill them up with honey. Done.

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And then there were two. Without the queen, the Gold Stars (purple) are easy to join with the Italians (green).

I have loved this queen from the beginning, the Gold Star queen. She was the first queen bee I every saw leave the hive for her mating flight. So healthy and well formed, mahogany and brown, she left the hive as workers excitedly ran about the entrance, wishing her well.

But she failed before she began. The break in broodrearing needed to grow a new queen – a month or so – put the hive behind. Regardless of how amazing a queen she could have been, there was no time to catch up in Vermont’s short summer. Large numbers of bees are needed to draw comb, gather pollen, and store enough honey for the colony to make it through 6+ months of winter. And she just didn’t have time to produce enough bees, so she had to die.

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Gold Star queen is beautiful – but much smaller – in death.

The first time killing is always the hardest for me. That stepping over the boundary from where I am someone who does not kill that being, to someone who does. It is difficult, emotional. A lot more emotional than it would have been pre-injury, a lot more difficult. I don’t have that helpful distance from life anymore, both an energetic buffer and the emotional muting that make the unpleasant actions of daily life easier to navigate. When I kill, I feel. Sometimes I feel so much I can’t feel it then, and it is only days later, far from the fated moment, where I can allow myself to let my emotions flow again.

When I first used Round Up (ever) this spring to help control invasive bishops weed in the perennial flower beds, I cried. It felt deeply wrong that I had the power to so casually destroy something living. Death isn’t quick, not like pulling up the plants. Rather, it is a chemical action that causes the leaves to wither and the plant to die, starved from being unable to produce certain amino acids. Not pleasant for a small vegetative being. I cried after the second and third applications, too, although less. By the fourth time, it was just a tool I was using to bring about an important goal. I no longer thought or registered the deeper experience of what I was doing. It was routine, it was normal.

Next time, killing the queen will be easier. With repetition, anything can become easier, feel more natural. That is one of the great things about humans, our deep adaptability.

Even this limited life recovering from two mTBIs can feel normal, be normal. I certainly fought against that truth viciously, tooth and nail, with all my heart, for as long as I could. I wanted it to be different, so dammit it was going to be different! But, unfortunately, some things won’t bend to a strong will, and brain injury is one of those things.

The limitations I live with casually now were once painful, difficult. They were worth tears and anger and yelling and hopelessness. They were worth cursing and shaking my fist at the sky. With enough time, though, enough repetitions, something changed. Or, correction, I changed. Something had to give, and since my body and mind couldn’t possibly do more than it already was, I had to. My expectations, my beliefs, my hopes and dreams. They all had to give way to make room for the new reality of my life.

And so now when I have to cancel an appointment or social plans because I scheduled too much for the week, I just do. I have a twinge of irritation, a twinge of embarrassment, but that’s it. When I stutter and misspell easy words when I write, I just take a deep breath, calm myself, and push on. If I drive somewhere and find my head buzzing from over-stimulation, I just stare into space for 10 minutes until I can focus again. I don’t get angry, I don’t beat myself up for needing that time… I just take it.

It isn’t painful, anymore. It isn’t heart-wrenching. True, these impairments and the accommodations I need aren’t what I want – not by a long shot – by they are what is. I’ve adjusted. I’m use to it. It’s just another day not at the office. In truth, I’d much rather spend all that energy I once use to fight my life, to live it.

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Night Swimming

“Oh! The water is cold tonight!” Mary exclaims as she eases into the lake. The water feels cold to me, too, but no more than usual. Night swimming has it’s advantages – no boats, no other people – and it’s disadvantages, like no sun to heat up a swimmer in cold water. But, often during the week, the evening is the only time Mary and I can swim together because of our respective schedules.

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Beautiful moonlight on the water during an evening swim.

We have different techniques entering the water. Mary eases in until chest level, then dunks. I wade as quickly as possible to waist level, then dive in. I don’t like to be tormented by discomfort. I’d rather get it all taken care of as quickly as possible.

“I am so cold. I’m shivering!” Mary exclaims, like it is an unusual occurrence. She goes on to say “Maybe it’s because I’ve been constantly busy for the past two weeks. And I didn’t sleep well last night, plus today was particularly rough at work. I’m exhausted.”

Once we are both submerged, Mary commences calisthenics. Or, not really calisthenics, but rather exercises, trying to keep herself warm. She shivers uncontrollably and exclaims periodically about the cold. Her body isn’t able to regulate because of fatigue.

And then it is. Five minutes, ten minutes maybe, and she’s fine. Her body’s energy re-balances, her core systems compensate for the cold, and she can just relax and enjoy the rest of the swim. She switches to floating on her back, looking at the dark sky. I feel her energy calm as she enjoys the peace of the night.

Then, there is me. It’s different for me. While Mary’s body is able to compensate for the cold water in five or ten minutes even when she is exhausted, my body can’t handle it. At least, some of the time. Sometimes, it’s fine. Sometimes, like at the end of the day, or when I’m tired, it’s not.

Since my first mTBI, my body doesn’t seem able to regulate, to handle things like it once did. I have become sensitive to the heat, getting overheated and dull-headed quickly. I am more sensitive to the cold, breaking into uncontrollable shivering and misery after just a short time.

Every time we night swim, I run. I mean, I run underwater. Pumping my legs at a steady pace, swinging my arms forward and back in time with the leg motion. Constantly, continuously, I try to generate heat. I try to sustain, to draw out, my body’s ability to handle the cool water. These days, my energy is high enough that I start with the cold of the lake on just the surface of my skin. The cold dances along the edges of my body. If I’m lucky, it stays there as long as I want to be in the water. Sometimes, it doesn’t.

Repeatedly this summer, our joint swims have ended abruptly because I could no longer tolerate the cold. It goes something like this.

“I’m getting cold, I have to go in.” I say. Of course, I’m running in place as I usually do. Constant motion in a bid to stave off the cold. But I’m feeling my boundary, my skin, breaching. I feel the cold starting to curl into my body, instead of dancing along my surfaces. I want to stop before things go too far.

“Come on, just a little longer.” Splash Splash.

“Okay.” A few minutes pass. Those same tendrils reach deeper, twine into my core, threatening to send me into bone deep body chills.

“I’m cold, I have to go.” This time there is no negotiation. I must leave, immediately. And so I do.

Once I reach the shore, leave the water, and start to dry off, I’m fine. The danger has passed. The bone cold didn’t have a chance to hook into the core of my life energy, so all will be well. Swim time just has to end sooner than we wanted.

It took me a long time to realize this temperature sensitivity issue. I pushed it too far on so many occasions. I repeatedly have ended up either shivering uncontrollably and unable to get warm (if cold stimulus) or miserably dull-minded, confused, and unable to do anything as I lay supine on the couch (if heat/humidity stimulus). So, for those post-mTBI folks who haven’t considered this might be an issue – do. Process whether you are now  particularly susceptible to heat exhaustion or becoming chilled. It’ll save you some grief later on.. it would have for me, anyway.

Here’s my theory on why it happens. The body has only so much energy to spend, and that amount varies by day and health. After mTBI, the brain uses more than it’s fair share of energy, and overall body energy is decreased, too. Temperature change challenges the body’s ability to regulate, and sometime it just can’t cope. Cue chills or heat exhaustion.

So I wilt like an unwatered flower in the humidity and heat. And I freeze at a small drop in temperature. Even in the shower, if I turn the water too cool, I become dizzy and the edges of my vision grey. I’m in luck (?), though. Times change. Unpleasant heat and humidity only lasts for about two or three months in Vermont. I definitely don’t want to rush summer along, but I am looking forward to warm, sunny, moderate temperatures down the road.

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The No-Try Exercise Program

Roller derby made exercise a regular part of my life. I spent my childhood and young adulthood continually playing sports, but somewhere between high school and a full time job, I lost that normalcy of daily physical activity. College and graduate school both called for hours of sitting still, hours of reading and writing. There wasn’t time to join a sport. Plus, physical activity was culturally segregated in those places, and therefore unwelcoming. After graduate school, I started full time work in an office, working on a computer, like so many other people. Again, no push nor appreciation of sports, of regular physical exercise. My partner didn’t exercise regularly, and neither did I.

Then, when I was 33, roller derby made it’s way into my life. Two hours of exercise three times a week doing something fun and exciting quickly changed my focus, changed my priorities. Using my body aggressively, pushing my limits, made me again appreciate all this healthy animal could do. My tree trunk body structure and my generous booty became assets, instead of just being true. Once my body adjusted to the physical demands of derby, I added additional physical activity in the hopes of becoming more competitive. Weight lifting, running. Roller derby is the only thing that could have motivated me to run two miles – during my free time – without a bear or knife-wielding murder chasing me. Truly, the only thing.

My favorite type of exercise was interval training. It is a simple concept – do intense, maximum level activity for a short period of time, recover a short time, then do it again. Biologically, it makes big changes with short-term effort. Fifteen minutes was enough to make a difference. It might be unpleasant, but at least it was unpleasant for only a short period of time.

Then, life changed. My concussion in January 2014 significantly impaired my activity level. The PT I worked with shortly after my injury used my heart rate and blood pressure to set limits on my physical activity. Don’t do anything that raises your heart rate above 100 bpm (do you know how hard that is?). Then I graduated to 120 bpm. Eventually, I stopped seeing her, but my drive to exercise had not disappeared. I tried lifting weights, and gave myself horrible headaches as a result. I tried pushing myself with some interval training, causing a spike in symptoms that lasted for days. Hell, I even tried jogging again, but that made things worse too.

What I learned – slowly – from that negative feedback, and my time recovering from an mTBI, is that trying is exactly what I need not to do. Trying means pain. Trying means exhaustion. Trying means taking time and energy away from the rest of my life. It means recovery time. It means too much. It means all sorts of things I can’t afford to deal with, considering my limited energy budget.

So I don’t. Instead, I’ve changed how I look at exercise. I have changed my basic philosophy, my basic idea of what I do.

I was always taught that to improve, you had to push your limits. You have to lift more. You have to run more. You have to go faster, harder, longer, and that was the only real way to get better.

But, I can’t. I can’t do anything hard, fast, long. Hah. That is intrinsically exactly what I cannot do, living with chronic fatigue from an mTBI. My energy budget is 7 spoons, I can’t or, more specifically – I won’t – spend my whole day’s energy budget for 20 minutes of vigorous activity. At least not usually…

So what do I do instead? I developed the No-Try philosophy of exercising. If I am trying – the moment I try – I am doing too much. Instead, I do what exercise I can, without trying, and work up from there. Slowly. Carefully. Without trying.

Really.

I envision it as improving my physical ability by moving up my lowest performance level, instead of pushing my highest.

How does it work? It’s pretty easy, really. Choose your exercise. For me, that is walking because I can do it right out my front door and I don’t have to drive anyplace. For you, it might be swimming or biking or whatever. Choose your exercise. Something you’d like to do every day. And then do it.

But not too much of it. Do whatever you can do until you find that first moment when you try. That first internal push, that first tightening of the will to make it a bit farther. As soon as you notice yourself doing that, stop. Turn around, and mosey home. Slowly. Without trying.

There, you’ve done it. Congratulations, you’ve started your No-Try Exercise Program!

The next day, do it again. Again, notice when you start to try. If you start to try before you reach yesterday’s limit. Stop, turn around, and mosey home. Slowly. Without trying. That is your new limit.

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My daily baseline – an old sugar maple that had the misfortune of growing too near the power line.

You want to find that line, that place, that EVERY DAY, you can reach without trying. That is your starting place. And then you can slowly, slowly, improve from there.

Don’t listen to yourself about what you think you can do. Don’t let a good day make you go farther. This is about improving your abilities on your worst day – which in turn will improve your abilities on your every day.

So, go to your baseline limit for a week. Get the feel for that. Make sure you aren’t doing too much. Then, if it truly is always within your reach, take another 10 steps. Really. Just 10 steps. Or an extra pedal or two on the bicycle, or a very small bit more of whatever exercise you are doing. Then stop, turn around, and mosey home.

Make yourself stay at that new limit for another week. Really, it’s going to be harder than you think. Fight with yourself, you overachiever, and don’t go beyond that new limit. If it is too much one day, move back to your baseline. If it is too much twice, stay with your baseline again for 7 days before adding 10 steps.

This is not training for a marathon. This is not an efficient way to bulk your muscles. This won’t cause you to lose weight. However, this is a way to become more able, more physically able, in your life. This is a way to improve what you can do on your worst day. This is a way to keep exercise a part of your life, and to make yourself a bit healthier, regardless of how “good” or “bad” a day it is. In fact, on a bad day, being able to still do my daily exercise makes me feel fucking great. There is at least one thing I can do today!

So, back to our program. If, after a week, you handle that new line, add another 10 steps. Then do it again. When you are set back – cuz it always happens – from a bad night sleep, doing to much, whatever – then start at your baseline. And expand again.

You aren’t heading anywhere. You aren’t trying to accomplish anything. There is no finish line. What you are doing, the exercise you are doing, is good for your body. It also does not require effort, which means it does not take away from your basic ability to function each day.

Yes, I’d like to be more physically fit, but I am not willing to give up other parts of my life to make that happen. What!?! Isn’t physical fitness ultra important? Yes, it is. And. I don’t want exercise to take away energy from the rest of my life. Period. There just isn’t anything to spare. Part of me judges myself for that, but this mTBI has taught me I have to follow my truth, my own real priorities, rather than what I think I should want or do. Hell, I just don’t have the energy for that, either. Do you know what I do have the energy for? Walking every day. Using my No-Try Exercise Program.

Blessed be.

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Keeping It Easy

It seemed like a good idea at the time. Heck, it still is a good idea. Sign up to have my work reviewed by my writing group. Put my stuff out there, and start getting some feedback. That is how I came to submit my name for the August 21st meeting. Now, I just need to get together 20 pages of writing.

But wait, August 21st isn’t my real deadline. All writing must be submitted at least a week before the meeting, to give members the opportunity to properly read and review it. So my true deadline is August 14th… less than 3 weeks away.

I still don’t know what I’m going to submit. I have spent the last few weeks struggling to figure it out, but the answer has eluded me. I fear that I am getting close to my point of failure, that point where – once passed – success is no longer possible. I reach it much sooner than I use to when deadlines are involved. Pre-injury, an important deadline could be looming and there was a good chance I’d pull something brilliant out of my ass at the last minute and finish it on time. Not anymore. Progress in my world now is made small step by small step, an achingly slow crawl to the finish line. There is no last minute dash of inspiration combined with boundless energy and mental acuity that will make it all work. I mean, it could happen. I could win the lottery, too. But, I’m not going to relying on either of those things happening to make my life functional.

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Picture of a Black-Eyed Susan Mary and I grew from seed this year. Just cuz. Baby crab spider an unexpected bonus.

So, this deadline. And me, not making progress. My plan for joining the writing group has been to get help transforming my writing into finished products, articles I can submit to magazines or newsletters. I imagine a new way to share my message and insight with the world, an attainable step between blog posts and book. Given that goal, it seems only logical to me that when I submit, I will submit some of my stories already transformed, reworked, and recreated into new pieces of work.

But, how to do that? I know how to write a blog post with no boundaries, asking no questions except what is true for me, what is in my heart and mind. That is how I write, and that freedom and simplicity is how I’ve succeeded. My narrow focus, with no responsibility or consideration of anyone else, has made a safe space for me to create. It has also fit writing into my energy budget and my cognitive ability.

It is a big assumption, to assume I can switch gears and write in a different way. One that asks question, that considers others and sculpts what I have created to their needs. Who is the audience? What is the message? What makes my writing special? What is the tone of the piece? What is my style? On and on and on and on.

And so I continue to spin, wondering, thinking, trying to figure out what to do, looking for a hook that will ground me in my reality now. I know, eventually, I’ll get to the point where I can write in that way, thinking of others. That will be me growing as a writer, and I accept that challenge.

Yet small steps, small bits. That slow and steady crawl to something new. I feel overwhelmed. That means I am asking too much of myself. I am trying to accomplish something too big, too quickly, without enough supports or foundation. So. What is the next right step?

My friend Brie actually figured it out for me. She had a simple answer, and I’m going to follow her advice. Start small. Make the goal attainable. We spent some time looking through my blog stats.

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Amazing how useful stats can be…

We checked out which blog posts where the most popular, and which received the most comments. I’m going to choose five or six of those – whatever will equal 20 pages or less – and submit that writing for my group to review.

Why? They are an audience I haven’t reached yet, full of professors and published writers and others with a literary bent. I will share what I have done, what I have created, and find out how it is received. What engages? What conveyed something you wanted to know? What is interesting? How successful was I in sharing my experience? How should I expand on these articles? What is needed to make them whole and complete?

Once I listen to that discussion, and get that feedback, I will have much more concrete information about what I need to do. What my next steps are. Guidance along my path. And, when I submit again – in two or three months – I expect I will be ready to create those drafts I desire. With this first step, with this added time, it will, then, be possible.

 

 

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Scanning for Content

“So the first step of the strategy is “Preview”. That’s where you scan over the information you want to remember, and get an idea of what will be covered”. My new speech language pathologist points to the appropriate section in the instructions as she speaks.

I frown at her statement, uncertain. “When you say preview, what do you mean? What exactly do you want me to do? In truth, these days I mostly look at the pictures to find out what an article is about.”

“You’ll scan the information; just look through it briefly and get a general idea of the content.”

That’s when I realize the problem – something I have never put into words before, something that I haven’t even really been aware of until this moment. “I don’t scan through writing; I can’t scan anymore. It’s either a bunch of unreadable lines or I have to fully commit my attention and read it in detail.”

We talk on, but part of me stops there. Is that true? Is that really true? I can’t scan through writing anymore? Well, I don’t. I definitely don’t. I didn’t really realize it, but I don’t. No wonder letting any information in is so frikkin laborious. I have to commit all my attention to it. I can’t just casually scan through an article like I use to, deciding if it is worth my full attention. I have to commit. The reading switch is either on or off, there is no middle ground.

Did I do this to myself? Is this one of those moment when my compensatory strategy actually gets in the way of me functioning? I rigorously control what information I take in. I usually keep myself on a tight leash out in the world. I choose to see or not see. I choose to read or not read. I do this to avoid getting overwhelmed, which happens so easily now. I also do it to preserve my energy, my precious cognitive ability. But could I be undercutting another ability, that ability to scan, by my rigid on/off choices of processing information?

Later that night, I test myself. I challenge myself to scan through an article in the paper.

Damn. I sigh. It’s just letters before I choose to read it. I recognize it as writing, and individual letters, but not as individual words. And when I attempt to loosen my focus but not move to reading mode, it remains opaque and unknowable.

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Each letter is identifiable, but together they have no meaning until I choose to read with my full attention.

So I try for something less than reading, but more than scanning. My grade school teacher was very clear that the first sentence of every paragraph should summarize or highlight the main point of that paragraph. So how about I just read the first sentence of each paragraph?

And I do. And it goes like this. I find the first sentence of the article. Focus, open my mind, read it. I use the visual cue of the gap between the paragraphs to hook onto the first sentence of the second paragraph. While switching between the two paragraph, the words are a blur, unreadable. Then I focus, open my mind, commit my energy, and read the beginning of the second paragraph. After, I feel myself reigning my awareness back in, folding up my ability to read and switching to visual cue mode where I identify the beginning of the next paragraph. Focus, open, commit, read. And again, withdraw, close, switch modes to visual cue. Over and over again.

Weird. So Weird. And a hell of a lot of energy.

I know this is not how I use to do things, so rigidly, so regimented. This is definitely not scanning for content nor major themes. This is truncated reading, and not very pleasant. And – minor complaint here – the first sentence of these paragraphs do not convey the heart of the article, I expect. Or the article is so disjointed it makes no sense.

It is amazing, on some level, that I have gone 4 ½ years and not realized my ability to scan through writing has been missing. I suppose it is another one of those basic and fundamental skills that is so ingrained since childhood we aren’t even aware when we use them. It does makes sense of some of the struggles I have had since my first mTBI.

I use to love filling out forms. Now, hate forms. Light bulb moment – it’s because I can’t just glance over a form and figure out the important parts, or what it is about. I have to laboriously read it in it’s entirety instead.

I am also very limited on what I read on the internet, articles and such. Now I realize it might be partly because I have to commit to reading every article completely and seriously… and most internet articles just don’t deserve that level of attention. That cuts down on the number of topics I can casually check out, and also increases how much energy it takes me to engage with them. Wow.

And the paperwork in my life. I just recently gained Medicare coverage, and both the government and my new prescription plan sent me lots of papers. Lots of papers. I read the Welcome to Medicare pamphlet they sent from front to back. Every word. Not something I would have bothered to do in my previous life Then, I would have just glanced through it and left it at that, confident I got the important bits.

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They actually did a good job making this easy to read. Go Federal government!

My inability to scan the written word must contribute to why I feel insecure about official information I read. I assumed it was because of my now less-than-stellar memory, and my concern that my brain wasn’t processing the information correctly. Now, I realize part of it is also that I fear I’m missing something, something important, because I can’t scan all the information. If something isn’t in bold, highlighted, or written in some other way to make it stand out, I might miss it.

I wonder why I’m not able to scan right now, and if it will return. I expect it will. I vaguely remember scanning articles once or twice, on good days, sometime in the last year or so. Whether that’s true or not, I don’t know, but I feel like it is. That means it’s just a very peak ability for me right now, not lost. Probably, as my energy improves and my cognitive ability is on a more stable foundation, it will become part of my life again. That will be convenient, when (if?) it happens. A small tool, but a powerful one. Certainly one worth having in my toolbox.

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Why Oh Why?

Something is wrong, and I want to know why. I went out with a new friend for dinner tonight, and by the time I got home – now – something broke, something is no longer right with my brain. I have a pounding, full fledged headache, the type I manage to avoid most of the time. Fog, fatigue, and confusion have settled over me, stifling my evening conversation with Mary. I try to pass it off as a little thing, that I am just a bit out of it… but that isn’t true, and Mary knows it.

Mostly, it is my words giving me away. Or, more specifically, my stuttering. Stuttering has been one of those less than pleasant outcomes of experiencing a concussion. A problem that I never had before, but now seems to be here to stay. I can go days – weeks even – without stuttering once. Or, if I feel like I am going to stutter, I can pause and choose a different word. Something that doesn’t start with a “W” or a “C”. Something that still gets my point across.

But tonight, for whatever reason, it is bad. Worse than the fog and fatigue would imply. I have trouble speaking, repeatedly. I stutter even on the most routine phrases. Some words I am not able to get out at all, and it frustrates me. I heave a great sigh, then soldier on. It is what it is. I accept that whatever I will say tonight will be inelegant, choppy, and weird-sounding. After more unclear, disjointed words – sentences seem beyond me tonight – I give up. Nothing life-threatening needs to be conveyed at the moment… it can wait until I am more coherent. I’d rather listen to Mary’s stories of her day, anyway.

During these times of true fucked-up-dom, these times when my ability plummets and my symptoms are really bad, it only bothers me a bit. I mean, as long as I don’t have anything planned, or anything pressing that needs to be done. I just relax into the reality of my limitations, confident (hopeful? expectant?) that things will be better tomorrow, after a good night’s sleep. It is evening, now, and I have done all that I have planned for myself today. Nothing else is required of me. My brain melting into a puddle? Meh. Not great, but not the end of the world.

I know it upsets Mary much more than it does me. Usually she hides it, but this time she said it right out. “It upsets me when you do that” – that being stutter, saying unrelated words in an incoherent manner, and being unable to carry on a conversation. I wonder if it is her fear that these impairments will come back to stay, or if it is frustration at not having someone competent to come home to, or anger that I have these problems at all. I don’t know. In truth, it doesn’t matter how she feels. Tonight, there is nothing I can say to make it better, to make it different for her. Hell, there is nothing I can coherently say to comfort her.

My lady is a problem solver, though. And a damn good one. So, of course, we inevitably move on to sleuthing. Why? Why am I this way, tonight, right now?

These stupid symptom, these irritating impairments seem to have popped out of nowhere. And, they might have. But likely, there is a reason or reasons my abilities have fallen so abruptly to way below my new normal. Mary and I have been doing this a while, so we consider everything. What might have caused these symptoms?

  • Sugary desert? I had about four bites of a sugary treat at the end of dinner. I don’t usually eat a sugar bomb like that, and maybe that caused short-term inflammation in my brain and decreased my functioning.
  • Salty soup? I had some sort of egg drop soup for dinner, and it had a strong flavor. Perhaps it was full of salt and dehydrated me, causing the headache.
  • Doing too much? I was kind of tired today. Not deeply fatigued, but a more general overarching feeling of tiredness. Perhaps with that high baseline of fatigue already, I overdid it driving to and from btown in traffic and having dinner out. Maybe that pushed me over some invisible edge, and now I am descending into the darkness and pain of overdoing it.
  • Menstruating? I started menstruating today. That always gives me a day or two of noticeable low energy. Plus, I’m taking ibupropen for bad cramps, which has a history of dehydrating me, too.
  • Poor sleep? Is this just the outcome of a few days with only mediocre sleep? I keep waking up at night for some reason, and my sleep has not been as restful as usual. Perhaps this worsening of symptoms is from that.
  • Overstimulation? The place I went to eat had music in the background, just loud enough to be particularly annoying. Once other people started filling the restaurant, I was no longer able to hear my companion. Perhaps all of that stimulation pushed me over the edge of functioning?
  • Slouching? I slouched through dinner. The chairs were uncomfortable to lean back in and I was trying to engage my dinner guest, so I leaned forward onto the table. Perhaps an hour or so of that tightened my shoulder and neck muscles enough to give me the headache and the poor brain functioning.

It could be any of these things. It could be none of these things. It might be several of these things. Did I mention it might have been none of these things?

That is the frustration with brain injury symptoms. They come and go, and sometimes it seems completely random. They come and go, and somethings there is a reason or reasons that can be fixed. It is hard to know, in each situation, what is actually going on. Perhaps my headache is from the half moon shining tonight, and the brain fog is from eating swiss chard yesterday. Absurd, I know, but possible. It all feels absurd on some level – this injury, these symptoms, the long arch of my healing, the continued impairment. How fucking absurd.

Anyway, when it comes down to it, there are only a handful or so solutions to be implemented. There are only so many things we can do in the moment, and hope to make it better. Here is what I ended up doing tonight:

 

  • I rested in a darkened room with my eyes covered for quite a while,
  • I drank glass upon glass of water,
  • I did the stretch the PT recommended to help with my headaches, the one that relaxes my shoulder and neck muscles,
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Even when my brain is not working that well, I can manage laying on my back and stretching out my arms.

  • I took my first CBD pill to combat any potential brain inflammation and to combat tight muscles,
  • I chose an electronics fast – no tv, no phone, no computer, and
  • I went to bed an hour early.

I sleep well enough. I wake at 4 am feeling dry so I guzzle a pint of water. I wake at 8 am, and drink another pint as I am still thirsty. Thankfully, by this morning my headache is just a dull tension headache now. My mind is clear and my functioning within my current normal range. The crazy night of impairment has passed, with no lasting effects.

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What a relief the morning can be.

Why did it even happen? I have no idea. I will probably never know exactly what caused it. But with Mary’s encouragement I trotted out all my solutions, knowing one or more of them would help make things better. And look, here I am. Healed for now. Writing. Functioning. It is a good day.

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Staycation

The waves swish rhythmically against the shore, small and frequent. A steady breeze from the north keeps the bugs away – mostly – and the sun is blunted by layers of tree leaves. I sit here in my beach chair, writing this, as Mary bobs in the water near the shore. As I watch, she slowly travels down the coastline, becoming smaller and smaller. She motors away to explore new lands; her relentless sense of adventure has followed us into vacation.

Suddenly, a series of louder and bigger waves break against the shore. One, two, three, four and then the familiar rhythm returns. A thousand feet away or more, boats motor back and forth. Far enough away that the sound of their motors isn’t irritating, close enough to see all the different types of boats putting by. It is amazing to me that such a distant thing – a small boat traveling through the water – can have a specific and notable effect on the shore a third of a mile away. Thirty or forty seconds pass, maybe a minute, before each boat’s wake hits. The boat is gone before it’s waves wash against our shore.

Mary and I are experiencing an excellent staycation over this elongated Fourth of July weekend. We, who live year round in a summer destination, have made a point of enjoying the local beauty and beaches this year. It is in our budget, too, which helps this time feel relaxing.

Now I can barely see Mary, she is so far away. She stops periodically and waves to me, just so I know everything is okay. I wave back, to reassure her I see her and that all is well here, too.

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You can barely see Mary in this photo (black arrow), as she explores the next stretch of beach.

I could have joined her on her adventure, but in truth our water interests aren’t quite balanced. I can take her anywhere and if there is water to be swam in, sat by, or touched, she is happy. Me, I like water, I like swimming, but I like other things too. I can’t stay in the water all day bobbing around or poking along the shore as Mary can. So, instead, I sit in the shade and write this blog post.

I haven’t taken a vacation in a long time.

As I write the word vacation, part of me protests. Dude, you can’t take a vacation! You don’t work. Every day is a vacation for you! And really, if I am always doing less than average, less than a normal person, how can I take a vacation? I’m not meeting general life accomplishment goals, how can I stop when I’m failing and do even less?

As I catch that thought, those feelings, I stop them in their tracks. There is no room for that belief in my world. Disabled people – impaired people like me – deserve and need vacations too. Even though I am performing below cultural expectations, I need to stop trying to accomplish or succeed for a little while and just enjoy myself. I don’t have a boss telling me when I can or should take a break, so I have to tell myself, figure it out myself like so much of this healing journey.

To vacation, one must take time away from one’s daily activities. Period. If those daily activities are working for money, great. If those daily activities are feeding myself, weeding the garden a bit, and petting cats, great. The routine still needs to be broken. And desperately.

Last week, it was all write write write. I thought about writing, I read other people’s writing, I went to a writing group and talked about writing. Then I did more of my own writing – I was hoping to start building up a reserve of blog posts so that I can feel a little less pressure every week to produce. And you know what? Without even knowing it, without being aware of it, I overreached myself. I became tapped out, used up, out of ideas and passion. Done.

So it was time for a vacation. And, incidentally, Mary was off at the same time I realized I needed a break. She has an extended 6 day weekend, and we have been beaching and swimming it up every day.

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I still have a waterproof camera that works, and I still take about this same picture of myself at every swimming hole.

Vacation is a time to recharge. Nothing has to be accomplished. There is no intent, no focus required. The whole point is just to be, to relax, to think of nothing and just enjoy. And that is what I have been doing.

And so, I am on this beach, watching this woman, and enjoying our time.

True, since it is a staycation, we could do this beach stuff any old time. But here’s the thing – here’s the bonus of it all. Our area is in the middle of a heat wave – a really unpleasant one. High temperatures and high humidity make Charlie a tired, foggy, and grumpy girl – without swimming intervention anyway. No AC in our main living area. Sweltering.

Mary and I – both go getters, both task oriented – are so overheated and tired out from the heat that – ding – we aren’t doing anything. We are just relaxing. Sitting outside, staring into space. I’ve been watching my bees. Mary has been getting a lot of sun. Lots and lots and lots of swimming to keep cool and stay sane. So much heat, that I don’t even have the urge to do any tasks. It’s that hot. And so, for the first time in I don’t know how long, I am on vacation. Really. For sure.

And I’m loving it.

So adieu my friends. This is an extended status update. I am not allowing my vacation to be broken up by a task so heavy as finishing a blog post. So you’ll get this writing just as it is. Blessed be.

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