Thinking beyond Christmas – so I can relax and enjoy it now

I’ve got my hands full, for the next 24 hours. I’m coming down to the wire with shopping and cooking and preparation for Christmas Day tomorrow. My spouse and I typically take it easy on Christmas, when we’re at home.

And this year, like last year — and several other years before that — we’re at home. Just the two of us.

No two days of driving, in both directions.

No packed houses with lots of people vying for our attention.

No navigating family dynamics and going the extra mile to let everybody just be who and what they are.

None of that. Just peace. Heavenly peace.

And to make sure it stays that way, I’m thinking ahead to the coming week, getting my schedule clear in my head so I don’t have to deal with a bunch of surprises, on down the line. I’m not very fond of surprises. I’ve got enough on my plate that I already know about, and I haven’t been sleeping well, lately, so that makes me more irritable and hard to deal with. I need to take better care of myself wherever I can, for the sake of everyone around me.

And that means streamlining and planning ahead wherever possible.

What do I need to do, this coming week? We’ve got some appointments we have to attend. I also have some car repair work I need to schedule. And I’ve got a handful of things I’d like to sort out around the house, too. Like do much-needed organizing of the files on my computer and the various “thumb” drives I have. I’ve got a lot of USB drives with a lot of stuff on them, and it’s time I consolidated them. Also, cleaning up, organizing the various rooms in the house. Moving furniture we don’t use to the basement, making room for the things we do use. Making space to move and breathe and live. And unwind.

Unwinding is good. I’ve been pretty tightly wound for quite some time. Unwinding will be a welcome change.

Before we know it, it’ll be 2018. Christmas almost seems like a blip on the screen, but of course it’s not. It’s a pretty big deal for my spouse, and I need to do my part. I’ve never been much for holidays, birthdays, special events — they all seem like just another day to me. But being part of something bigger than me — which also really matters to my spouse — is more important than indulging my Bah-Humbug spirit of the season. Just gotta put my own sentiments aside and get into it.

It’s not forever. And it won’t kill me to just go with it.

So, go with it, I shall.

And then… into the New Year with a positive frame of mind.

It’s the only way.

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No, it’s not fair. I have to plan accordingly.

person sitting on a park bench looking at a coming storm
Photo credit: Myshelle Congeries

I split my day yesterday between handling a Saturday conference call for work, and going to see a friend in the hospital who may be dying. It really wasn’t fair. To anyone.

The phone call happened at 8 a.m., when a co-worker called to ask me if I was going to join the conference bridge. Sh*t! I knew the call was scheduled. I’d been talking about it all week. But Friday night, my spouse got news that our friend needed to see us soon, so we gathered that they were doing poorly and we needed to see them one last time before they passed away.

Their whole situation has really sucked. They have an aggressive and rare form of cancer, and their numbers have been up and down over the past year. They underwent a last round of treatment — a last-ditch effort — and the results were not what the doctors hoped for. So, they’re preparing for the memorial service, getting their affairs in order, and seeing people one last time before they go.

That’s where my head was, yesterday morning. And it took my mind off my regularly scheduled activities, which included the conference call. That wasn’t fair to my co-workers, because I had promised them I’d be on the call at 7:00 a.m., but I didn’t show up till 8:15. I felt terrible about it, but we just had to dig in and take care of what needed taking care of. It sort of happened, sort of didn’t.

We’ll try again on Monday.

The trip down to the hospital, which is in the next state, also wasn’t fair to me. I was really worn out, in general, and pushing myself to help my spouse get their act together, while they struggled with all the emotional baggage, really over-taxed me. It was nothing new — that’s how things have been in my life, as long as I can remember. I’m just getting more clear about how unfair that really is to me. Avoidable or not, whether I want to do it or not, stuff will need to get done, of course. So, I can’t expect life to be fair to me, the way I’d like it to be.

The important thing is that I’m actually thinking about how it works for or against me. And I’m getting clearer on how to better care for myself in the face of life’s inherent unfairness.

And then there’s our friend. Their dire, extremely mortal situation is completely unfair. They’ve lived a good life full of compassion and service… and then this happens? Bizarre. Tragic. Unfair. And the financial burden on their kids, who have to pay for all the hospital bills (for a journey that isn’t ending up where anybody wants it to), is also deeply unfair. They should only have to pay for what works, but of course, they’ll have to pay for everything. And they’ll still have a massive hole left in their lives.

The whole thing really pisses me off. But that really only impacts me. It doesn’t change anything about life.

The one thing it does impact, is how I live my own life, how I know I have to take care of myself and make my own provisions and line up my own help in the way that I need, because my spouse really isn’t in any shape to come to my aid, if something really bad happens to me and I become incapacitated. This whole experience of watching our friend struggle through so much just re-emphasizes how important it is for me to take excellent care of myself. Because nobody else really can, the way I need them to.

And life isn’t fair.

So I have to adjust to that fact. I have to do everything in my power to keep myself in good stead… and also put supports in place that will help me, should I end up on my own and/or get into a situation where I’m no longer self-sufficient and need assistance.

I actually am pretty much on my own, anyway. But things could get worse for me. So much worse.

Plan accordingly, I tell myself. Plan accordingly.

Maintain… maintain

files and papers stacked in two columns
This is pretty much how the last week felt for me.

I’ve had a really busy week.

After a week off.

A real contrast. Very extreme.

Ouch.

Literally.

Ouch.

But for all the busy-ness, I didn’t move as much as I should have — and normally do. I spent most of the past week sitting. Just sitting. In workshops. Not moving around, not stretching my legs, but sitting and listening and talking.

Ouch.

Just getting up and walking to the cafeteria was painful. It’s the worst of all worlds — being sedentary and having to concentrate really hard. Just doesn’t work with me. I can do it for a day, but three days in a row?

No thank you.

Now, my extremes continue, as I launch into a day full of errand-running and travel and helping my spouse with a fundraiser event. I’m just driving. Not “working” the event. I’ll have time to myself while the event is going on to do some fun things and also catch up with a friend I haven’t talked to in a while.

So, even though it’s busy, it’s all good.

The past week has really brought home, just how important it is for me to move regularly. On vacation, the week before that, I was in motion on a regular basis. Even though I was “off work”, I still had plenty to keep me busy — though in a good way. Buying groceries so I could make us nice brunches and sandwiches for the beach… arranging for special permits, so we could access different parts of the area and have a really great experience… getting out and about to see what was going on in the town… and exploring the beaches and hiking paths.

It was a very active “time off”, and it felt great. I didn’t get much done that was sedentary, like reading or blogging, but that was perfectly fine with me. It was a fair trade.

But now this past week… ugh. I was too busy to get in my regular exercise, I didn’t get enough restful sleep, I had appointments in the evenings that cut into my regular schedule, and I had to start early each day, so I didn’t get as many morning workouts as I needed. And my daily eating was off — I ate too much food, and it was the wrong kind.

Fatigue. Brain fog. Pain. Confusion. Irritability. Far less functionality than I normally have. And the constant nagging feeling that I’m missing something, I’m forgetting something, I should be doing something I haven’t yet thought of.

I’m glad that’s over.

Now I can get back to my regular routine. Get a decent night’s rest, each night, exercise each morning, eat the foods that work for me, move around during the day, stretch regularly, drink plenty of water, and get back to life as I’ve developed it.

There’s a reason I do what I do. And there’s a reason I keep doing it.

I’ve tried the other ways. They seriously just don’t work for me.

But I’m good, now.

I’m good.

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Back to regularly scheduled sleep

5811f-rest_stop_brown_bear-1600x1200I woke this morning at 6:30 – but I still got almost 8 hours of sleep.

My intention is to keep it up.

I’ve switched around my morning routine a bit – must exercise each and every morning, no matter what. Even just a little.

And swim more than once in a while.

I swam yesterday, and was it ever great!

I have also addressed my junk food cravings from the past weeks. I think the business trip threw me off just enough to stop the cravings, so that’s helpful.

And life is good!

Tracking sleep

fairgroundThe countdown to my business trip is T-minus-4-days. And in the meantime, I’m taking care of my everyday life as best I can.

I’m seeing the neuro nurse practitioner tomorrow, and I’ll be reporting in about my sleep.

Below is a chart of the numbers I’ve collected for every night over the past month. It shows how many hours I’ve slept, as well as how many hours I napped. And it shows how I stack up, relative to my target time of 8.5 hours.

sleep-log-april-2016

I’ve been falling short consistently, apparently. I’ve been thinking I’ve been doing well, but when I see a chart, it’s clear I have a ways to go. A couple of weeks ago, I was really behind on my sleep, due to work stress and a conflict I had with a friend of mine that really got me bent out of shape. I know I shouldn’t let it get to me, but it did.

I am human, after all.

So, this is all stuff to work on. Things to stay mindful of, and not let it all get to me. And to find ways to calm myself down and chill out, rather than getting wound up and bent out of shape. Maybe I’ll put a printout of the chart beside my bed. Yeah – that’s a great idea for a reminder.

I’ve been prepping for my business trip next week, doing some shopping and also some checklists, as well as practicing my talks for the trade show booth. I’m not feeling a huge amount of pressure, though. If I do a good job, then fine. If not, I’m not sweating it. In a way, I don’t really care about the event. I care about the customers I’m going to meet, and I care about the people I work with, but I’m not personally invested in the company. Not anymore. Not since they’re selling out, lining the pockets of the people in charge, while laying off a lot of people.

So, I’m treating it like a free trip to a part of the country I’d never normally go to. Resorts in warm climates are fine, but I hate amusement parks and places where large crowds gather, so yeah, this will likely be the one and only time I ever go to this place.

One good thing is that I’ll get to see a relative I haven’t seen in over 30 years. They’re living in the area, and I’ll get a chance to catch up with them, which will be nice. That will get me off the hook of hanging out with my workmates, who just want to run wild and party while they’re away from their spouses.

I have no interest in joining them. I see them every day, as it is. I’m just going to do my job, and then come home. I wouldn’t even go to the place, if it weren’t for work. I need my sleep (see above). I need to eat right and take care of myself. I can’t get drawn into their version of fun.

So, I’m hoping my relative can provide some welcome respite from their company. It’s a plan, anyway.

In the end, I’m just looking forward to everything being over. Flying there, doing the job, flying home… and getting back to normal again.

But that all feels like a distraction from what my real focus is — getting enough sleep, so I can keep my health in balance… and also not have to use the sleep medication that was prescribed to me. My old neuropsych warned me away from it, because although it supposedly metabolizes quickly, that’s not true for everyone. And I’m so sensitive to meds, as it is, I can’t imagine my body is going to behave like everyone else’s.

The neuro visit this week is really just a way for me to check in — and check out. They don’t seem very interested in addressing the reason I actually went to see them – my balance. So, I’ll handle that myself. And never mind the pills. Or the procedures. They’re not that helpful, anyway.

I think my biggest frustration is that I go to these specialists in good faith, believing that they are willing and able to assist me. And then they just don’t deliver. Or show much interest in delivering. There are a million possible reasons, but figuring it out is not the best use of my time.

I’ve just got to keep the focus on myself, on keeping my own balance in every way possible, and keeping myself fit and capable as best I can. It’s really the only way my life is going to be as great as it can be.

And that’s my intention, really. To just have a great life — and enjoy it to the fullest.

Chronic Blogging – Getting Properly Setup – Blog Configuration Basics

I like WordPress. A lot.
I like WordPress. A lot.

The first order of the day is to get your blog properly setup and configured. This is not nearly as difficult as it sounds, and what you do here, can really help you in the long run.

The first I’ll discuss is the basics of setting up your blog to make your life easier. With technology, it’s easier than ever to complicate everything — to the point where you just don’t want to do it, anymore. I’ll keep things simple here. I also won’t cover every single topic I can think of — just the basics you should consider.

There are a lot of great books and websites out there that can offer you in-depth tips and tricks. Use them as much as you can. There are lots of smart people who share really useful info with the world.

In this guide, I’ll talk about using WordPress, because after years of blogging and using different systems like Blogger and Typepad (and some others I can’t recall the names of), WordPress is my favorite for a number of reasons.

  1. It’s stable and well-supported. It’s not just a side project of some folks who needed to do something fun and fulfilling on the weekends (that happens more often than you think). It’s managed by real people who do it for a living. And it’s actively supported. Sometimes they make changes to the interface that drive me nuts, but overall, it’s worth the hassle. There’s a ton of help and documentation about how to different things, but you can do a lot with just a little bit of information. There are many, many themes (designs) that give you a lot of different options, and they are also well supported.
  2. You can do a lot with a little — for free. You can sign up for a free blog and be publishing your work in a matter of minutes. There are a lot of different customizations you can do, but you don’t have to do many at all, to get a functioning blog that looks good. Simplicity is important, if you just want to focus on your writing, instead of configuring your “technical platform”. And it doesn’t need to cost you anything other than your time and attention.
  3. It has a lot of SEO stuff already built in – like “human-readable” urls, correct html, consistent page designs, and the ability to optimize your images so search engines love you. That is so important — I think one of the reasons I rank pretty high in Google, is precisely because I am on WordPress.
  4. You’re automatically connected with a wider community. WordPress has a ton of bloggers on it, and they’re all connected via the Reader feature. You can easily find others on WP who write about the stuff you’re interested in, and they will show you the tags that people are using, so you not only find out who’s writing, but what they’re writing about the most.
  5. They make it really, really easy. Signing up is easy. Setting up is easy. Blogging is easy – and you can also password protect and schedule your posts, if you like. Promoting is easy, too. For example, if you want to tell the world whenever you post to your blog, you can hook up Publicize to post to FB and tweet automatically whenever you publish. That’s important for your wider community.

I could list many, many more reasons why WordPress is my blog platform of choice, but the five above should be enough to convince you to give them a try.

In this section, I’ll talk in some detail about the basic things you want to do for proper setup.

  • Picking the right theme (design)
  • Setting up your blog with the most important elements – sidebars, widgets, sharing, and pages
  • Making your blog readable
  • Managing publishing, comments, and ongoing discussions
  • Making sure search engines can find you

You can read the tips and tricks in order, or you can take them piece by piece in whatever order you like. You can skip around and do what you please, and any one of these changes can make a positive difference. We don’t need to “boil the ocean” here – dealing with chronic health conditions is a big enough challenge, let alone adding a regular writing practice to the mix. You can make it as simple or as complicated as you like, but even in its simplest form, a blog can make a positive difference in others’ lives.

Chronic Blogging – Good voices needed by good people

It doesn't take much to get started
It doesn’t take much to get started – you just have to keep going 😉

Dear blogger – I want to help you become better at what you do.

Especially if you blog about chronic health conditions (spanning mental health to physical conditions), you’re in a great position to help others who share your same situation and concerns. Many folks with chronic health issues are housebound and don’t have a lot of contact with the outside world. Some are isolated by their conditions, and many have lost their social support network because their one-time friends just couldn’t deal with their problems.

You know first-hand what it’s like to be hampered by chronic conditions, so your voice can help others to better understand their world, as well as feel less isolated.

When they first started picking up steam, about 15 years ago, blogs were a novelty. They were something only egomaniacs bothered writing, and only voyeurs bothered reading. They were dismissed by “serious readers”, partly because the medium had not had a chance to mature. But over time, the depth and breadth of blogs written by genuinely good writers, has won over countless readers. And some bloggers share the same regard and influence as well-known journalists – some of them enjoy even more.

I’ve been “chronic blogging” about my ongoing recovery from repeat mild traumatic brain injury (mTBI/concussion) since around 2008, and it has been a long, slow process developing both the blog and a readership. I started out wanting to just help others with information I gathered, as well as sharing my experiences. And there were times when I just didn’t write very much at all. Also, at the start, I was very verbose… rambling… overly emotional… kind of a mess. But some of my readers complained, and I stopped whining constantly.

I wanted to do something really useful, not just vent all the time. And so I changed things up, tried different approaches, and I learned from my mistakes and successes alike. As of this reading, my blog Broken Brain – Brilliant Mind (brokenbrilliant.wordpress.com) has had 433,743 views from 192 different countries. That’s a result of posting nearly every day for the past several years – 2,615 different posts since 2007.

10,000 foot view
10,000 foot view

By far, though, the most gratifying thing has been the feedback I’ve received from others. There are a lot of people like me out there, who feel isolated and alone and without access to support. Their feedback has been so welcome, so fantastic, so heart-warming. It’s not always easy to hear people’s accounts of their own difficulties, but knowing I’ve helped ease their pain – even just a little – makes all the effort worthwhile.

It’s still an occasional challenge to keep from whining – and sometimes I don’t manage to suppress it very well. But I’ve found a lot of satisfaction from researching my own health issues and sharing what I find with others, as well as publicizing the work of other brain injury and chronic health challenge bloggers. There really are a lot of great folks doing fantastic work out there – and we can always use another strong voice.

If you’ve ever thought about starting your own blog, or you’ve got one going and you’re looking for ways to increase your exposure and grow your readership, I may be able to help. I have been working with this “web stuff” for 20 years, now, so it’s second nature to me. But it’s not obvious to most folks. SEO, in particular, is shrouded in unnecessary mystery (probably to keep consultants employed), however you’ll probably find that common sense trumps gimmicks every day.

Ultimately, it’s really about building community – reaching out to others who need your help or could use a friendly voice – and making us all stronger in the process. I’ll do my best to provide truly useful tips and tricks, without overwhelming you.

Try doing some of this a little bit at a time, and really give a lot of thought to each piece of the puzzle. It’s a discovery process, and it may take months for things to turn around for you, but I believe that these changes can really help you a lot in your blogging.

If you’ve got something to say about managing a chronic health condition, and you want to help others, by all means, join us with your blog. It’s a lot of work and it takes a lot of dedication and discipline, but it’s also incredibly rewarding.

Getting going on the week

calendarYesterday was a low-key day. I had to do a bunch of things at home in the morning, so I was late getting to the office. And then I was up to my eyeballs in crunching data all day long.

One of my coworkers didn’t even know I was there, till they were leaving and walked past my cube. Then we chatted for half an hour about home repairs and the best way to store lawnmowers over the winter. I picked up some good tips that I’ll have to try.

I need a new lawnmower. My current one is 10 years old, and it’s on its last legs. And the next time around, I will do a better job of taking care of the equipment I have, so it lasts more than 10 years.

So, now it’s Tuesday. My week is pretty open, which is nice. It will give me plenty of time to focus on some projects I’ve got going, which need many hours of thought and consideration.

The merger situation is progressing. Still, nobody knows what will be happening. I got a message from one of my old coworkers, asking if I’m still interested in coming back. They are hiring for the position I seek. I told them “perhaps”. And gave them my phone number. We have been missing each other — I didn’t see their message from last week, until yesterday. I hope the situation is still viable.

Then again, maybe I don’t… I left that old job for a reason. It wasn’t the best reason, but it was a reason.

Anyway, we’ll see what happens. I’m in a holding pattern, and it’s annoying me. Then again, it is giving me freedom and leeway to focus on some of my other projects… I’m writing up a short guide for “chronic blogging” – to help other health bloggers reach more people and help folks who are in need of information and support. A few other brain injury bloggers have contacted me for tips, as I’ve enjoyed a bit of success in the space. I’m happy to help — we need all the strong voices we can get. And we need to hear from real people, not just companies selling products.

So, that’s what’s happening this week. I’m looking forward to seeing what happens.

Ha! The extra exercise worked

It's important to keep the right balance
It’s important to keep the right balance

So, yesterday, I exercised twice — once in the morning, and again later in the afternoon at work. There’s an aerobics room at the gym at work, and it’s walled with mirrors. That’s exactly what I need, so when I’m doing some movement, I can work on my form and be mindful of how my body is actually positioned as I move it.

I picked up a lot of bad posture and positioning habits when I was younger, and that’s cost me valuable time later in life when I pulled or strained muscles, due to bad form. And then I had to sit out for a while, till they got better. And by the time they got better, I had forgotten about doing them at all. And I lost more time, till I got inspired to do them again.

So, keeping myself in good form is important. And I had the chance yesterday afternoon to spend about 20 minutes moving and watching myself move, making sure I wasn’t moving in ways that strained my back and hips and knees, and all the other connections that have given me trouble over the years.

I didn’t spend a ton of time on it, yesterday, but it was enough to wake me up, and also give me a bit more of a workout. I had been planning on getting an extra exercise session in, when I got home from work. But to tell the truth, I’ve got to make supper, and I’m so done with the day, by that point, that I just want to make supper, talk to my spouse, and chill out.

So, exercising for 30 minutes during the day is really a good option for me. It breaks up my afternoon, and it also wakes me up.

And last night I went to bed by 10:00 and I woke up close to 7:00 a.m. — nearly 9 hours of continuous sleep. Amazing. Just amazing. I’m still feeling a bit fuzzy and groggy this morning, but the fact that I got that much sleep makes it all the better.

Plus, this afternoon, I have no meetings, so I can do it again. I moved a little bit this morning, to work on my balance, and also get a sense for where my body is in space. With my balance issues — which are the one outstanding remaining danger for me and my physical safety — I have to do something. The neuro I went to see to help me with it, doesn’t seem to take my situation all that seriously. Hell, they don’t seem to take ME all that seriously. So, I’ll just have to take care of this all, myself.

I can probably do a better job of it, anyway, because I know what my issues are. I have no trouble articulating them, because I don’t need to — I’m walking around in a body that’s got movement and balance challenges. I already know first-hand what the deal is, and I don’t have to convince anyone of it.

And that makes it a whole lot easier to deal with.

Personally, I’m sick and tired of people not taking me seriously, not believing me, and dismissing me — or brushing me off with some bogus explanation, because they can’t be bothered to look deeper. Maybe it’s a function of the medical system (I won’t say “healthcare”, because there’s something else driving it than “health” and “care”), which routinely traumatizes and exhausts its members, and then expects them to turn in stellar performances. I have to factor in that I’m dealing with professionals who are A) impaired at a functional level — and have been, since they started med school, and B) honor-bound to flatly deny that lack of sleep, secondary trauma, and the pressures of the insurance companies could have a negative impact on their performance.

So, I have to take it all with a grain of salt. And just use them for what they’re good for — prescriptions, if I need them. IF I want to take them — which I usually don’t. They’re gatekeepers for insurance companies, and little else, from what I’ve seen. Just as many financial advisors are little more than highly compensated sales reps for financial services companies (I know, because I was recruited by a fin svcs company many years ago, and I got an inside look at how things work — and I opted out).

So, all that aside, it feels great to be doing something for myself. I forgot to contact that trainer at work again, to go over some complex movements and strength training approaches. I’ll make a note to do it today. I’m feeling a lot of anticipation about this spring… I think it’s going to be a good one. And an old project I had put aside, years ago, has now suddenly shown itself to be feasible, as a solution to one of the big conundrums I couldn’t sort out before has suddenly become obvious to me. So, that’s a nice thing. Very nice indeed.

It’s amazing, what 9 hours of sleep will do for you. I’ll have to try for this again… and again… and again…

Onward.

Finding new doctors this year

group-of-doctors
I just have to keep telling myself, They Want To Help.

I need to find a new PCP – soon. My doctor, who I really liked a lot, and who worked with me better than anyone else I’ve ever met, passed away last September. I am still on the books with the practice, and I was seen by the doc who runs the practice, who I do not like at all. When I was trying to get clearance for neuropsychological testing, I had to be seen by a neurologist, and the doc who runs the practice is the local “gatekeeper” for referrals.

My insurance at the time was terrible for mental health/neuro things, so I had to get special permission from my hospital system — and that gatekeeper tried to stop me from finding a specialist in a nearby city. They wanted me to stay within their provider network. It’s great requirement for the business side of the hospital system (they nearly went bankrupt, 10 years ago), but it is a terrible idea for patients who need specialized help that can be found quite easily at locations less than an hour away.

So, I’m not a fan of that doctor. I’m not sure if they realize how much I detest them — I didn’t let it show, when they gave me my annual physical last fall — but I hope I never need to explain that to them.

I just need to move on.

Additionally, I have to find a new neuropsychologist, as my current one is retiring in a few months. I’m pretty anxious about this, because I completely lucked out that I connected with them at all. They have offered to help me find someone new, but in the past, they’ve been pretty unreliable, and they’ve also  steered me towards people who just weren’t good matches for me.

So, I’ve got to start that process again. The last time I went through it, it was stressful and somewhat traumatic. Insulting. Humiliating. Depressing.

But that was over 8 years ago, when I was still in a pretty dense fog from my TBI in 2004. That’s changed. I’ve changed. I can do this… I have to keep reminding myself.

Because I sometimes forget.

Anyway, it’s turning out to be a decent day. Time to get out in it and have some fun!

Onward.