This one’s been out a while, but it’s a catchy tune, and a pretty good message. Here’s a little inspiration for you tonight, courtesy of Lady Antebellum, and their song, Compass.
It’s been a crazy couple of months. I don’t remember the last Saturday when I wasn’t working, on the road, or completely under my GBS symptoms. But today, I decided to take it easy. I needed a down day after so much craziness. Note that a down day still included a trip to the bank, fixing a plugged sink drain, watering the plants, 3 loads of laundry, doing the taxes, buying tickets to a baseball game and sending some overdue emails. All stuff that should have been done a while ago.
So what’s been keeping me busy? Well, work mainly. My last contract had a maximum of 40 hours per week. This contract has no such clause. It’s work until the work is done, and the last two weeks have seen my time sheet hit 55 hours—an unthinkable number just a year ago. Even two months ago, 55 was something I didn’t want to do… and to be honest, I still don’t want to do it now. I’m not 25 anymore. But every once in a while, it’s what you need to do for the job. All I can say is that I’m so glad I get paid by the hour. I think I worked at least a little bit every day for the last 26 days. Crazy.
But scrunched into all that, were some other, really important things. Recently my son tested for his Advanced White Belt in Tae-Kwon-Do. Six months ago, when he started, he’d often become frustrated by not knowing how to do the moves required, and would come off the floor crying (he was 6 after all, that wasn’t unexpected). But the last class before testing for his belt, he was instructing the newest kids in the class on what to do. The confidence gained through his classes has been astounding, and we’re so proud of him. Here’s Reece getting ready to kick some butt. And yes, he usually is the smallest kid in the class.
On the writing front, I’ve not been writing much, again, mainly because of my work schedule. I’m due to get another round of edits from my editor next week. I spent the first weekend of February doing edits, and now it’s time to turn it around again. I never imagined when I started the writing thing that so many editing passes would be needed to get something published. But I think we’re getting closer. I’m hoping the edits this time around aren’t too major, but I’m planning on hunkering down next weekend to get them done.
When I do have time to relax (we’re talking less than an hour every evening), I’ve been working my way through a few television shows. I finished seasons 5,6 and 7 of Dexter, and yesterday finished season 5 of Breaking Bad. I can finally read the internet again, and not worry about seeing a Breaking Bad finale spoiler. I’m also finishing up season 3 of Game of Thrones. This show actually took me a while to get into. Now, I love it.
My commute back and forth to work has been about as bad as I expected it to be. 50 minutes on the way in (provided I leave before 5:25 AM), and anywhere from an hour (if I leave by 3 PM) to almost two hours if I leave anytime after 3:30 PM. I do get to work from home on days I don’t have meetings scheduled, and that helps. But what really helps is listening to PodCasts like NPR’s Planet Money and Chris Hardwick’s http://www.nerdist.com/. There have been a few times I actually wished my commute was a bit longer so I could hear just a little more that day.
On the health side of things, it’s been up and down for the last month or so. I had bad migraines for about ten days (probably caused by stress and fatigue), and as soon as they were gone, I picked up the cold everyone at work has. I’m in the midst of that now, hopefully nearing the end of it. From the GBS perspective, it hasn’t been bad, but I seem to recall that when my body is fighting something, the symptoms are, oddly enough, never as bad as normal. So we’ll see what happens in a week or so.
So that’s about it for now. I’d love to say I’ll going to get back to blogging more, but that’s probably not going to be the case anytime soon. Work is going to continue to be ridiculously busy for a while, and soon my son’s baseball season will start, and we’ll be doing something 3 or 4 nights a week. Blogging takes a back seat to that.
But I am thinking more about writing again. My brain is trying to figure out what world it wants to immerse itself into, and I’m already looking forward to the PNWA conference in July. Being creative isn’t something I can completely turn off. I’m glad that’s the case.
Yesterday marked the two year anniversary of my first moments with Guillian-Barre Syndrome—an odd tingling in my fingers and my lips that, within the next 24 hours, would spread throughout my body. Within 36 hours, I was in critical care, facing a long, difficult road to recovery.
When I pointed out to my wife that we were approaching this anniversary, she said “We’re not going to celebrate it, are we?”
No, we’re not going to celebrate it. But I did want to recognize that we’d made it this far. For certain, there were moments along the way I didn’t know what kind of life I would have at the two year mark. I was forced to live one hour at a time, one day at a time, as I struggled to walk, to see, to feel and to taste. Two years? That was forever… unimaginable.
But now, having arrived at this arbitrary, but important milestone, I can see that life is in the slow process of returning to normal. In fact, I didn’t write about this anniversary yesterday because I was out in my in-laws orchard picking up branches which had been pruned from the apple trees. The ground was covered in two inches of snow, and the air temperature hovered on the upper twenties. But I was out there working… not with the same speed and endurance I had three or four years ago, but with more energy, and less fear than I had a year ago. So that is something I did want to celebrate.
January, on the whole, was a tough month for me. I started a new job at the beginning of the month—a job which requires a longer driving commute, more stress, and more hours than I had at my last gig. The first two weeks were brutal. I battled insomnia, sometimes only getting an hour or two of sleep a night. I ended up trying the Nortriptyline again—something I had used last year when I started my first post-GBS job to help turn my mind off so I could get some sleep. The results were much the same. I broke the not-sleeping issue, but I after a couple of days, my nose started bleeding, and I just didn’t feel right. So I don’t take it regularly. I’ve found that if I sense I’m not going to sleep (it’s a self-fulfilling prophecy at that point), I can take a dose of it, and get at least half a night of sleep. It’s still not perfect… I’d love to sleep through the night every night, but at this point, I’m grateful if I get five solid hours, and two not-so-solid hours. Sleep, as I’ve said a thousand times, is key to recovering from GBS. If you don’t get it, the downward spiral is brutal and inevitable.
So what’s causing the sleeplessness? Is it my new job? Is it all the driving I do? Is it stress? Is it GBS? I don’t know for sure, but I’m guessing it’s an all-of-the-above kind of situation. I’ve had the same burning-skin symptoms in the middle of the night that I had last year, only this time, I also had a song stuck on replay in my head at a ridiculously high volume. I’ve had earworms before, but never at this volume or for an entire night. At least the Nortriptyline seemed to turn down the volume and broke the cycle.
On the good side of things, unlike last year when I started my first new job, I’ve been able to keep my exercise regimen going, and have added to it as time has gone on. I’m not in the best shape of my life, but I am probably in my best shape of the last few years (even pre-GBS). Keeping physically strong, even when exhausted or mentally fatigued, helps to prevent a downward spiral that takes more than a good night of sleep to alleviate.
Also, my foot has completely healed from the break I suffered in October, and I’m able to get around without issue. I’m still doing the ultrasound bone-stim treatments for a another week or so, but then I’ll be able to put that machine away and gain back a little more normality to my evenings.
So two years have gone by, yet the fight continues. I can’t say there are any days I don’t think about my GBS. I can’t say it has brought me more good than harm—who knows where I’d be right now with my family, my career and my health if I’d never had it. It has shaped my life, my work and my family in ways too numerous to calculate.
But hopefully, somewhere ahead on this road, there will be a time where I no longer feel the weight of those three little letters on a daily basis. That time is a lot closer now than it was a year ago. I’m not taking things one day at a time now. We’re planning… for next week, for next month and for six months out. That was impossible last year at this time. Maybe not impossible, but tempting fate at the very least. Now planning—living each day—seems natural. Life is moving on, and GBS will just be a part of it, until it isn’t.
Last year I resolved to get back into shape, get more out of my weekends, write another novel, keep my technical skills up, rebuild my circle of friends and to continue to build my brand.
Well, I think I’m in better shape now than I was last year at this time. I probably got more out of my weekends in 2013 than I did in 2012, but I can always do better. I did not write another novel. My technical skills are greatly improved over the previous year. My circle of friends is regrettably quite small, and my brand is basically nonexistent at this time. So I’m batting .500 for the year. Or maybe .333 with a couple of walks thrown in.
So here are my resolutions for 2014:
1. Stay in shape. It’s too easy to let my body go when I get busy, especially when my energy runs lows. But that’s a downward spiral. The less I work out, the less energy I have. So I’m just going to keep doing what I’m doing, and build my body up as best I can.
2. Write something. It seems like I’ve been in editing-only mode for forever. And I still have plenty of editing to do this year. So I don’t think I’ll have the time to write a whole new novel before the end of this year (unless something dramatic happens, which is always possible), but I at least want to get started on one. I’m not sure what it’s going to be yet, but I need to start thinking about it before I get rusty and start doubting my abilities again.
3. Family trips. We’ve been home-bound due to my illness for so long that we’ve missed out on some of the great trips that kids are supposed to take with their parents: Disney (which I’ve never been to either), camping, canoeing, Sunday bike rides. I just want to make the weekends and vacations count, whenever we can.
That’s all I’ve got for right now. I think 2014 is going to be a very busy year for me and my family. I just don’t want the day-to-day hectic life to overwhelm the enjoyment of my kids’ childhood. They’re at a great age right now, and I want to be a participant in their lives, not just an observer of them.
Well, I had high hopes for December, but I caught some kind of bug in the middle of the month that knocked me down for about five days. Usually colds and such don’t aggravate my GBS symptoms that much, but by the fourth day, I was pretty numb, and my vision had gone all to hell. The symptoms quickly got better, but it put a pretty good scare into me. I’ll admit I panicked, and thought the worst was happening: that I was having another relapse. Of course, that wasn’t true—but for about 48 hours, the worry was there.
However, as the symptoms began to get better, I went into a bit of an emotional funk. Everything had been going so well. All it took was a minor cold to send my pessimistic brain spiraling out of control. I worried that had I been in the middle of some work deadline where I couldn’t step back, I would have been in deep trouble. I worried that my plans to gradually expand my exercise regimen to rebuild my leg strength would have to be put off indefinitely. I worried that these damn symptoms could just come back at any time, now, or a year from now, or three years from now, and this is just what life will always be like: walking on eggshells, hoping not to wake up the sleeping giant that can crush my life, and my family’s life, with one bad cough.
It was at that point that I looked back at my own blog… back to the entries from 2012 and from earlier in 2013, to get a feel for just how bad it had been, and how not bad it was now. Instant perspective. I mean, the symptoms I had in December were annoying, but they weren’t completely debilitating—nothing like last August when I had the worst of my relapses, or like July of 2012 when I still couldn’t work back-to-back eight hour days. And they certainly didn’t come close to February 2, 2012, when this whole nightmare began.
When I started blogging about GBS, I blogged because it was the best way to tell people who knew me, what was going on. Then I realized that there was a community of people out there all suffering from GBS. It was interesting, and therapeutic, to hear about their version of this disease. At some point, I continued to write because I was getting so many nice emails from people who were just starting their battle against GBS. My blog became their source for hope. When the doctors couldn’t tell them what to expect, my blog at least filled in some of the gaps, or provided information on how to get the care they needed.
Little did I know, all those months ago, that reading my own blog would help to temper my own emotions during a temporary downturn. I’m glad I wrote those entries, for so many reasons. And I’ll probably continue to write them, as long as GBS continues to poke its ugly nose back out every once in a while, if only to give it a punch right back in its schnoz. It’s a fight I don’t intend to lose.
While 2012 was a year dominated by my recovery from Guillain-Barre Syndrome, 2013 was more of a transition year. It was the year I learned how to live with GBS and its lasting effects, and got back to living.
The biggest thing that happened in 2013 was returning to work, which I did in early April after taking a few months off to complete my recovery and to try to find alternate part-time work. The time off certainly helped, and part time work would have been nice, but I lucked out with my first contract job. It was capped at 40 hours per week, had plenty of work from home, paid me a good rate, and was, in general, a good welcome-back-to-the-land-of-the-living role.
But returning to work certainly had an impact on my my recovery, and on my life. For the first few months, it was everything I could do just to keep working. When I got home, I was exhausted. On the weekends, I crashed. When I had a bad stomach bug in July, I had a bad GBS setback that took a month or two to get past. When I was just about back to normal from that setback, I broke my foot and spent the next few weeks back on the couch. Returning to work didn’t cause all that, but I certainly didn’t have any energy buffer that allowed me to deal with the regular things that come up in life. One of the things to remember about having a long-term chronic condition like GBS is that the bad health things that other people get during a year—like colds, the flu and broken bones—can and do still happen during recovery.
But aside from the GBS, I did have a few other notable events during the year:
- I got to see my son play in his first baseball game, and begin to learn Tae Kwon Do.
- I watched my daughter learn how to do handstand, cartwheels, do vault and balance beam in her gymnastics class.
- I continued to work on editing Nowhere Wild, with each edit bringing it noticeably closer to being done.
- I rebuilt the muscles in my back and neck so that I rarely suffer from the migraines that plagued me during 2012. I continue to do exercises on a daily basis to keep everything aligned properly.
- I did four major speeches at Toastmasters. I wish I had been able to continue that after I went back to work, but it just wasn’t possible with my schedule and my energy levels.
- I published 60 blog entries… which is admittedly pretty low for me, but again, I had to budget my energy.
- I published an on-line novella called 38 Years Old (Never Kissed a Girl)
- I spent a lot of time watching TV, including binge watching series like Sons Of Anarchy (Season 5), Breaking Bad (all seasons except the end of season 5, please don’t spoil it for me), Under The Dome, Mad Men, Deadwood (Season 1), Orphan Black, Game of Thrones, Homeland, The Walking Dead, Dexter (Season 4), Veronica Mars (Season 1), and many, many others. I almost feel ‘caught up’, but I’m definitely ready to do something else.
- On the day job side of things, I really learned a lot this year, and pushed myself as hard as I possibly could to recover from a two year learning absence. Tech moves fast, and in my line of work, if you get left behind, it’s really hard to get caught back up. I still have a long way to go, but I feel much better about where I am now, than where I was back in March.
- As for the stats on this blog, I had a few less visits this year than in 2012, but that’s to be expected since I didn’t write nearly as many blog entries. I still enjoy writing the blog, but have been choosier about what I write about these days, both because of the type of work that I do, and because there are a bunch of things brewing that I just can’t write about—yet. I know, I’m such a tease. I’m pretty sure that 2014 will have a number of significant announcements, and many more blog entries.
So today we say good bye to 2013, and tomorrow we’ll welcome 2014. Thank you for stopping by, especially to those of you who have offered support during these last two very difficult years. I hope you all had a great 2013, and I look forward to chatting in the New Year!
I’ve had Jason Aldean’s song Night Train running on repeat in my head today. The video isn’t great—they missed an incredible opportunity to put a story video together—but the song is just working for me. Makes me want to get in my car and just drive.
When you listen to it, turn it way up.
To all my friends and family out there, and to all who have come across this blog because they suffer from Guillain-Barre Syndrome, Merry Christmas! May your day be filled with joy, love and hope!
I’ll be spending the day relaxing, finishing a jigsaw puzzle, watching a movie with the kids… and replacing the kitchen faucet which has decided to spray water across the counter top instead of into the sink.
So on the last day of school before a 16 day Christmas break, it snows half an inch… and school is canceled.
My daughter has been outside since before the sun came up, playing in the snow. My son comes in every few minutes complaining about the cold and that people are throwing snowballs at him.
I have no idea why they would be throwing snowballs at him. Ahem.
The snow has stopped, and the temps are starting to climb. It’s supposed to rain this afternoon, so this will be all gone later today.
I guess it’s fine that they get today off. I mean, it doesn’t snow that often around here. They should enjoy it when they can. But if this had happened on the first day back to school after 16 days off, we’d be having a whole other type of blog post here.
As you might suspect from my last posting, my Guillain Barre Syndrome was the least of my problems in November. Okay, well not the least of my problems, but much lower on my list than hauling around a broken foot.
I did have a follow up with my orthopedist this morning, and had x-rays done of my foot. It is healing, and I can now stop wearing the big air-cast, and fall back to one of the fashionable post-op shoes I’ve collected over the years. Two weeks of that, then I can transition into a stiff-soled regular shoe until the foot is completely healed, probably in another month or so. So, unless I do something truly stupid, I won’t need surgery, and I can drive again. Yay!
Since I was stuck waiting for that bone to heal, I did little to push myself hard this month. As to be expected, I therefore had very few instances where I felt any sort of residual GBS numbness or pain or tingling. I do still experience a few issues with my eyes, mainly if I spend more than 9-10 hours in a day staring at my computer screen, or worse, at my phone. For the most part, however, those symptoms are gone by the time I wake up the next morning. In the worst case, when I’ve pushed too hard all week, I’m usually better by the end of the weekend if I truly take a break from intense screen work.
I’m not ready to call myself completely cured of GBS. But I can live with the symptoms as they are now, though I do hope that with time, my eyesight continues to improve. Who knows, perhaps the eyesight issues are more related to getting older, than to GBS?
Nah. That can’t be it.
That’s pretty much it for this month’s update. I like these short ones. Sometimes not having to talk about GBS is the best sign that I’m not having to think about it on a daily basis. Life is a lot better when that is the case.