September 22nd is National Veteran and Military Suicide Prevention Day

At the risk of Too Much Information (TMI), I'd like to share something that I've never talked about with anyone other than my wife.

Here's the backstory: a few years ago I was diagnosed with Essential Tremors, which is a disorder with hand & feet tremors that resembles a non-fatal form of Parkinson's Disease. I had hoped to retire one day and be able to tinker with electronics or play my array of musical instruments, but now I suddenly found myself in my mid-50s and facing the very real possibility that I might not be able to hold a pencil or a fork in a few years.

I went through all of the stages of grief; at first I was in denial, and then I was viciously angry at God. I kept asking Him, "Why me?" and "Why couldn't you just kill me?" It was humiliating each time I had to ask my wife to help me eat, or when I had to pull off the road and ask my wife to drive because my feet wouldn't do what they were supposed to. It was even more embarrassing when I was at a restaurant with family or friends and I kept missing when I tried to feed myself.

I eventually launched into a major depression, and all of this happened at a time when my job took a major nosedive; I was overworked and had a boss who had no idea who I was or what I did. As each day grew worse than the last, I finally reached the breaking point, and I want no sympathy for this - but I had my note written, I had all my accounts in order, I had all my passwords printed out so my wife wouldn't have to look for anything, and I had a noose all set to go. I'm great at tying nooses; I learned how to tie an ultra-secure noose as a Boy Scout, so I had everything tested and ready in our garage where I knew that nothing was going to fail on me.

I was literally within minutes of stepping into that noose when I was somehow distracted by something; to this day I don't recall what it was, but I stepped away and never stepped back.

I eventually found a doctor who put me on the right medications to manage my tremors, and I found a counselor to help me pass through the final stages of grief - from depression into acceptance. Now I look back at what almost happened and think, "Holy crap - what was I thinking?" But the truth is, when you're that depressed, you can't think. And you don't WANT to think. You just want it to end. In hindsight, I should have sought help sooner: I should have seen the doctor sooner, I should have seen the counselor sooner, and I should have told my wife that despite my day to day appearance, I really wasn't handling my situation.

When I think back on my time in the military, I realize that soldiers are taught to be completely self-sufficient, and I think that makes it hard for veterans to ask for help. But if we veterans are honest with ourselves, we were never completely self-sufficient. In every duty station where I served, I was surrounded by awesome folks who knew exactly where I was at, and we all helped each other. Oh sure, there was the occasional jerk or two in each unit that we couldn't trust, but for the most part - we were surrounded by people who understood all the ups and downs that we were facing.

Now that my situation has changed for the better, I've found a support group for my tremors where I can hear from other people that have gone through what I'm going through, and it really helps. To be honest, that's also why I love a veterans group that I belong to. There are parts of my life that no one outside the fraternity of the Armed Forces will understand, like why I laugh out loud every time I see a yellow bird lying dead outside a window. But all of my fellow veterans get it.

To finish off this post, I'm doing great now - and I've learned to take each day one at a time. I don't mean to make light of anyone's burden, but I look at the following images all the time. The image on the right reminds me that I shouldn't try to do everything alone, and the image on the left reminds me that the same drive and determination that enabled me to endure and do amazing things in my youth is still there, and I can tap into that drive and determination in order to help me make it through the stupid things I face today.

Never-Quit-and-Seek-Help

To sleep, perchance to dream...

I have never had a time in my life where I lived with a schedule that resulted in a traditional, eight hours of sleep. For starters, I am what most people would call a "Night Person." I love staying up late working on this project or that. Adding insult to injury, I am also a workaholic; I have no concept of what a decent work/life balance should look like. (I never have; even when I served in the military I overdid everything.)

However, once I finish my career-oriented tasks for the day, that's when I work on my hobbies. Late nights are my "Me Time," and I love getting involved in something that might take me days or weeks to complete. That being said, I also have Attention Deficit Disorder (ADD), so I rarely finish most of the hobby projects that I begin. (But that's another story for another day.)

Anyway, as someone who has spent their entire life routinely abusing themselves where sleep is concerned, I thought that my life could serve as a warning to others of what they might have in store for their futures if they follow my example of habitual late night activities and poor work/life decisions.

Insomnia

This might seem counter-intuitive, but sometimes I work so much that I am too exhausted to sleep. I drag my sorry self around the house and eventually collapse into bed, but sleep never comes. I am genuinely tired, but I cannot bring myself to fall asleep. After an hour or so, I give up and drag myself back to my desk to continue working.

Another type of insomnia that I battle is caused by a combination of stress, workaholism, and ADD. When these three factors intersect each other in my life, they create a perfect storm of sleepless days and nights. I might lie down now and again, but my brain is constantly racing - I'm thinking of this detail or that, or this deadline or that... I think of a thousand things that I should be doing, and I cannot force my brain to rest.

I once participated in a sleep study (at the request of my doctor). The testing facility had several rooms, and I am convinced that everyone else in the facility was asleep by 10pm at the latest. In my room, however, 2am rolled around and I was still working on my laptop, reading reports from work, and watching a series of documentaries on the TV in my room. I was still wide awake and easily could have been up for a few more hours. The technicians from the sleep study eventually had to come to my room and inform me that if I didn't go to sleep, my entire test would be voided. I regretfully packed up all my things and climbed under the covers, but I still didn't fall asleep until 4am or so.

Sleep Paralysis

This is one of the most-terrifying experiences that you can imagine: you wake up, but you cannot breathe, you cannot speak, and none of your muscles will work. This scenario has happened to me on more occasions than I can remember, and based on what I have read about it, this condition is caused by a combination of stress and sleep deprivation. (Both of which are constant fixtures in my life.) What causes this condition is that our human bodies are paralyzed when we sleep, and this happens in order to prevent us from physically acting out during our dreams. (e.g. Sleepwalking, etc.) However, if you constantly impede your body's attempts to sleep naturally, you can run into a situation where the paralysis does not go away as you awaken, which quickly leads to panic.

As I mentioned earlier, I have lived through this experience more times than I can recall, and my method of breaking out of the situation feels like it takes a great deal of effort - both mentally and physically. When I wake up paralyzed and unbreathing, I immediately feel as though I am suffocating, and I panic. However, I cannot call for help, nor can I move any of my limbs. I have to force myself to think through the panic and concentrate on moving just one finger, and when I am able to do that, I work on a second finger, then a hand, then an arm, and eventually the paralysis begins to fade. All of this takes place in a matter of seconds, but it is a horribly agonizing period of time that seems like several minutes of intense suffering.

Thankfully, my sleep paralysis is not accompanied by hallucinations, but that appears to be a common problem. (See 15 People On Their Experience With The Sleep Paralysis Demon.)

Nightmares/Night Terrors

A direct result of terrible sleep patterns and living with constant stress is that your brain will inevitably take out its frustrations on your sleep time. Sometimes this will simply result in less sleep or poor quality sleep, while at other times you will be tortured by nightmares or night terrors. People with PTSD tend to experience these same sleep disorders, and in my experience - living with constant stress and constantly changing sleep patterns eventually leads to a form of low-scale PTSD.

I used to be plagued with nightmares of falling, or drowning, or being the victim of a heinous crime, or being attacked my monsters. Thankfully, I learned to master Lucid Dreaming, wherein a person who is dreaming becomes aware that they are in a dream, and then learns how to control their dreams. It might sound like make-believe or a hokey fantasy, but Lucid Dreaming has helped me put an end to all of my nightmares. I can now fly in my dreams, I can breathe underwater, and I can pick and choose what gets to stay and what has to leave when I'm dreaming. (I wish I could teach others how to dream lucidly, but the truth is - I'm not sure how I learned to do it myself; all I know is that Lucid Dreaming forever changed my life for the better.)

Narcoleptic Behavior

I do not have actual narcolepsy, and I genuinely feel sorry for those who suffer from that disorder. However, I have - on occasion - experienced some of its symptoms.

For example, I was working on a project a few years ago, wherein someone had promised someone else far too much work for me to complete in far too short a time period. As a result, I was working around the clock for a whole week. I would work for hours until I would suddenly lose consciousness, then I would sleep uncomfortably for a few minutes wherever I was located and in whichever position I collapsed. When I awoke, I would continue to work for several hours until I lost consciousness again, and then I would repeat the whole process. When the project was over, it took me weeks to recover from the abuse, and I had to drop out of a Master's Degree program that I was attending outside of work. (As of today, I have yet to return to that degree program.)

Trust me - that was a horrible way to live.

Inverted Circadian Rhythms

After several intense work projects that have required me to put in a lot of long hours, I have eventually realized that my body clock was completely upside down. I wanted to head off to sleep around 6am, wake up around noon, and work until 6am the next day. Believe it or not, I can thrive and be extremely productive with that work schedule. The trouble with this scenario is that people keep scheduling meetings at 9am (or earlier), so even if I head off to bed around 6am, I'm still getting up in a couple hours to go back to work.

Sleep-Deprived Hallucinations

Thankfully I have not experienced this situation recently, but when I stay up for three days or more, I begin to hallucinate.

A story that I occasionally tell dates back to a time in the military when I was required to be awake for more than four days. After I had been up for around 90-100 hours, I was driving a HMMWV down the German autobahn with a friend in the passenger seat. As I looked at the road in front of me, I asked my friend, "Do you see dogs all over the road?" He replied, "No... maybe you should let me drive." We pulled over and changed seats, then we got back on the road. When we arrived at our destination, I managed to get two hours of sleep, then I went back to work.

There have been a few other times that I have suffered from sleep-deprived hallucinations, but that story was the worst.

All Of The Above

When working on a few intense projects, I have sometimes experienced all of the conditions that I listed earlier at the same time. Needless to say, this is awful when it happens. I quickly feel out of control, and utterly helpless to rectify the situation. On occasion I have gone to see my doctor, who prescribes something that will knock me out at night and force my body back onto a 'normal' sleep schedule, but I hate it. I feel as though I am losing half my life unless I can stay up until 2am or 4am. When I fall asleep at 10pm, I have no time for hobbies; I lose my precious "Me Time," and I sink into depression. So even though I can be forced through medication into a traditional sleep pattern, I will quickly fall back into a "Night Owl" schedule as soon as I am done with my medication.

In Closing

It's after 4am. I should probably head off to bed soon.

Winking smile


ADDITIONAL THOUGHT: I have written in other blogs that I suffer with a disorder called Essential Tremor, which is exacerbated by both stress and a lack of sleep. In other words, my chosen lifestyle contributes to my unwelcome tremors. However, one question has recently occurred to me: my lifestyle currently contributes to my condition, but did my lifestyle originally cause my condition? I may never know the answer to that question, but it's something to think about.

Burning the Candle at Both Ends

I tend to work late. A lot. Most of the time, in fact. I have done so my whole life - even during my years in the Army; despite being required to show up for formation around 6am every morning, (and therefore rolling out of bed at 5am), I still stayed up until 2am almost every night. It's simply the way that my brain is wired, I guess. To be honest - it often feels as though I'm living two lives at once, although I know of no other way to live.

That being said, it's not healthy. And I know that. I have written blogs about my experiences with Essential Tremors, and a lack of sleep makes my struggles with that disease so much worse. And yet, night after night I find myself back at my computer slogging through another list of issues that I feel I should have resolved a few days earlier. I just cannot seem to turn my brain on and off according to some other schedule - even if that schedule is being dictated by the rotation of the planet.

Out of frustration with my personal dilemma, I penned the following:

If you burn a candle at both ends
To slave throughout the night
It illuminates your toils
To your struggles brief respite

But its glow is a deception 
And does not dilute your plight
Its candescence will soon wither
As shadows reclaim their right

Two flames convey no solace 
For despite their pretty sight
Candles last for half as long
When they
burn with twice the light

burning-candle-both-ends


(H/T Edna St. Vincent Millay)

When Essential Tremors Take Over

It has been a little over a year since I was diagnosed with Essential Tremor, and though my symptoms have been dramatically reduced by faithfully taking my daily medications, I still have my good days and bad days. In order to help prevent additional symptoms from occurring, I have tried to change the way that I live my life by doing what I can to reduce the stress in my life, and for the first time in my life I try make sure that I get plenty of sleep. (I have been the consummate "Night Person" for most of my life, so having a "normal" amount of sleep is a foreign concept to me.)

That being said, I have recently noticed an interesting development in my Essential Tremor symptoms: my tremors have seemed to take over in several unexpected ways. Here is what I mean by that: Essential Tremors are "action related" tremors. meaning that tremors develop when I am trying to complete a task, and I have mentioned in previous blogs that tremors have been especially annoying when I am trying to eat or play a musical instrument.

The way that my usual tremors have been manifesting themselves is that I begin an action, and some sort of action continues after my brain has told my body to stop moving. This often happens when I am typing on a computer, or using a mouse, or playing guitar, or turning pages in a book, or some other common action that requires fine motor skills. So the basic flow of events is for a conscious action to take place, followed by an unconscious action in the form of tremors.

But with that in mind, there have been several unanticipated situations where tremors have recently emerged, and here are just a few examples: cold chills, yawning, and reactions to loud noises. Believe it or not, several times over the past few months those trivial actions have been enough for tremors to kick in.

Have you ever had a cold chill? Of course you have; your body shakes for a moment and then the cold chill is over. But for me, I often continue to shake or cringe painfully for a few additional moments. For all intents and purposes, my tremors have amplified my cold chills, so on cold days I find myself getting headaches from the number of shaking episodes that I encounter, and my muscles are sore by the end of the day as I try to flex my muscles to combat the unnecessary reactions. Yawning has had a similar effect; sometimes my hands will shake while I yawn, and recently my hands have continued to shake after I have ceased yawning.

Although I have to say, suffering from tremors when reacting to loud noises has completely caught me off guard. I was listening to a public speaker earlier today, and the sound guy had the speaker's volume up a little too high. As a result, I would cringe a little whenever the speaker was unnecessarily emphatic while making a point. However, my tremors would take over after I cringed, and I would react like I had just suffered a cold chill; my muscles would painfully contract involuntarily, which started to give me a headache.

All of this is to say, these new developments in my Essential Tremor symptoms were completely unexpected. I had presumed that I would continue to have problems when eating, typing, or playing guitar. But cold chills? Yawning? Loud noises? Seriously???

What a pain in the neck. (Literally.)


PS - I made hundreds of typing mistakes while writing this blog. Unfortunately, this appears to have been one of my bad days for tremors.

Sad smile

Good Days and Bad Days

It’s been a few months since I was diagnosed with Essential Tremor, and as I have mentioned in other blog posts, I have good days and I have bad days. I also mentioned that – thanks to modern medicine – my good days usually outnumber the bad days. But that being said, today was a bad day, and at the risk of regaling you with “Too Much Information,” I thought that I would take a moment to explain what that’s like.

Throughout the day, dozens of seemingly-trivial tasks were made difficult by miniscule tremors that caught me completely off guard. In each occasion, either my fingers would tremble, or my entire hand would tremble. To anyone nearby it might seem as if nothing was happening, but each instance was terribly frustrating for me.

Here is one example from earlier this evening: my wife and I were standing in our kitchen, and I held up a jar of salsa to dip a chip into it. But when I turned the jar on its side so that it was parallel to the ground, my hand started to tremble so badly that I could barely hold the jar. I certainly couldn’t be trusted to try dipping a chip into the jar, so I quickly set it down. I attempted the activity again – with the same result. I looked at my wife and chuckled helplessly, but I usually only get tremors in one hand, so I thought that I would just change hands to work around the problem. However, I soon discovered that my other hand yielded the same outcome – my hands were simply shaking too badly to be reliable.

I was briefly annoyed at my own inability to accomplish this ridiculously-simple task, when I thought of a workaround: I could hold the jar on the kitchen counter and simply lean it on its side. This worked brilliantly, and it reveals a lifestyle behavior that I am having to employ more and more commonly these days: I use something else for stability.

Quite often I find myself running into situations where my hands are shaking, and even though I mentioned earlier that my physical dilemmas are probably imperceptible to those around me, I cannot help but feel embarrassed by my circumstances – either by my hands shaking or by my inability to do something simple. However, I increasingly find myself working around the problem by leaning my hands against something else for stability; occasionally I will quickly push my hands down onto a table when I find that cannot hold a fork or spoon steady while eating, and other times I will pull my arms to my chest so that I can complete a task with a relative degree of stability. These situations are very frustrating to experience, but I am doing my best to cope with them and find workarounds when possible.

Another annoyance that I have discovered is how these micro-tremors in my hands seem to sap my strength. The tremors are not actually making my hands weaker, but it seems that way because my fingers shake as I try to use them, and as a result I cannot accomplish my intended activity. (If you’ve ever had your hands shake because your blood sugar was crashing, it feels a lot like that.)

Here’s a case in point from earlier today: I received a DVD from Netflix in the mail, and when I picked it up, a quick set of micro-tremors in my fingers made me lose my grip on the envelope and it went sailing through the air. This happened a couple more times, and when I finally managed to force my way through my symptoms and I had a firm grip on the package, the tremors made it impossible to slide my fingers through the seal on the envelope and open it. (That’s when I decided that it was time to go find a set of scissors...)

So this is what my life is like on bad days: I find myself plagued with what seems like a never-ending stream of tiny tremors that are making average, day-to-day activities far more difficult than before. But I am attempting to keep my spirits high as I soldier through my occasional predicaments, and whenever possible I am trying to find workarounds for my setbacks.

(One final note: you wouldn’t believe the number of typos that tremors caused while writing this blog.)

Learning to Cope with Essential Tremor

Today I couldn't open a plastic package containing a cheese stick. It was such a silly little task, and yet I couldn't manage to do it. My fingers kept going to the correct places, but then they'd shake uncontrollably and I couldn't pull open the packaging.

At first I started to grow frustrated, but then - much to my own amazement - I found myself spontaneously laughing about the situation. As I thought about my petty predicament, I realized that there are three ways that I could react to my ever-changing, day-to-day reality:

  • Cry about the situation
  • Scream about the situation
  • Laugh about the situation

If I allowed the frustration to take over and rule my life, I could easily see myself devolving into a blubbering pile of self-pity. Or if I demanded that God needed to answer why he was making me suffer, I could just as easily see myself filling with rage every time my hands don't do what they're told.

However, in this instance I simply realized that it was just a silly little task, and there was no reason to let stronger and useless emotions prevail. While there was nothing that I could do about my hands, I could try to figure a way to work around my physical difficulties. And if that didn't work, I could easily walk into the next room and ask my wife for help.

In the not-too-distant future, I will undoubtedly find myself having to ask for help a lot more than I would ever want to do. Like everyone, I have my pride, and asking for help just seems so... weak. But I cannot escape the fact that I will need help, and I will have to learn to set my personal pride aside and ask for assistance. Even if I'm simply trying to open a stupid cheese stick package.

Why is a Disease Called Essential Tremor?

Today I found out that I have a disease called "Essential Tremor," and what I want to know is: who the heck names a disease with "Essential" as part of the title? There is nothing about this disease that seems essential. A much better name would be something like "extremely-annoying shaky limb disease." Nevertheless, I have a deeply-disturbing feeling that nothing will ever the same.

Actually, I've known for months that something was wrong, but I didn't have a definitive answer as to what that was until now, so my wife and I chose to keep quiet about it. Knowing for certain helps, though; not just because I have a name to assign to the symptoms that I have been experiencing, but also to know that I don't have something far worse like Parkinson's Disease, which is fatal. (Note: The Essential Tremor page on the Mayo Clinic website has a great breakdown of the symptom differences between these two diseases.)

I first started experiencing symptoms well over a year ago when I noticed that one of my legs would start to shake. Sometimes my right leg would shake while driving - just enough to be annoying, although occasionally enough for me to ask my wife to drive. At other times one of my legs would shake while standing, and occasionally one of my feet would shake while supporting my balance as I was seated on a stool in our breakfast nook or when performing at church. However, over time my fingers started to shake, too. Sometimes my finger muscles would fire on their own and pull inward into my palm; on one such occasion the thumb on my right hand would pull inward every 30 seconds for almost a week. I soon discovered that if I shook my hands, they would continue to shake on their own, and tasks like pouring liquid from a bottle might result in uncontrolled shaking. In a few episodes, I would be performing a repetitive action such as typing on a computer keyboard or tapping my foot, but when I would mentally signal whichever limb to stop moving, the action continued on its own, and all I could do was watch in amazement as my extremities seemed to have a life of their own. As anyone can imagine, between typing on a computer for a living and playing various musical instruments as a hobby, I am typically extremely aware of exactly what my fingers are doing, and you cannot imagine how terrifying it was to watch my fingers simply quit responding correctly while playing classical guitar or some other delicate task. Needless to say, as my symptoms increased in both frequency and severity, my emotions quickly moved from amusement to confusion to concern and then alarm, and my wife progressed through many of those emotions as well as she witnessed my rapid decline during the first half of this year.

I started a diary of my symptoms earlier this year, and I had hundreds of episodes documented by August when I was finally able to see a neurologist who specializes in movement disorders. That being said, my neurologist quickly dispelled any fears of Parkinson's Disease and he prescribed medication for Essential Tremor, to which I have been responding rather well. There are some side effects, though, and a common effect is drowsiness. This led to a brief work-related experiment recently, where I was off my medications for a week or two due to long hours and a heavy work schedule; I couldn't afford the luxury of being tired, so I simply stopped taking my medication. As expected, my symptoms quickly returned. However, when I restarted the medication my symptoms abated, so I feel pretty confident about my current course of treatment. That being said, stress exacerbates my condition, so I've had to have a talk with my boss about changing what I do; we'll see how that goes in the months ahead. (Microsoft isn't known for being a stress-free environment.)

So what does all this mean? For now, it means that when I behave myself and I stay on my medication, I am usually symptom-free. I have good days, and I have bad days - but thankfully the good days far outweigh the bad, and even when I have a bad day, it's nowhere near as bad as when I wasn't on medication. Occasionally I'll be playing something intricate on the guitar and it simply falls apart; sadly, I'm learning to live with that as a part of my new reality. However, I try to be an optimist, so I told my wife that I have an unexpected benefit from all of this: whenever I play something incorrectly on the guitar now, I can blame it on a tremor, and no one will ever know if I'm telling the truth or if I just suck at the guitar. ;-)