The Fatigue Mystery

I had thought for sure I was beginning to gain a handle on this syndrome in figuring out the does, donts, where, when, hows and nevers but its always throwing the infamous curve balls. I have suffered insomnia for months now, dating back to November 2010 & have relied on a mere two or three hours a sleep a night with an almost black tie party extravaganza if I managed to get in a four hour siesta. I have had a few crash periods in between that lasted a day or upwards of five days where I had found it hard to stay awake and my mind & body would crash for 12+ hours, then I would return right back to the insomniac style of life all over again. I altered the way I take my meds in order to see if an earlier consumption would better assist but that isnt the cause. I just deal with the fact that I am only going to sleep when my mind is damn good and ready.
That being said, the miscommunication between mind and body becomes an issue. My body is screaming for sleep, each muscle crying, nerves sending pain signals through the roof to the point that I feel like several teams of angry knife bearing trolls are stabbing at my toes and in between my toes with the force of ten men. Its enough to seriously make you crazy sometimes when you just can't seem to convince your mind that the simplistic art of sleeping may just remedy the situation and allow the pain to disappear for another day.
Sadly, not lucky enough to get the two communicating on the same level, its like an episode of RHONJ sometimes internally in my body. I've got tables flipping, every other word has to be bleeped out and I find that my once fun filled personality is becoming engulfed in painful rage, inability to truly enjoy getting out of the house and taking in all the things that life has to offer. When you are lying in bed and you have to argue with yourself to get up knowing that first step is going to burn and feel like you stepped on a board of tacks, after awhile it does become hard to get up.
My drive to function, very simple, my children. My only true love in life is to see their angelic faces and hold them another day. Yes the pain is still there, sometimes so bad that when they arent looking at me I grit my teeth in pure agony, but when we make eye contact, its all smiles. My son turned 7 today and the first half of the day went well from a physical point of view but as the day progressed, I had become so drained, I wasnt sure I was going to be able to attend his birthday dinner. When it gets that bad, to the point you'd break the heart of your own child by not attending something that means so much to him, you then realize that your quality of life has deminished to its all time low.
What made todays fatigue so much worse though? In the past, it was unknown as to why I was so worn out until a visit with my EP Cardiologist determined I had bradycardia along with hypotension which was causing a very sluggish response from my body. Even though my mind was able to function on little sleep, my body wasnt able to ever recover because blood flow was never quite sufficient enough to endure the strain of the lack of sleep. I was slowing down one facet of my anatomy while the other was getting all charged up. So to remedy that, an increase of salt & caffiene has seemed to not only keep the blood pressure more regulated but also has raised my pulse rate to a more respectful level therefore keeping my bradycardia events at bay since April of 2011. A victory right? Wrong, still get fatigued, well with lack of sleep I could see that happening but today was way beyond the norm and I wasnt experiencing any presyncope events so it was pure fatigue. I was starting to lose the ability to freely move my arms without pain and my neck and shoulders were now effected along with the heaviest feeling I had ever had in my legs. It almost felt as if my gravity was tripled and I was now stuck to my chair. It was awful and the entire time my mind was racing to find the cause. I ran scenario after scenario through my brain trying to figure out what I might have done differently. Did I take the wrong meds? Did I take too many meds? What did I drink or eat? Did I have enough caffiene? Nothing abinormal about my day but I was physically tired beyond belief and 25 minutes from meeting up with others for my sons birthday dinner. I had to force myself to get up and do stuff, each little thing was an effort. I just could not believe I was failing so to speak and although my mind was fully capable of sending the messages to get my shit together, my body wasnt complying. With this syndrome also having the capability of snuffing me out at any given time, its not unusual to start to wonder if this is how its going to feel to head that path of fate "towards the light" so to speak. I dont exactly know what to think at this point but I do know that I have to, yes HAVE TO, get my son to his birthday dinner and do it in a fashion that no one in the world knows how badly I am doing from a physical standpoint.
I got the kids ready and as I lifted my daughter for the 11th time in a row, I knew this simple function was also taking its toll. My upper body was actually trembling under the stress of carrying her little 24lb body. I locked my arms together and had her hug my neck, I didnt want either of them to see me struggling to carry her. I was, without a doubt, far worse then I had ever been and without the catalyst of why, when and where, I had to do what I could to conceal, and make sure at the same time I was functioning in a safe manner for my children.
Again, I double checked pulse rate, all well, evaluated possibility of presyncope, nothing to present any evidence of oncoming episode, just pure muscle fatigue. I am aware that along in the mix of all the wonderful ailments that Dysautonomia has to offer, you can also order CFS (Chronic Fatigue Syndrome) if you act now, for only $19.95, once you have it, NO RETURNS! So that thought went through my mind that my ever changing circumstances at home were manifesting the other charateristics of the syndrome and bringing about all the possibilities that were available to take my body over. I was ecstatic of course, who wouldnt want something else to focus on healthwise, shit, lets bring on some eyebrow cancer next. I'd never get anything thats curable or normal, it has to be exotic and only contractable if I had traveled to Madagascar on the fifth Monday of the seventh month of the year while riding a unicycle backwards in a yellow speedo playing a 1921 right handed banjo and also playing a harmonica to only Guns N Roses songs. (still researching if this is how I contracted ANS in the first place, pretty sure I had a blue speedo on)
I had gotten to the birthday dinner, managed to get home but still I ache to the point of wanting to cry like a girl scout who didnt sell 6,000 boxes of cookies to get her "cookie selling" badge. Then it occurs to me that I decided to bypass an article I had come upon after many, many, many hours of research online for the Dysautonomia. The article had focused on one of the conditions I had already which was the unexplained loss of balance and/or visual disturbances. I have had this issue happen, reoccur etc... since March 2010 so its old news but the other part of the article, the one I should have read, seemed stupid and unrealated so I just ignored but I recall the subject matter. It had detailed severe fatigue symptoms brought on by simplistic brain function such as mathamatical stimulation. I thought it was absurd so I just moved on. Now I kick myself in the ass that I didnt read it because as fate would have it, I was absolutely fine, (when I say fine, meaning my normal aray of pain, annoyances and daily glitches I have learned to live with) but I began to get progressively worse, started to ache, become as I said fatigued beyond belief and what was I doing as all this began to unfold? If you guessed counting all the money I won from the lottery you were close, just missed it by a tiny bit. What I was doing exactly was playing Monopoly with my son. As I had to do more and more math in my head I found it harder and harder to calculate simple math problems in my head and started to get confused to the point I would have to start over again & say everything outloud. (the beginning of the game I was able to do it in my head without saying anything outloud) By this time, as I repeated it outloud, the simplicity of the math was so that my now 7 year old son would answer the problem for me. The longer we played, the worse I had gotten, I was fine when we first sat down but by the time I had gotten to the end of the game, I was completely wrecked. Something about Dysautonomia and its counterparts has an adverse effect on the part of the brain responsible for use in simple math, can you freaking believe that? The result, fatigue. It was in a section that was one of those "not common for everyone" side effects of the syndrome so I need to go back through all the history now and find that article. It was the one and only time I saw it. I can not believe that by solving math problems, I actually caused my body to shut down in a way that its almost as if I had lifted a fleet of cars by hand. I am intrigued but also very alarmed. Whats next, if I sneeze I begin to do pattycake with my shadow on the wall? I mean I realize its a complex syndrome, go it, but complex and F'ing fully beyond ridiculously outrageous are two different things. I have been terrified to scratch my balls as most guys will do, might cause a tail to grow or some other wacky crap.
In closing its best to suggest that even if the absurd seems well beyond whats possible, its worth looking into, you just never know. I have no idea how I even contracted the syndrome in the first place so that mystery unsolved, I shouldnt look at anything as being too messed up or crazy to read into. Reading is knowledge, knowledge is power, power is control and control is not pissing your pants, very simple concept. Thanks for reading.