Using a Foghorn on my Brain

When an event happens to the brain which is out of the ordinary, the effects are never in isolation.  The brain is essential to lots of things which perpetuate life-- stuff like throwing up, waking up, and growing up.  Without a functional brain stem, a newborn will not live more than a few hours.  The brain is the thing that informs us when we are in pain, when we are hungry, when we are tired, who we are, and even to some extent how we move.

Since my motor vehicle accident which began my journey with traumatic brain injury, I have acquired much anecdotal evidence [not based on research, ergo not admissible in court] that there may be some casual relationship between fibromyalgia and car accidents.  Unfortunately, some number of folks with fibro may be drug-seeking or perceived of as drug-seeking.  And some percentage of medical professionals tend to view fibro as something that is made-up because they don't quite know how to treat it yet.  One thing is for sure-- at least with my fibro which I do not treat with any drugs whatsoever-- movement helps.  The more I move, the better I feel.  

I didn't know that I had fibro.  I was first diagnosed with it a couple of years after my accident.  The pain doc called it "trigger points."  I certainly had them.  I refused all drugs for it so he sent me to pool therapy.  Pool therapy was the best thing that could have happened to me.  The pain melted in the warm salt water.  While in the pool, I did my assigned physical therapy exercises, walked on an underwater treadmill, and got to work on fear of falling due to the objective vertigo.  Many of the folks in the pool with me also had fibro.  I didn't know that I had it.  The anesthesiologist said they were "trigger points."  I couldn't relate to the fibro sufferers who complained about the pain and the fatigue and the ineffectiveness of the drugs they were grudgingly being prescribed.  It wasn't until I was discharged from pool therapy that I found something out.

The guy who was discharging me wrote down that I had fibro on my form.  "I don't have fibro," I asserted.  We argued.  "Trigger points are a symptom of fibro," he told me.  Crap.  I didn't really believe him.  I went back to the pain doc with the new [to me] information.  "Fibro is a lifestyle," the pain doc told me.  "You aren't drug-seeking."  Even now, I tend to use the word "trigger points" and "fibro" interchangeably.  

I am fatigued.  I no longer have the sleep apnea.  [I read in a few places that 50% of t.b.i.-ers have sleep apnea.  So that is something that we should be screened for].  I used the c-pap for around 18 months and lost some weight and I have been medically cleared as no longer having it.  The c-pap machine took away the feeling that I was sleep-walking through life.  Yet, there are times when I do have brain fog or fibro-fog.  

This brain fog is an altered state in which it takes more of an effort for me to think clearly-- more than usual.  I do not trust myself to go places where I might have to be vigilant or more alert than usual.  Because of the somewhat unpredictability of the brain fog, I refuse to work with machinery that can cause serious injury if I lose concentration.  Brain fog sucks but not knowing about it would suck more.

There are things that I do daily, cognitive things, which help me keep my brain Briella on her toes.  She is not such a well-oiled machine anymore.  The brain injury has robbed me of my ability to multi-task and replaced it with something that the shrink refers to as high distractibility.  In my quest for continuous cognitive improvement, I force myself to make new connections in my head about the stuff I think about and experience.

Observing the birds in my yard and studying their details helps.  I can identify some birds by their song, some by their flight pattern, some by their behavior.  Puzzles help.  I play a lot of puzzle type games on the computer.  I also do search-a-words, missing objects, number puzzles, and logic puzzles.  Learning a language helps.  I review my Spanish constantly and I have also picked up random bits of Portuguese and Tagalog.  Reading helps [especially now that I have an e-reader without with reading used to put me to sleep after a half-hour].  I read all kinds of books now.  At first I wasn't able to read the fantasy books I used to enjoy but now I can.  My reading tastes did change.  I read more factual and technical stuff now than I ever did in my life.  Music helps.  Classical in particular to my way of thinking due to its' complexity.  Immediately after the accident, I began insisting that the classical music be left on all night.  With tears if the mate tried to turn it off.  Any music helps though.  It's the rhythm and the dancing and the patterns and the observations that have kept Briella away from crashing into the rocks of total brain melt throughout the last almost decade post-accident.

One thing I do know and I wish to be clear about this:  I don't know how the severity of my fibro compares with the severity of anyone else's fibro.  Some folks very well may find themselves too fatigued to move out of bed without some kind of pain relief in a pill form.  If you have fibro, please do not construe my words to mean that I am lording it over you because I can function without fibro drugs.  Mine may be milder than yours.  Or perhaps I am able to block out pain better than most people can.  At any rate, for now I just keep moving.  And that is working for me today.

There is a balance between keeping my brain sufficiently challenged and getting the rest that I need.  My need for sleep has increased since the accident.  If I do not nap in the afternoon, I am falling asleep over dinner.  Yeah, I sleep more than eight hours a day.  More than ten if I want to feel like a human being instead of like a tired and battered human being.  But remaining stationary can hurt me too.  So I get dressed.  I take the happy dog for walks, whether I want to go or not.  I force my brain to think.  And in spite of the crap that I face due to my brain damage on a daily basis, I continue to live.

sapphoq healing t.b.i.   

Fatigue and Fog



     I lost a bunch of weight and have kept it off for a year now.  With the weight loss, my sleep apnea receded.  Unfortunately the fog and fatigue from my fibromyalgia (which I didn't have before the accident that gave me my traumatic brain injury) remains.  So although I am no longer sleep-walking through life, I just don't have the energy that I used to.  On top of that, I have various aches or trigger points which seem to be diagnostic of the fibro.

     Unlike some unknown to me percentage of folks with fibro who treat it with prescribed drugs, I take no drugs for my fibro.  I deal with mine through a combination of exercise and extra rest.  There are days when I force myself to get up out of bed.  There are days when I suddenly have to take a nap.  And there are a few days where nothing much at all gets done.

     The brain fog I combat by the little cognitive games I find on the net-- use your search engine and type in "brain games" if you want to try them-- which are designed for kids but do force me to think in a logical manner.  I also do research for a few of my blogs as well as sudoku.  From time to time when I get stuck on a problem, I ask myself what a logical person would do.  If I cannot come up with any thoughts on that one, I call up a logical person and ask them for ideas.

     One of the things that I have learned throughout my brain injury is that there are times when I have to say "enough."  When there are events in life which yield more stress, then I have to cut back someway somehow somewhere so I don't get all twittified.  An example is that my list of daily todos has gotten shorter over necessity.  Another example is that when I feel burned out, I know that is not the time to volunteer to help other folks.  The energy just isn't there.  When I take on too much, I pay for it.  I hung up my superman cape some years ago.  After my brain injury, I kicked it to the curb.

     If I don't take care of myself, then I cannot be of service to others.  If I say yes to every little request that comes along, then I get fatigued and brain dead.  If I never say no, then my yeses won't mean anything.

     I suppose some folks learn all of this without having had a brain injury.  I was a go-getter who kept going long beyond any reasonable person would have gone.  Keeping my health as my first priority means I can no longer live the way that I used to.

sapphoq healing tbi

BRAIN FOG 4/2/07

While surfing around Medscape, I found a reference to this website about Post-Polio Sequelae:
http://postpolioinfo.com/PostPolio/
The open letter to physicians is worth reading.

Along the left-hand side are tabs, one of which will take you to the library.
The library hosts links to a variety of articles, some of which deal with similarities found between the fatigue that a Post-Polio Sequelae patient experiences and the fatigue associated with Chronic Fatigue Syndrome. Also mentioned in the articles is the brain fog which I have become very well-acquainted with in my own struggle with fibro courtesy of traumatic brain injury.

Although the articles are not specifically written about T.B.I., they are worth reading. Folks who have sleeping problems or fibro not associated with t.b.i. will also find a visit to the site worthwhile.

sapphoq healing tbi