Up, and Back Down Again

5th Anniversary — Part 2

As the fifth anniversary of my acquired traumatic brain injury approaches, I am finally well enough to focus primarily on regaining muscle tone and losing the weight I gained while convalescing.  In making physical fitness my priority, I have retained a personal trainer, whom I have been working with for approximately two months, roughly two to three times per week.  On Monday, September 10, I had my first session of the week with her, but by Thursday I had my last.

My first notable stumble of this busy fifth anniversary week came on Tuesday, September 11, while I was attempting to ride my bike up a hill…a rather steep hill that was in the end just beyond my ability.  Physical stamina hasn’t happened yet, but I keep working as arduously and as often as I can.  I have only within the past two months made any kind of real progress.  In that time and in the years prior, I have had to start over toward my goal a hundred thousand times.  We really haven’t gotten much bicycling in this season — too many house appointments, too many doctors’ visits, the standard chronic fatigue.

Just the week before we had found a beautiful new place to ride, closer to our home than the paved bike route we usually drove to some fifty-plus miles away.  A lovely state park, with a little lake and lots of smooth blacktop, but far more rolling hills than we are accustomed to tackling.  Once I hit the proverbial physical wall on this unexpected second hill on our bike ride, the rest of the week began quickly to fall apart  — pretty much in keeping with the kind of turmoil that has plagued me throughout this recovery.

Ever since I was finally able to get out of bed since the accident, this is pretty much the way it goes:  I challenge myself cognitively to work my mind, or more often physically to combat the deplorable shape my body has acquired –> I rapidly fatigue –> I suffer debilitating pain and exhaustion –> I ultimately lose all focus, then resolve, and most particularly, emotional armor.  I end up tumbling like a rag-doll–down down down–until I am nothing. Unable to do anything. Well, basically not anything that requires standing or lifting my head, that is.  I can read, I can type, but I even eat with my head low, supine.

I spent all day Wednesday in bed, trying to recover.  It frustrated me, but this truly is progress.  I was wiped out from Monday’s workout and Tuesday’s bike ride.  Nothing unusual about that for me, even though both were what a healthy person would probably consider light exercise.

My recovery from fatigue currently rests at a mere 1-3 days.  There was a time in these mostly miserable past five years that recovery from fatigue was more like 7-10 days.  In fact, there was a long, long stretch of time where there were no good days at all.  That is, once I recovered to the point where I could even mark “productivity,” where I actually had what I characterized as a “good” day.  I remember reporting to the neurologist, “I had one half day this week.” I meant, I had one half day in seven where I could have a conversation (or what passed as one), watch a tv show (although I rarely cared to or stayed interested), or maybe even speak for a few whole hours (like when I returned to my university teaching job, long before I could realize or assert that I just was in no shape to work).

So, this Wednesday’s being a down day was not at all unusual.  I was tired, and I rested and read all day.  By Wednesday night, however, I found myself being hung up on by my college-age daughter.  In this phone call, she was trying to confirm upcoming holiday plans so she could purchase her plane ticket home.  She wanted to spend them at my parents’ as was once tradition, and I just wanted to stay home.  I didn’t care if she came to see me or stayed with her grandparents, I just knew that I wanted to stay home. I couldn’t in the moment understand why she couldn’t see that I am a person, too, with valid needs of my own.  She was frustrated, and obviously sick of the mom I have become (occasionally flat affect, and all), and not the mom who reared her, whom she needs and misses.  Plus, she is a planner.  Her schedule is so full she needs to be organized to function.  I recently retired, partly because I have lost the ability to follow a schedule, and I need to go by how I’m feeling.  This has gotten me in trouble with several people in the past few years, but it’s the way it is now, and I understand, even if they don’t.

The real problem in my family, however, is that I have changed.  I went from being a very active, very productive person, a person you could always count on, someone who always put everyone and everything else first–to a person who seems self-absorbed and sick all the time, checked out and foreign…someone no one really recognizes or likes, and even further still to a person who seems all of a sudden to now know above all what she herself needs—a person who takes care of herself (knowing she really cannot count on anyone for anything, anyway)–and also to a person who often doesn’t feel well enough to ask for what she needs politely, but instead insists:  “I am staying home.”

Again, words say it:  For the past five years, I have largely retreated.  I have been home a lot.

What the brain injury did, in effect, was to destroy nearly all of my social connections, and steal all the patience and polish and maturity I had earned over my adult years. These changes basically left me with the impulsivity, intolerance, and frustration level of an adolescent.  But somehow logic didn’t leave me, or so it seems at least to me…and so I end up arguing, sometimes seemingly making my point in a kind of calculus. What I mean to say is that I’m just not that easy to get along with.  Sometimes.  Certainly more often than I would like.  More often, surely, than others would like.  I hate this.  It costs me a lot of stress and aggravation.  I don’t like conflict at all.  It isn’t good for me on any level, particularly not physical.  Stress exacerbates pain.

Both pain and stress cost me a great deal of sleep.  Sleep that could be healing.

I didn’t sleep well at all after fighting with my daughter over where to celebrate Thanksgiving.  But I still, somehow, pulled myself out of bed and got to the gym in time for my 10 a.m. training session.  I didn’t want to go and I didn’t want to be there, and I was tired and sore, but I went, and I even arrived ten minutes early.


© Debra A. Valentino, all rights reserved.




Please share your thoughts.