Wednesday, September 29, 2010

Stumbling Along the Path to Exhaustion and Trying to Find My Way Back

I love those rare, fleeting moments when my eyes can look directly into the face of the sun without being seared with light.  This morning, for about 10 seconds, the thick fog lingered between me and the sun and acted as a liaison, almost as if the sun and I were having a secret tryst, as my partner and I drove toward yet another Doctor’s appointment.
This is her third doctor’s appointment in two days.  I had my appointment with a nurse practitioner yesterday.  I’ve had a sore throat for over a month.  Never one to go to a doctor unnecessarily, this was my third time for this.  It turns out that I have Epstein-Barr Virus, which is the virus that causes mono and chronic fatigue.
I can’t remember if I blogged about my absolute bone-weary exhaustion right before I was diagnosed with cancer or not.  After my diagnosis, I just attributed that exhaustion to my body fighting off the cancer.  Now, I’m thinking it may have been EBV.  The blood work shows I’ve had it for quite a while and that it was even more active in the past than it is now.
I went on the CDC website and found out that 95% of American adults have EBV, but most of the time it lies dormant and does no harm.  But, sometimes it flares up and causes mono, or lingers in the system enough to cause chronic fatigue syndrome.  My viral load shows that I have a chronic problem with it.  And here, I’ve been telling people-including myself and my doctors- that Of course I’m tired all the time- I work midnights!  I have, a few times, told the doctors that I was more tired than usual.  This was the first time anyone checked me for mono or EBV (or vitamin B, I'll talk about that in a minute).  It has never occurred to me to go to the doctor for being tired.  I’ve just always dealt with it, I push myself until I get an hour or a day to collapse and sleep the sleep of the dead.  During those extra-tired times, on the nights that I work, I keep switching up what I do to keep me awake and reasonably alert:  read, crosswords, exercise, sudoku puzzles, draw, color, Kakuru puzzles, write in my journal, drink coffee, take vitamin B12, shake my head back and forth, etc.  The cues I look for that show me that it is time to switch activities include:  needing to read the same paragraph over and over in order to try to understand it, blurred vision, slowed breathing, illegible handwriting, forgetfulness, eyes crossing, stomach clenching, brain fogging, slurred speech...When one or more of these things happen, I switch what I do.  Lately, I have been physically tired to the point where exercise seemed impossible, reading has been impossibly frustrating, and my journal entries have started out fine, but ended in an unreadable, incomprehensible babble of scribbles.  Kakuro and coloring seem to be working best for me.  Kakuro uses some math skills and logical thinking, parts of my brain that I don’t use in everyday situations.  (Not to mention that they are really hard, and when I get my mind on finishing one, I get so stubborn that I won’t stop until it’s finished, and that stubbornness keeps me alert and wide awake.)  So, I’ve been doing those and they have worked really well.  Then, on the way home from work in the morning,  I stop at the rest area to sleep.  I tell myself that I’m only going to sleep for 15-20 minutes.  I make sure my car is locked, recline my seat, set the alarm on my cell phone and...hit the snooze and...hit the snooze and...sleep through the alarm.  Then I finally wake, stumble inside to use the bathroom- sometimes brushing my teeth and washing my face helps to get the cobwebs out of my brain enough to drive again, and sometimes, the guy that works there and I talk for a bit.  Then, I get back into the car and sometimes I make it all the way home, and sometimes I pull into the Meijer parking lot, or one of the malls, check to make sure my car is locked, recline my seat, set the alarm on my cell phone and…
So, I’m tired lately.  I’ve been missing church, not writing my blog, not remembering things, not getting housework done (except enough laundry to keep me in clean underwear), not working on training the dogs everyday as I’d committed to do.  Instead, I’ve been sleeping in rest areas, staring like a zombie at the TV because I'm too tired and have been fighting sleep too well, uncomprehending of what is being said, eating whatever Deb feeds me, forgetting words and conversations, and sleeping.  I’ve called in to work twice with this sore throat and exhaustion so bad that I was not safe to drive, let alone work.  I’ve been sanitizing any phones and other surfaces I use at work, thinking I might be contagious, not wanting my co-workers to all come down with sore throats and exhaustion.  But, since I’ve never french-kissed (or even dry kissed) a co-worker (okay, not since I was 18 or 19 working in the campus kitchen), I don’t need to worry about them getting EBV from me.
Not only is my EBV not catchy with casual contact, neither is my extreme vitamin B deficiency.  I seem to be the lowest in B that the nurse practitioner has ever seen, even though I’ve been taking a B complex at least 3 times a week to try to get some energy, and even taking extra B12 most nights that I work (it is supposed to give you extra energy, and on normal nights it does help).  None of it has helped lately with energy.  I even tried one of those disgusting tasting 5 hour energy drink things, which is a combination of caffeine and B vitamins, and it didn’t touch my exhaustion.  Well, my body is either sucking it all down like an old piece of dried wood does with water, or somehow I’m not metabolizing vitamins B for some reason.  That is part of my tiredness as well.  So, for the next 6 weeks or so- I’m supposed to sleep as much as my body wants, take B complex every day, B12 every day, sleep some more, take extra vitamin C, eat properly, sleep some more, get 2 vitamin infusions at the doctor’s office every week, and rest- not work.  (As I am writing this, Deb just gave me a quiz she found in a Diabetic magazine about B12 deficiency.  Turns out that it causes tiredness, forgetfulness, etc.  I have told all of my doctors that I am having memory problems, I have been telling them for the past 3 years, and none of them checked me for b vitamin deficiencies until now.  Turns out that the neurological problems-forgetfulness, confusion, and irritability can all be caused by B12 deficiency, not only that, but without early intervention, these can be permanent!!  I’m a bit mad about this, that no one thought to check this.)
Part of me is relieved to have permission and time to sleep.  Part of me, the bigger part, feels stupid and selfish for taking time off because I am tired.  I feel like I am cheating, and not being fair to my co-workers who will have to cover my shifts.  After all, doesn’t everyone get tired sometimes?  I feel guilty.  And tired.

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