Monday, April 5, 2010

Between the Lines

I was at the library last month and came across a book about Lyme disease.  Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment by Denise Lang.  Unfortunately, I don't really need a book to tell me how to cope with this illness.  I've been coping for twenty-five years.  I am a "master coper". It's rare though to find a book about Lyme at the library though so I checked it out.  It just pretty much reiterates everything I already knew, and I didn't really expect to find anything in it new or shocking.  Still, seeing some of it written down has been a bit disconcerting.

In case you didn't know, I believe that I got Lyme when I was ten.  I wasn't diagnosed however until approximately 2 years ago.  This is not unusual among Lyme sufferers as the disease can lay dormant until triggered by a poor immune system, stress or some unidentifiable cause.  My story is similar to a lot of people with chronic Lyme.  I had a mystery illness that looked like the flu.  Blood tests showed nothing.  I just didn't quite get better.  I wanted to sleep all the time which is not really normal for a ten year old.  Over the next couple years I had a hip infection, shin splints, tendonitis in my ankle and knee pain. I also was depressed. I didn't know that it was depression though. The first time I decided I wanted to kill myself I was fourteen years old...twenty-five years ago.  My physical health plummeted after the birth of my son, seven years ago.  My immune system had been coping pretty well for as long as it could, if you want to call being suicidal coping.  I am still alive, so there's THAT.

Under a sub-chapter labeled Zeroing in on the Psychological Aspects there is a list of the psychological symptoms of Lyme based on the results of a nationally distributed survey of treatment experiences.  This is the list:
  • Major depression
  • Extreme fatigue
  • Emotional instability (crying easily)
  • Increased irritability and mood swings
  • Sensitivity to light
  • Sleep disturbances (insomnia; too much sleep)
  • Getting lost in familiar places
  • Dyslexia-type reversals
  • Significant loss of libido
  • Night terrors
  • Panic attacks
  • Ferocious nightmares
  • Suicidal thoughts
  • Mental fog
  • Disorientation
  • Feelings of rage
  • Abnormalities of taste
  • Abnormalities of smell
  • Heightened sensitivity to vibrations and noise
  • Depersonalization
  • Spatial problems
  • Appetite changes (bulimia, anorexia)
The secondary psychological problems are listed as:
  • feelings of inadequacy
  • low self-esteem
  • bitterness
  • guilt
  • alienation
  • doubting one's sanity (feeling as though you are losing your mind)
Dr. Brian Fallon, an NIH fellow with the New York State Psychiatric Institute at Columbia University in New York City, has intensely studied the psychiatric aspects of Lyme disease.  He explains the experience of Lyme as such that a patient will have unusual symptoms to the point of being disbelieved by doctors and family and finally disbelieving him- or herself.  Because the disease follows a waxing and waning course, Lyme sufferers can't predict how they're going to feel the next day, next month, or next year.  "Family, friends and schools say, 'Why are you okay one day and not the next?'  Add to this that many patients have negative blood tests so there may be uncertainty of a diagnosis, and then you have fear -- fear of losing one's job, fear of losing health, and fear of losing the support of family and friends who may be supportive during the first month of the illness, but when this goes on and on, friends and family may get pretty tired of it."

Reading this made me so sad.  The "secondary psychological problems" are as crappy as the primary. What if I had had this information twenty-five years ago?  What if I didn't spend years wondering what was wrong with me and having misdiagnosis after misdiagnosis?  Putting yourself in the center of a circle there are 360 degrees of possibilities in which way you can choose to go.  My path was chosen for me.   It's best not to wonder what if.  I know now that I can choose my own direction.  Lyme and uncertainty no longer choose it for me. 

Still...I'm not sure if I can find the words that accurately describe how much I want to pick up the past me and give her a hug.  She didn't think she'd live to be eighteen...or twenty-one, and she did.  Didn't really think she'd make it to thirty, and she did.  She didn't love herself and could barely take care of herself.  But she kept getting up everyday and going, and it sucked.  Now she is here with me, and I can take care of her because I have empathy.  I have so much character I can lift her up and help her forgive the world, the Universe and herself.  I can help her get past the "what if", because that's not who we are.  We are the "what is".  As crazy as it sounds, I wouldn't have it any other way.

Oh, it's true.  The Universe has totally been winking at me the past few weeks.  Instead of a plethora of physical or mental symptoms I have been beset by the hurdles and pitfalls of everyday.  I replaced the thermostat only to realize that it was not the problem.  The furnace went out...for good.  I broke my toe and some mystery bones in my foot, and continue to have mystery swelling and pain.  I was overdrawn. I didn't get the child support we so desperately need even though it is being dangled in my face with back and forth emails to Australia every day.  Easter was less this year than I hoped for Monkey. I don't even want to mention the gas bill.  (Jesus, Mary and Joseph!) My mom's GPS was stolen out of my car.  I hit my mom's car in the driveway (AGAIN!  Damn it that woman can't park! Ummm...sorry, Mom!)  I stepped in dog poop.  FRESH DOG POOP.  Everyday it seems like the Universe is just throwing enough bullshit in my way to confound me.  It's like someone has stirred the pot.  I guess that someone is me.

I keep wondering what it is that I am supposed to do.  I must have missed something.  The Universe is shouting for me to PAY ATTENTION!  I am trying to make peace with everything.  The sadness of what has come before to the potential joy that lays ahead.  I am trying to fogive Monkey's dad for being such a douchebag...but it is hard when he's such a DOUCHEBAG. I'm trying to do the best for Monkey every second of everyday.  I am trying to live with integrity in all things.  I've cleaned the closets, cleaned out my email box and cleaned up the DVR.  Next up, dancing around naked and lighting things on fire.  (Now the Universe has kindly told me that an error occured while saving.  REALLY?  REALLY?)

So, to wrap this all up in a nice little package...I'm still surviving.  It's Spring finally and it appears that I too will be reborn (or some such similar thing) with the trees and the flowers.  Things are moving forward.  When the water settles I am hoping things will be crystal clear. Look for me at 180 degrees.

The moment one definitely commits oneself, then Providence moves as well.  All sorts of things occur to help one that would never have otherwise occured.  A stream of events issues from the decision, raising in one's favor all manner of unforseen accidents, meetings and material assistance that no one could have dreamed would come their way.  Whatever you can do or dream you can do, begin it.  Boldness has genius, power and magic in it.  Begin it now.    ~Goethe