Almost a year has passed since I’ve last written.  Something that I’ve actually been struggling with whether or not to do, going between the now ever so instant and easy “status updates” that let’s those who actually care to know the basics of my doings and where a bout’s without having to go too deep, and in hiding somewhere in-between the truth of the matter, that I have not yet been willing to express.  

For those who have followed my blog in the past, pretty much know the long list of the things that I have recently encountered that I struggle with, and I seemed to have gotten to the point of not really wanting to talk about it anymore.  I’m tired of struggling, I’m tired of fighting.  I’m tired of talking about struggling.  And along with all of that, I get tired of the pity and sorrow that seems to follow.  I really just want to get on with my life, and if I can’t do that… well, then I decided to stop.  Stopped expressing it outwardly to others at least. 

But with time passing and event after event unfolding, it’s also hard to somehow go on without acknowledging the truth.  I can’t seem to skip over all that has happened, not admitting it as real.  It just doesn’t feel right.  This backwards attempt may benefit no one other than myself through the act of public admittance, and I’m ok with that.  Allow me the moment to indulge… Because it seems as though this is just what I need to do at this point in order for me to go on and finally move forward.

And so we begin with 2009. 

2009 started off really GREAT and was filled with many expectations held by both John and myself.  We had gotten the word that the Epstein Barr Virus was no longer active in my system, and that we could anticipate that my health would now start to improve.  As many of you know, I have been sick for nearly four years now with The Epstine Barr Virus also known as mononucleosis that has resulted in a prolonged case of Chronic Fatigue Syndrome.  Well, this was all VERY GOOD news!  I held hope once again, delicately in my hand glowing bright.  A hope that at times I seemed to have lost.  Although it was only misplaced it appears.

I was once again setting goals, looking towards the future.  Yes, there were still great stressors that leached on, but we both were working hard at searching out the light… because there has GOT to be a light at the end SOMEWHERE.  Even if we had to turn our world around to see it.

We made it through the holidays which were excellent.  We won at the casino on New Year’s Day.  That has got to be a good sign… Right?  We got through The Superbowl with the Steelers victory, and we pushed through the election with an Obama win.  Everything seemed to be in our favor…

And then something happened.

Some time in March I had what can only be described as “an attack.”  It was a physical heat attack of sorts where my body began to overheat with no means of cooling down.  I tried drinking water, eating ice, taking clothes off, showering.  Nothing I did seemed to help cool the increasing heat from my body.  There were a long list of symptoms including dizziness, shaking, a drunkenness with difficulty is speaking, the heat of course that you could feel rising from my skin, the excessive moving of bowels, (there I said it and I do mean “excessive.”) that all led to dehydration.  And of course the panicking to the point where yes, I felt as though I were going to die.  This lasted for several hours until I finally woke John up after going to the bathroom, yet again, and said that I needed to go to the emergency room. 

I should mention that this had happened once before, during the previous summer when we had three days of heat above 100 degrees.  That first time at the ER, they had given me a cold IV and shot me full of ativan.  After I sang almost all of the songs from Across the Universe along with my husband, they sent me home.  They couldn’t find or explain anything. 

That first time, I wrote it off as heat exhaustion or something of the sorts.  I was doing a detox at the time and thought that maybe that had contribute something, along with the excessive days of heat.  Well the second time was in March.  It was a nice day, but it wasn’t hot out by any means…  An IV (without the happy drugs that make me sing) later they dismissed me again, and I wrote it off with a little “Huh? That’s curious” attached at the end.

It happened again a month later in April while John and I were away for a long weekend at the coast.  Third times a charm, right?  I got to ride in an ambulance that time, with John following close behind.  It was interesting and a little creepy.  The unfortunate thing about this occasion was that the hospital didn’t have cold IV’s.  You see, it’s the beach.  Most people came in with hypothermia from being in the ocean, so they really didn’t have a need for cold IV’s.  They needed warm ones.  They gave me two bags of IV, shot me up again with the ativan and sent me home.  This time the heat stayed with me for nearly a week. 

After the third time, I went to see my doctor whose offerings were rehydration packets and my own prescription of ativan to take home with me.  This at least would insure that I have at home what the hospital would give me for ¼ of the cost.  And yes, it helped once again when it happened in June.

Now I need to explain the psychological affects that were building with these crazy attacks.  For whatever reason, I was becoming super sensitive to both the heat and the sun.  Sitting outside in seventy degree weather could spur on an attack.  Being out in the sun for more than ten minutes could do the same.  A restaurant a little warmer than comfortable could do it.  And the attacks came on suddenly and were very hard to regain control of.  Early on, there was no control, what-so-ever.  And the worst part (well besides the scare of dehydration) are the panic attacks that are merely a symptom along with the list of others.  Just one of the many, meaning, I understand what’s going on, I KNOW that I’m not going to die from it after it’s happened so many times before, but the “oh my god here we go again I’m going to die” just comes over you and no amount of logic, breathing or meditating seems to help. 

So my world began to get smaller and smaller.  I was afraid to leave the house without John.  I was afraid to drive long distances by myself.  I was afraid to commit to any friends because I never knew if an attack would happen, when it would happen or where.  There were so many stipulations like, well I can’t go to an event outside in the sun, to a restaurant, or in public in crowds.  I need to be somewhere with an accessible quick bathroom that is somewhat private because once I need it, I’m  probably going to be there for awhile…  Yes, I began to get very phobic.  And no… this was no way to live.  Something that I happened to mention on occasion, well, almost every day.

Not to mention summer was rapidly advancing, and the panic of how I was going to make it through that was unthinkable.  I knew somewhere in me that this was going to be a hot one, and yes, I was indeed going to die.  We finally got air conditioning installed in the house, and I planned on living inside for the duration of the season. 

So what is this that’s going on with my body?  Well, I still don’t know.  I have talked to many, many people, doctors, specialist and healers about what could possibly be causing this.  Along my journey, I once again lost faith in Western Medicine.  As if I had any left to spare. 

Hormonal?  Maybe, but my hormone levels seem to be in check.  Sympathetic nervous system, we think.  But when I went to see a neurologist and after handing over nearly five hundred for that visit, she said to me “I don’t know what’s wrong with you it’s nice to meet you goodbye.”  As if it were one sentence. 

I have also been told that I may be having a sort of spiritual awakening, a Kundalini Experience and a pitta rising as well.  I will accept ANY of theses if you can tell me how to get through it, and if and when it will finally end.  I personally believe that my body is somehow detoxing itself after being sick for so long and this is a way of me being able to cleanse myself from the toxins it has stored over the years.  When you have CFS, you’re not the most active of person, and so I am only assuming that toxins have been building up, and now they want to be released.  But again, what do I know?  At times I feel a lot more than the doctors.  Other moments I feel more clueless than when it all began.  It has subsided over the past few months.  The episodes are not as long and are few and far between.  But the fears planted are still there…

Then this fall was met with the onslaught of illness that hit me starting with the swine flu, followed by a nasty what seemed like a longer than life cold, and ending with some sort of dizzy, nausea bug that I am only now finally getting over.  I have had two really good weeks between mid-October and January that thankfully happened during family visits for the holiday’s.  Another “how am I going to get through this?” that filled my mind.

The surprising thing though, is that I do believe that somehow by me getting the swine flu, because it was a new unfamiliar virus to my system, that my immune system was somehow able to kill both it and the EBV.  Could it be?  And that I may be free from it finally and at last, Amen.  I am not certain.  We are waiting to see, but signs are pointing to this as truth.  My naturopath and I are now working on balancing my immune system with support from various supplements. 

It has been nearly four years since I first got sick.

I have narrowed it down to a sneeze.  A very wet sneeze from a girl, that I even liked, sitting next to me in a very tight-circled lecture.  A snneze that just so happened to land on me.  I remember the moment and thinking “Oh no…”  Back when I was still in school following my dreams.

Four years of my life now passed. 

That dream is now gone.

But yes, many, many others have appeared.

This year that has just passed has been a waiting of sorts.  Like standing on the platform, waiting for the train to take me to some- “where?”  An in-between state, a nothingness, and I look back and ask what was the purpose.  Why?  I still have no idea.  It was by far the worst health related year out of all of the four.  It was terrifying and exhausting.  And I hope with all of my heart, somehow, that it’s over.

I was talking to a close friend of mine a few months ago, and I told her that it was strange for me just how easily that I opened up to her.  I actually told her stuff.  It had surprised me, because at some point I just stopped talking about it too people.  Well, to everyone except my father and John, of course.  But even they only know so much.  It’s a dance that I do between protecting them, and allowing myself to open where I can let go of enough to go on. 

Building walls, going deeper within.

I just got tired of complaining to everyone.  Sometimes it felt as thoughall that I had to talk about was what was going on with my health.  It felt more like excuses to me than anything.  And honestly, I have gotten bored with the subject. 

Although, when I talk about it, as I have here, it really doesn’t seem to come across as complaining as I reread, but more like the telling of a story.  So maybe I just got tired of telling my own story.  It wasn’t THE STORY that I wished to tell.  It wasn’t the self that I recognized reflected in the mirror.  I was strong, after all.  I was capable. “I was” are words written in the past. 

And with so many people reemerging from my life, I didn’t want to have to tell the tale again and again.  I didn’t want the shame that comes or the pity to follow.  I still believe that we all suffer in our own ways.  This is mine.  I will carry my own cross and hopefully grow in strength from it.  But there was something more…

And she said to me, “You don’t want to be the sick girl.”

I realize that she was right. 

I didn’t want that label placed on me.  One that I could somehow remove.

And so I work very hard at not being sick.  I don’t appear sick.  I don’t act sick.  I don’t talk about being sick.  I go where I need to go and work very hard at times to appear normal, healthy, thriving and yes, these days with the extreme anxiety… sane.  But truth be told, I am not as I appear.

I have been cast and my role, for now at least, is “the sick girl.”

And maybe, just maybe… by admitting that and being truthful to myself, maybe I can now begin to heal.