THINGS LOST

I thought more about something I put in my last post; that I am unable to put into words what it is like to have this disease.  I suppose if I were able to go on the computer and write while at my worst, and while experiencing the stranger than fiction brain sensations that I encounter, I may be possible to express myself better on paper.  But that is impossible; I am far too ill to do much of anything during these "flare-ups" .  I can barely open my eyes, the vertigo is so severe that often everything goes black.  Any attempt at concentration causes such pain in my brain.  A headache like no other; not a migraine, but actually pain in my brain.  I feel my brain is so swollen it will explode and I can hear and feel fluid inside.  When I open my eyes, my vision can be very blurred and my brain feels like it is spinning inside my skull; motion sickness and terrible nausea almost always follows.  Sometimes the tremors occur inside the skull, other times throughout my body.  It is terrifying and I am sure at the time that I am dying.

It can last for hours, sometimes days; no pattern.  But the triggers are obvious.  Long conversations, loud noises, or competing sounds.  A few minutes in a doctors waiting room can set me off, just hearing the phone ring, the receptionists talking and the television, as low as the volume is, all at once.  My brain becomes confused, over-excited and I am ruined.  My last "quick" run into the grocery store put me back three days.

I can't remember the last time I listened to music.  One more thing taken away from me.  It used to be a big part of my life.  Being the daughter of a professional musician, hanging out in recording studios as a child and eventually playing on stage with the band, music had become part of my soul.

I don't call my friends very often, knowing even passively listening can trigger me.  When I am able to talk, I usually sound fine at the time; they are unaware that an hour later I am down again, in tears and terrified.  And socializing in person, of course is out of the question.  I won't admit how long it has been since my last date.  I was able to go to a movie twice I believe in these past six years.

I recall my "former me".  The person who chased a hot air balloon until it landed, begging to be part of their team.  In return for "crewing" which comprised of a number of duties, I flew high above Lake Tahoe each weekend.  While in Colorado, I walked, ski's over my shoulder, for miles to the mountain and skiied til I was kicked off the slopes; then trekked the long trip back to my dorm in the dark.  It was my passion, and a sport I believed I would enjoy well into my 80's. Kayaking, scuba-diving, hiking....I loved it all.  That was me and I need to remind myself I am still that same person, or am I?

How do I fill these spaces, once filled with joy and now empty?  How do I replace them?  I can no longer read a book, concentrate enough to even attempt a jigsaw puzzle...certainly unable to go anywhere there is noise.  My dear friend, also with Lyme, tells me his daily high point is feeding the ducks.  "They're now my only friends" he tells me.  I feel his loneliness.