Tuesday, August 12, 2014

It has been a long couple of weeks

In our day to day lives the rate at which time flows is a constant and there are of course exceptions to this, the last half hour of a workday, the last five minutes of a school day, the first dinner with your girlfriend's parents, etc.

Things have been bad the last couple of weeks.  It is hard to describe what I am going through to someone who has not had the same experience.  A quick run down would be fatigue, pain, shortness of breath, lack of mobility, brain damage (various kinds that I do not feel like listing), my eyelashes are falling out, bleeding from random skin lesions, vertigo and then I will say my three favorite words, blah blah blah (there are a lot more things but I am tired of listing in general).  Any one of these items I could ignore or at worst I could probably tolerate them on a one on one basis.

Together they are greater than the some of their parts and it is not like you just add them together, it is exponential, in unknowable, like what happens when you approach the asymptote as you head towards infinity.  The experience becomes indescribable.  Most of the last two days were spent sleeping and sitting on the bed.  When I would sit on the bed I would think to myself I should move, if I could get to the shower and then to my chair I could be clean and then I could interact with people even if it is just through virtual means, but I still don't move and I am really not thinking.

I sit on the bed and I am surrounded by the oblivion that the chaos of my symptoms create.  Now that sentence was going to be the intro to something but man in my present state that seems like a really cool sentence, I am not saying it is a cool sentence I am just saying that in my present state it seems like a cool sentence.  That sentence was cool but it still lacks the ability to convey what it is like.  I glance over at the chest of drawers and these drawers are moving horizontally away from each other and I get sick to my stomach.  If it did not make me want to throw up it would be like a moving Escher drawing but it does make me sick and I still sit on the bed.

My sister came over a few days ago because I needed to sign some documents for my dad's estate.  I did get up from the bed but I skipped the shower, had my wife help me get dressed and I took my place on my sick throne.  She comes over and we are chit chatting and she tells me I do not look good and asks if it is pain?  It is hard to answer these questions but in the short answer if it was just pain I would still have a driver's license, I would still be working and I would still be doing some other more intimate things that I shant discuss here, well at least not in this post, if I really want to help people and have them relate to my experience a post on sex or the lack there of must be addressed at some point just not today.

Back to today's topic it is so hard to talk with someone that has no frame of reference.  I remember when I was first diagnosed I had symptoms but I powered through and I would go on to internet support groups and read posts from these people that lamented that they could no longer work and I would think to myself that they were weak and if they would just pick themselves up by their bootstraps and get moving they would be okay, I never thought they would be good but I thought they could be okay.  Fast forward four, geeze I think almost five years now from my diagnosis and I humbled and ashamed to think I blithely told them that studies have shown if you are just able to get up and exercise your symptoms would improve.  I ask forgiveness and realize now that I was just kicking people when they were down.

I have some great friends that come by and visit me and my spirits are always raised and smiles swim across my face from the love and companionship they bring when they visit.  The friends that I have know me and it is great to be known.  My family has never been close and we as a family have had it pretty rough and this goes out from my immediate family and includes aunts and uncles and cousins and such and I know that when some of my family comes over they look at me and think he should just pull himself up by his bootstraps and just get up and nothing I can say will make them understand and the only way they could understand is if they shared the experience.  My family and I are not close but that does not mean we do not care about each other and my parting thought is I hope my family never understands.



FOOTNOTE:  Well not really, what I am adding here is that my friends and I have trust and this flows from knowing each other well.  Family and I not so trusting and mainly because we do not know each other well..  It is hard when someone that you have not spoken to in years asks to trust them or even someone that you talk to once or twice a year, it is hard to trust them as well.