Thursday, August 14, 2014

It ain't easy being green or sick...

So being sick is obviously a drag.  I know of no one that is ever excited about being sick.  And when I say sick I mean chronically ill.  Its mentally, physically, emotionally, and spiritually DRAINING.  My illness will not go away, there isn't a short-term rehab period, a short recovery phase, it is LIFELONG.  And lets be honest it may kill me.  This isn't a mind frame that one normally has to face in their 30s.  I know of very few who are thinking about their breath throughout the day, very few who face a life altering surgery where your chest is wide open from right to left and which may kill you on the spot, very few signing a living will before that aforementioned surgery, and very few whose choices to have a family or not are taken away.

Its lonely being sick.  Sure I have support which I am grateful for but very few people know of my daily struggle or have witnessed my daily struggle.  My husband (God bless him) has seen the many shades of me.  He gets to deal with my bitchiness regularly which isn't fair to him.  I come home drained and just don't have it in me to be happy and polite.
Its lonely because lets be honest--who wants to deal with the magnitude, the gravity, the REALITY of my situation.  Many people stay safely on the border--looking in and watching cautiously,  some stepping in quickly then back to their life. 
I don't blame them but often wonder why.  Well my therapist gave me some insight today--the American culture doesn't deal well with loneliness.  Look at the many elderly in nursing homes--many have no visitors or their family visits them out of duty.  If we could handle lonely situations we wouldn't feel the need to always be doing something, pack our calendars to the brim, constantly moving.  We hear a sad song, it may pull at our heart strings for a moment--bring up a memory or two but we don't stay in that moment long.  Its too uncomfortable, gotta listen to something upbeat/happy--gotta move on!
Well I can't leave my situation, it is all encompassing.  There isn't a day or even a hour that I'm not reminded of my reality.  And to be frank, IT SUCKS!!!!!!!!!!  Its lonely.  I can't even think about my situation for too long ---its WAY too scary.  I gotta keep moving.  That's what we do--keep moving, otherwise we get lonely.
I know I don't travel my road alone, I'm so thankful for the support I've seen over the last 3 years.  I would be in a much scarier place without it.  But my road is one not well traveled and there are definitely ruts and valleys where I feel alone. One day at a time, one day at a time.

1 comment:

  1. Hi Joyce. I commented once, but I think it was deleted. If this is a duplicate, I apologize.
    I found your blog some time ago, I think through a google search of lung transplant or maybe bronchiectasis and I check in occasionally to see how you are doing.
    This post really struck a cord. I can so relate to the loneliness and isolation of lung disease. Even in the light of a very supportive family, you can still feel very alone in your struggles. The truth is, no matter how loved we are, the healthy folks in our lives can never relate and they just want to go on living life, only we can't always keep up.
    I've found a great deal of comfort in a couple of online support groups on facebook. Mostly I've found them to be a wealth of information from people with similar struggles. I'm uplifted by success stories and at times saddened by the ugly reality that is the nature of end stage lung disease. There are not always happy endings. I don't know if you are a member of any groups like this, but I'd be happy to share the info if you are interested.
    I'm a 46 year old mom/wife/grandmother with genetic idiopathic bronchiectasis. I'm currently being evaluated by Duke in my home state of North Carolina for double lung transplant. My lung function is currently at about 19%.