The guide to driving your friends and family away.

I have been told that my facebook posts about the realities of living and breathing Chronic and Congenital Lyme Disease are a bit "off-putting" to some (all) because I sound so angry in my posts.  I have been told that people get "tired" of always hearing me gripe about how hard and miserable things are.  I have been told that maybe I "don't need to share so much detail" about what Lyme is doing to my family because it is "upsetting" to people and they "don't know how to respond or how to help me". 

Yes, the ugly truths about people's hardships are hard to hear, they are unpalatable, they do make you feel helpless....but that doesn't mean that they shouldn't be allowed, nay encouraged, to tell their stories, right?  Maybe if I sugar coated the horror of what happening in our lives then it would be acceptable table talk about out loud? 

I am conscious of not dominating conversations with the negativity and trials and tribulations of our current situation.  In fact I get sick of talking about it, thinking about it, breathing it night and day, being tormented in my sleep by it, living it, watching my children live it, watching my husband get more and more exhausted trying to hold us all together and function like a normal human being out in the real world too.  I do make a point when talking to other people to focus on them and theirs and what awesome or mundane things they are doing in their lives.  Yes, it is so nice when someone calls me to ask how we are doing....I can probably count on my one had the times this has happened.  I feel I would be doing a disservice to my children if I didn't use my voice to call for help for them, for me, for our family. 

It is a lonely existance, living with a chronic illness.  I try to put myself in other people's shoes and try to imagine how I would be dealing with someone in my situation, and I can say I honestly don't know.  I know it is selfish to expect people to be thinking about us all the time, but what I don't get is how a lot of our own family will not even ask us how we are doing when they see us.  It is as if this nightmare is not even happening.  It makes me crazy and angry and resentful.  Sometimes I feel so abandoned by the world and wonder why I even keep trying.  I used to be a fun person, or at least not as irritating as I feel like I am now.  I hate the person I am now...I am a shell, a rotting husk stinking of desperation and fear.