Sometimes this whole thing sucks!

Thought I'd take a minute to permanently get rid of the perception that I'm handling this all so well... because sometimes I'm not!  On the days when I feel pretty well, I go about life as usual and try to live each day to the fullest...but on days when I am feeling lousy, it isn't that way at all.

Somehow I grew up and accepted the belief that being sick was weak and that you could use 'mind over matter" to overcome anything.  People that were sick pretty much scared me, partly because it was a trigger for me and so different than how I would want to be.  I want to be seen as successful, fun, happy, on top of things, loving life, independent, able to handle anything.  What I don't want is to be seen as is weak, or needy, or SICK.  Yet somehow, those are the things that I am encountering in my current journey.  While I know that all of this really just lasts for a "moment" in the eternal scheme of things, this waiting to get sicker and knowing it will happen but not how bad it will get just really sucks...

I can see some positives out of all of it too, and I try to refocus on those things rather than dwelling on the negatives (not that I am always successful at this...far from it).  First, who wants to be so strong and able to handle everything all of the time?  Talk about pressure.  I've had to give up that belief entirely and that isn't such a bad thing.  I've also had to realize that there are some things that I can control but there are a lot of things that I can't that I have to learn to accept.  Some of these things are:

1.  I have limits.  I can't always do everything that I want to-- no matter how much I try to force myself.  Somedays, I just don't want to get out of bed.. and somedays I don't.  I'm glad that I invested in a more comfortable bed and a nicer TV in my bedroom.  

2.  I have an illness, and that doesn't make me weak.  This is the plan for my life right now and in the end, I will come out better for it but that doesn't mean that I have to enjoy every minute.  Of all the illnesses that I could have gotten from lifestyle choices (being so overweight, for example), this one was completely random.  I still have been a little vague about what is causing the liver failure, partly because of stigma... but let me put it all out there.  I got the Hep C virus from blood transfusions that I received when I was 18 years old, about 2 years before they started screening the blood supply for it.  Pretty random really.  I've never engaged in a high risk behavior for this illness in my life and I got it anyway.  Doesn't make it any prettier or better for me than for those who got it thru other means.  It is ugly either way.  I feel badly for many of our clients who have it and are not eligible for transplants because of lifestyle choices.

3.  Sometimes I need help.  Yikes!  That is a hard one to admit.  I've had to learn to ask for help sometimes and have been surprised and touched by those that are willing to help.  It's still difficult to ask now, partly because I know that I will be more sick later on and I don't want to wear people out before I need the help even more.  Funny thing though, as I've accepted help I've noticed that I have become much more aware and empathic towards the needs of others.  I've turned more outward too and that is a good thing.

4.  Secrets don't help.  I've known about the liver problem for 20 years, although doctors weren't talking seriously about transplants until about 2 years ago.  Very few people knew and I really wanted it to stay that way.  About 2 years ago, I started sharing this with some people I trusted-- my boss, more friends, etc but still a pretty small circle.  I just talked about "health problems" to others.  After being hospitalized last summer, I decided to just be open about the whole thing with everyone.... which for those who know me well is completely different from what I would normally do.  And I was scared initially about people's reactions, but there was no need to be.  Everyone has been incredibly kind and understanding.  It amazes me how family and friends have offered to be tested to see if they can become a donor for me.  Wow!  My eyes tear up just thinking about it.  Unfortunately, the transplant gives you a healthy liver but doesn't get rid of the virus and so the virus just gets to work on the new liver but it takes another 20-30 years to get really sick again.  By then I will be old anyway.  They've tried partial organ transplants but with the liver trying to regenerate and grow and the virus trying to destroy it, they weren't successful and people needed new transplants within a few years.

After sharing the biggest secret of my life--the one that made me feel like a leper really-- all of a sudden I felt a lot free-er in so many ways.  Here I am-- a THERAPIST who talks with others about how much energy it takes to keep a secret-- finally trying it and learning to believe it.

So how's that for probably sharing too much and dispelling all myths and perceptions in one post.  But, there you have it....