Thursday, February 18, 2010

Life With a Side of Illness or Illness With a Side of Life?

Illness has everything to do with my entire life.

I could lie.  I could say that there are moments that life is a breeze, that I get up and go about my day without any interference or reflection on the fact that I am sick.  That is what I think people often want me to say.  Alas, this is not the case.

I have no idea when my good moments or bad moments are going to show up.  My health changes from hour to hour, making it impossible to fully commit to plans.  Work is a big issue here, and one I've found myself consistently unable to maintain.  When I go anywhere (even for a short visit!), I have to pack a bag of medications and special food.  My illness is almost like a child, intertwined so close with me that I have to look after its every move, as I naturally want it to be the best it can become.

Some of the thoughts constantly on my mind:

  • What exactly is this illness (as my doctors give a diagnosis, but never seem quite sure...)?
  • What can I do to reduce symptoms?
  • Again, I'm not going to lie...once in a blue moon, I ask why me?  Am I going to die from this?
  • What are these drugs doing to my body and mind?
  • What can I possibly eat that isn't another meal replacement shake?
Of course, when a good moment shows up...I treasure it.  I even try to make the bad health moments special, as they show up more than I want.  I push the question as far back in my mind as it will go, but really I'm wondering - when do I crash down again??

But a life with illness is still a life.  One I choose to live and enjoy.



Joy said...

Have you hear Arlo Guthries Song 'Alice's Restaurant'. There is a bit where he is about to sing the chorus and says 'I just have to wait for it to come around on the guitar....'
That is how I have to live my life, all my plans up in the air, but waiting for the right time if it comes around on the guitar!
Best Wishes for today.

Toni said...

Hi Annie,

I found your blog through a comment you made on another one. I don't have a blog myself but feel part of the blogging community because I read so many of them! I've been sick for almost nine years. Like you, it's a mysterious illness that the doctors put under that nasty category CFS.

I just wanted to say hello and tell you how much I appreciated this post, especially where you said that this illness is like a child that we constantly have to look after. That's so true. Even though we try to make our lives about more than the illness, not an hour goes by (at least not for me) that I'm not forced to take it into consideration in deciding what to do, etc.

Thanks for your blog.

My best,

Annie said...

Thanks Joy, I'll have to look into hearing that song!

Toni, thank you so much for stopping by and liking the post. I'm sorry to hear that you are also sick, but in a way it's nice to be in a group of like-minded people. I'm glad you enjoyed being here :)

That made my day!

Anonymous said...

Hi Annie,

Thanks for coming by and visiting my site. I appreciate your post so much with all it's honesty and realness. Take care!

Roanne Weisman said...


By being proactive you are truly "owning your healh", which is what I had to learn to do in order to recover from a paralyzing stroke. I still live with the effects of chronic illness, but, like you, refuse to give in. In fact, as a result of my experiences I have published several books!