Sunday, January 4, 2009

Days Like These...

I'd love to be writing about something different. I'd love to be writing that I've seen the face of God or had a glorious spiritual encounter or was experiencing the deepest sense of joy imaginable.

Nope. I won't be writing about that today. Maybe not even for awhile. Maybe never.

Today I had one of those moments of being hit so hard with reality that the moment was hard to bear. It's bad enough that this has destroyed what was my life. But to look into the eyes of someone I love and see the pain and destruction there as well....It was almost too hard to bear. I thought to myself. I have to die. That's the only way out. It's the only way to release someone else from this horrible suffering as well.

I was already feeling badly physically and emotionally. I'm scared that the treatment direction is so unclear. I feel like a ship without an anchor tossed about in a storm.

I don't even know if I'm making sense. I don't much care at the moment. I have no where else to turn. No one else to turn to but this blog. One of the hard things about this illness is that people really have no idea what it's like to live with this. To have one's energy just sucked away. I don't know how to describe it. It's not like I can call any of my vanished friends and say "I really need to cry on your shoulder." The truth is I have no one to call and express how frightened I am.

I don't know how to cope with this anymore. I was doing somewhat okay for the past year but somehow the move cemented the fact that this isn't a temporary thing.

My CFIDS doctor is certain (as certain as one can be with this illness) that Valcyte is the only thing to do at this point. I'm not convinced. He hasn't even done very much testing so I don't see how he can be convinced yet he's the only person I have on my treatment team that has a partial clue.

I'd love to go to therapy but I don't have the money for that. Nor can I count on having the energy to make it to a weekly appointment.

I'm staring this illness in the face and I don't like that what I see reflected back is me.

I'll go on for another day and hope tomorrow is better. At least tomorrow I can call my CFIDS doctor's office to make an appointment.

1 comment:

Renee said...

I am so sorry you are struggling so much right now. What you are writing I have felt myself and I know that many many CFS sufferers feel or have felt the same way. When I wrote the newsletter for the chronically ill they would express these feelings at times. There are people who understand your fears, despair and confusion with this awful illness.
You remain in my thoughts.