I committed to writing down my experience with CFIDS and then with Valcyte. I really wish I were in a different state of mind. It sounds like I'm always depressed. Although it's true lately (since being on Valcyte) I'm not always depressed.
The question has come up for me lately about whether or not it's worth it for me to continue on with Valcyte. I won't make the decision without the help of my doctor. Each day has become an agonizing struggle to make it through the crippling depression that has occurred since starting Valcyte. This is an entirely different ballgame. Tuesday I was reading through news stories and came across one about an organization called Final Exit which is a hastened death network for people who suffer from incurable illnesses. Apparently a couple people in the organization have been charged with a crime. I found myself going to their website to look them up. Then I found myself in tears when I realized they send people to be with you at the time of death. I find it ironic that this illness is so isolating but that I could invite people to my death if I wanted to.
That night I had a dream. I've been having lots of dreams with my mom in them. Nightly in fact. That night I dreamt I was trying out two different bicycles. I was trying to decide between the two. For some reason I couldn't purchase them that day but kept going back to look at them. I really liked the bikes. The day came where I had the money to purchase one of the bikes. I was checking out. While I was checking out I realized my mom was standing right next to me waiting for me to check out.
I know that depression can be a side effect of Valcyte. I keep telling myself that maybe it's working on a couple viruses. HHV 6 is associated with depression. Apparently one of the proteins produced by it (?) can cause depression. It's not fun. And I'm only 47 days into it. I have 123 days left on it.
But I have to ask myself if I'm crying at the philosophy of organizations like Final Exit-is this worth it?
Physically I'm having some improvement. Not much but there is some. I have some GI symptoms now that I didn't' have before but physically I find Valcyte not bad at all. In fact, the herx I felt from antibiotics was worse than this. It's the mental/emotional part that I can barely take. I manage to survive minute by minute sometimes.
And then there's God. I've been praying every day for some peace or some relief or to feel God's presence. Silence. I don't get it. Not that I'm entitled to any sense of peace or anything for that matter but I just hoped for something.
I'll continue to hang in there...