Friday, March 6, 2009

Is It Worth It???

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...


Miss D. said...
This comment has been removed by a blog administrator.
Jozephine said...

I have so much sympathy for you. You are dealing with a great deal and it is not surprising that you are depressed.

Hold on, - this too will pass.

SueInCanada said...

hello. i have suffered with CFS for over 17 years and am also on antivirals. my illness started with EBV infection.

i was on valcyte for 7 months and valcyte+valtrex for 1 year. i have just now started to notice some real improvements....

hang in there! it's a long road but you will get there.

its good of you to create a blog. i tried to but just can't seem to keep up with it due to lack of energy and brain fog.

ps...if you need a pep talk feel free to email:

Renee said...

I am so sorry you are going through so much right now. Depression makes it so hard to deal with all the rest. "Is it worth it?"......It must be a difficult decision to make, but what is right for you will come to the surface.
Nothing is harder to deal with than the silence of God....I believe He is there right beside us even when we don't feel his presence...maybe even more at those times because He loves us so deeply and completely. Maybe He is speaking to you through the voices of those you love. I hope that the decision you make with whether to continue the Valcyte or not brings you the peace you seek.

Pris said...

I'm pulling for you. I don't know if depression is also common in the first stages of CFIDS no matter what we're taking or trying. I do know that for the first four years I woke up with fierce depressions that usually disapated by noon. They seemed to be related to the heaviness of my sleep. Lighter sleep, less depression. I hung in by my fingernails to last until mid-day each day, then tried St Johns Wort. It kicked in and erased those feelings, but yes, I do know what it's like to consider 'the final solution' and am glad I didn't.


Sue Jackson said...

So sorry to hear you're going through such a difficult time right now.

I don't know if it would help, but one possible option to discuss with your doctor might be switching to Valtrex, at least for awhile. It also acts against HHV-6 but generally has far fewer side effects. Maybe you doctor can tell you whether that would help you or not.

Almost everyone with CFS has suffered from severe depression at one time or another (I did periodically during the first two years). Please know that you are not alone, and there are lots of people that care about you - both in your real world and here in the virtual world.

Things will get better.

Waterstone Jewelry said...

I'm so sorry to hear about your struggle with depression. My daughter has dealt with CFIDS for over 3 years now and it's unbelievable.

I think you know that even though you sometimes don't feel it, God is with you. In your dream when your mother was standing by you, I truly believe that it's God and that's His way of letting us know that he's with us. My sister continued to have dreams after our dad passed (she was concerned for our mother) and each time my dad was telling her that everything was okay and he was with her. I've heard similar stories. You're clearly a very perceptive person and I think you're lucky to have such meaningful dreams.

You're taking one day at a time and sometimes that's all we can do. Just keep the hope.