Wednesday, April 15, 2009

Twists and Turns

I've been thinking about acceptance a lot. It's key to finding peace in the midst of all this illness throws at us. I believe that once I truly accept this illness then I'll be able to make good choices about my life, my health, and my attitude.

I have about the same amount of power over this illness as I do sitting in front of an ocean wave willing it to stop from crashing on the beach. I do have choices though. One of those involves how I handle my internal life. To what extent I'll be able to recover any external life remains unknown. Right now the only thing I have control over is how I deal with my self.

I've been very self critical with lots of time to examine my life. Unfortunately the depression which can go hand in hand with an illness like this causes the reflections on my life to focus on everything I've done wrong, every single thing and every single person. While useful it becomes self destructive when taken to the extent that I have where I have felt overwhelmed with regret and a longing for the chance to do it over again. The self pity, the derogatory remarks I make about myself, the judgments I have about myself-all these negative attitudes have to stop. It takes energy to have thoughts like this.

To that end I decided to begin Vipassana Meditation this Monday. For Christmas two years ago I was given a meditation CD done by a man named Jack Kornfield. He wrote a book that I read years ago and really liked called A Path With Heart. I started listening to the CD during my rest breaks. I figure since I need to rest I might as well start doing a simple meditation that involves nothing more than simple focusing on the breath (much easier said than done).

The past two days I haven't woken up with that horrible sense of doom and depression. Last night I thought I would write a post today about my mood lifting. I checked my email in the morning and received one which threw me.

I should know by now that one thing this illness promises is to knock you for a loop the first few years. It's like a cruel trickster figure.

The email was from someone I met who also has this illness including chronic lyme. She informed me that the head doctor of the medical group that I see for my CFIDS was having Dr. Montoya speak to them about Valcyte. Apparently they are not seeing the same results that Montoya got. The medical director proceed to tell my friend that not only are they not seeing the results but they are having doubts about using it. I don't think it bodes well that Montoya has yet to publish his results. I know there is a lot of data to be looked at but....

Anyway, I was upset by the fact that my doctor has doubts about this very toxic drug I'm taking. And once again faced with-is this going to be it for me? Is this as far as I'll get? There are people who are able to do much less than me. I'm housebound and sometimes bedbound but I can do chores around the house and I can go on outings more sometimes, not very often, for as long as 4 hours. I'm grateful every day for what I can do. It's just that it's not much and my discouragement is always tempered with the hope that I'll regain more functioning.

I've spent the better part of the day trying to sort through my feelings. I did email my doctor and asked him about what I heard. I don't expect any sort of answer soon simply because it isn't an urgent medical matter.

What my reaction ultimately told me is that I have a long ways to go before I truly accept this.

Katie, my kitty, has been an angel. Early Monday morning I felt a little nose pressed up against mine so I opened my eyes. There was Katie, sound asleep with her nose up against mine. She had curled herself up right near my head. Her eyes were squeezed shut. Today as I was crying she came over and laid next to me and put her head on my shoulder. Its as if she knew how much I needed that sense of comfort.

In the next month I'll be making the decision about whether or not to continue with Valcyte.

I think the treatment that consistently shows the most promising results is pacing.


Jozephine said...

Do you blame yourself for your illness? I know I do. I'm going through a phase of it at the moment and keep having to take myself off into a corner and giving myself a strict talking to.

I identify with your journey of acceptance. Every time I blow my rest routine I'm demonstrating that I'm still in denial. A friend of mine once gave me a tip for digging (when I was well). Always look at how far you've come, not how far you have to go.

Debbie Anderson said...

I have had CFIDS for 25 years, and I agree with you that acceptance is the ONLY thing that is going to help you get better. You will never get back your old life..I tried, many times (I am stubborn, and arrogant, and I was going to get back there) but I can tell you now that you won't. The meditation will help a good deal, as it will help you focus on what your inner self is telling you about what to do. And believe me, your body knows exactly what to do.

It is a complete waste of energy and time to blame ourselves, or get angry at society for not believing us, or getting upset when the medication a doctor prescribes, does not work. Doctors do not know what they are doing, or it would not take the twenty five years I've been suffering, for them to come up with a cause or a cure.

Blaming ourselves, and anger at outside forces for not fixing it, only diverts from listening to what our bodies are telling us, and finding the strength and the courage to do what it tells us to do.

I hope you get to your acceptance faster than I will surely save you a lot of pain and disappointment.

Good luck to you

Renee said...

I am right with you on the need for acceptance..I have been in that process for 25 yrs myself. Even though my journey started 25 yrs ago from a tick bite I sometimes blame myself by thinking, WELL, IF you were not so emotional or a type A personality,a better immune system, or need to save be everything for everybody..... you would not have gotten as sick with Lyme, CFS, etc. This type of thinking only keeps us circling the drain!
I know that acceptance is a process ~ and each person's journey is their own...when the time is right......"we do what we do, and when we know better we do better"!
Thanks for this posting as I needed this reminder for myself. As of late your posts about pacing and acceptance have been extra helpful for me. I think we are on to something here at your blog, mine, and so many others here in our blogging corner of the world...We need only be still and listen to what our bodies are telling us and for me, what I believe God is directing my way through the words of others..and through my own small voice.
Gentle hugs