I'm laying here listening to my ipod feeling grateful for things like beautiful music, a comfortable bed, my kitty, and my laptop which allows me to connect with others in the blogging world. Sometimes when I'm in a dark place I think of those of you whose blogs I read and who I feel a connection to and I feel a sense of comfort.
I'm still crashing. I woke up yesterday at 4 am. At 6:30 I took an Ativan to help me get back to sleep. It worked but it wasn't a good sleep.
I have to remind myself that, overall, I'm doing better than I was last year. The doctor who diagnosed me gave me such wise advice when he said you can't measure improvement in days or weeks but you have to measure it in months. If I think of it that way I don't feel as discouraged when I have setbacks like this week.
It's time to get my blood drawn again to make sure the Valcyte isn't doing measurable damage but there is no way I'll make it out of the house today. I don't have it in me to fight the dizziness in the car, the anxiety over whether or not I'll faint, etc...The dizziness is pretty much gone but I don't want to push it. I've noticed that while watching TV when the camera pans away I feel a slight sense of vertigo. Hopefully that won't increase. Sometimes I have to close my eyes. I don't watch too much tv anymore since I learned it can take a lot of brain energy to process the images.
This past Monday there was a meeting with the CDC regarding chronic fatigue syndrome. The CDC has been absolutely unethical in their dealings with this illness. They diverted money that was supposed to be used for CFS research into other projects. It's a long discouraging story that needs to be told. I don't know anything about the history but it can be found in Hillary Johnson's book "Osler's Web" and also in Dorothy Wall's "Encounters With the Invisible." Anyway, people with CFS were allowed to phone in during the meeting. Hillary Johnson provides a great summery in her blog: http://oslersweb.com/sb/page.php?ID=74147&post=594304
It's a crime what they are getting away with. I plan on becoming politically active regarding this illness once I finish with Valcyte treatment.