Thursday, April 30, 2009

Measuring Improvement

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:

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.


At Home on the Rock... said...

Measuring in terms of months (rather than days) is an excellent way of looking at that I am going to adopt.

I get so discouraged over the days...some days I feel well and think I'm on the road to recovery and then I'm down for the count. On those days I think I'm not getting any better. But....when I stop and think back to a year ago or even 6 months...I do see some improvement.

Renee said...

Hi Terri
I think it is great to look at it in terms of months...I think that is why i was so discouraged to feel worse than a year ago...the key will be how fast I recover I think...
Small improvements just like small steps in expanding our energy envelopes....Bruce Campbell calls that the 1% Solution.
I hope and pray your improvement and relief from your crash comes quickly....
The CDC needs to be accountable for what they have NOT done for CFS sufferers...

Toni said...

Thanks for the link to the CDC conference summary. Terri, I left a long comment on your last post about my experience on Valcyte. I don't see it posted, but I hope you got it. If you didn't, leave a return comment and I'll try again.

My best.

cfswarrior said...

At Home-

It helps me when I remember to do this. Its hard not to get discouraged at times.

Thanks for posting those pictures on your blog. They are beautiful.


cfswarrior said...

Hi Renee-

Thanks for the reminder about the 1% solution. I pulled his book out again today. I need to go through it again.

Your body is undergoing so much with the lyme treatment it makes sense that you would feel worse this year.

Let's hope we both have a quick recovery from the crash!


cfswarrior said...

Hi Toni-

I didn't receive your comment about your experience on Valcyte. How disappointed as I'm sure it took energy to write. I would sure love to hear about it if you get the energy to write about it again.

Thanks so much.


Jozephine said...

Yeah, I think you've hit on a really important aspect of recovery. By the very nature of the illness it is going to be slow - and you know what they say, 'a watched pot never boils'.

I find some things get worse while others get better and I forget how bad I was. I had (have) an ME occupational therapist. She suggested I keep changes sheets on which I listed how I am now, physically, emotionally, socially and cognitively and where I want to be in six months. Then go back to the sheet in six months and complete it again. It's been helpful in noticing things like recovery time, or the time lag for PEM, or sensitivity to meds etc etc.

Valcyte sounds like pretty strong stuff. I hope you are back on your feet again soon.

Pris said...

I agree, too, with how to look at improvement. On the one hand, I'm still housebound, but on the other, when I compare now to the first years of this illness, I see vast improvement. The dizziness has been one of the hardest symptoms for me, lingering way longer than any of my CFDS friends. That's improved, too. It only worsens when I try to go into a big place with a lot of 'stuff', plus flickering fluorescent lights, or if I'm taking a med that affects me that way (as in most meds:-) I've read some of the accounts of the CDC meeting and I'm glad we had our 'day to say' even though I have no hope the CDC will ever be an ally in working with this illness.

At Home on the Rock... said...

You're welcome Terri....glad you enjoyed the pics.

I feel so blessed to be able to see such things....I would much rather be out enjoying them instead of just watching (I would have loved to go down on the rocks with my family but knew I'd never make it down and back up)...but time. I was just commenting to dh this morning...a year ago at this time I was in really rough shape...and hadn't even had a dx I have made a lot of progress (but get impatient with the day-to-day things)

Hope you recover from your crash quickly.


Toni said...

Hi Terri,
Here is a shorter version of what I posted on my experience with Valcyte. I took it for a year and, after an initial partial recovery at the six-month point, fell back to my pre-Valcyte level. When it became clear that it wasn't going to work, Dr. Montoya told me to stop taking it. Nobody seems to know why there are so many different reactions to the drug -- some are helped, some aren't, some experience partial improvement, some have the experience that I did.

It seems to me that five months is a good point for you to evaluate it as most people who are going to improve have experienced a noticeable improvement at the three month point.

I told myself when I started taking it that it was just experimental and not to have expectations, but once I was on it, I forgot that resolve and felt that not just myself but everyone I knew was counting on it to cure me. This change in my attitude toward it led to real heartbreak when it didn't work. So, try to remember that it was experimental and that you knew that when you started. It may help you cope should it not turn out to work for you.

I wish you the best. I enjoy your blog.


Sue Jackson said...

You're so right about measuring improvement in terms of months. Besides, if you try to find trends day-to-day (as I have tried before), you'll drive yourself crazy with the constant ups and downs.

So wonderful that you're feeling grateful today - that kind of positive feeling just makes everything better, doesn't it?


cfswarrior said...


Thanks for sharing your experience with Valcyte. I think you are right on about viewing this treatment as experimental and not to have expectations. It's hard not to. I'm trying to prepare myself for the inevitable.