“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Saturday, April 16, 2011

XMRV Treatment: Month Two

So sorry I haven't posted lately.  I've been occupied by my writing (imagine that, focusing on real life and not my illness).  In particular, I've been participating in the A to Z blog challenge for the month of April on my writing blog.  It's been a lot of fun, but I find that it takes a lot out of me.

After two months of treatment, I asked my husband if he could see any differences at all.  He said there are hints.  I agree.

I notice that I am having more good days.  By good days, I mean that I feel lighter, happier, in a good mood, like a fog has lifted from me.  I have a little more energy, and I tend to do a little bit more spontaneously -- things like wash my sink, clear the table, empty another box (still haven't finished unpacking!).  It's not a big difference in my activity level, but it's definitely noticeable.

Unfortunately, that buzz of energy also keeps me up at night.  I have a hard time falling asleep, and when I do, it is filled with vivid dreams and wakings.  Which leaves me exhausted the next day, and it takes  several days to normalize again.  It's a cruel cycle.

Another thing that I've noticed is how horribly deconditioned I am after years of declining activity.  I can't help but feel that if I were in better shape, I'd be able to take advantage of my good days and do more with them.  It's a nasty catch-22.  If I push my activity level, I feel tired and crappy.  If I don't, I can't make any progress in my health. 

I've chosen to push myself a little bit.  I am doing gentle yoga in the mornings.  I've bought a pedometer.  I walk an average of merely 1,000 steps a day.  Before I got sick, it was around 8,000.  I try to walk just a little extra.  I'd like to get it up to an average of 2,000 steps a day.  For now, anything over 1,000 is a victory.

Many people have asked me what specific medications I am taking.  I don't feel like I can give that information right now.  It would be irresponsible.  I don't want to appear that I'm recommending this course of treatment for anyone.  I don't know if it works, and even if it does, I can't assume it will be right for everyone.  If you are as determined as I was that you would like to try antiretroviral treatment, then I recommend you do your homework, find which drugs target XMRV, and decide with your doctor which treatment is best for you.


Renee said...

Thanks Shelli for sharing with us...I wonder if the vivid dreams will die down when more of the virus is gone? That is what has happened with me and Lyme. Once the Lyme and Bart were down in my body and die off was not so intense the dreams/nightmares went away. Wishing you the best here.

Elaine said...

I'd been wondering how you were doing! It sounds like the report for now is positive. What good news. I was so concerned about the side effects of the meds... other than the dreams/nightmares, it sounds like you are doing great!

Its so good to hear from you!

God Bless.

Shelli said...

Thank you, Renee and Elaine! Elaine, I've had no side effects at all. The dreams aren't really something new, it's something I've noticed with CFS on the days I don't sleep well.

Alison said...

Ah, doing things spontaneously like unpacking and cleaning the sink. That's how I know I'm having a good day too. Thanks for the update, hope you have more good days :)

Judy said...

I haven't been blogging lately (been busy at the Women For Sobriety boards), but I peeked in to look for you because I was wondering how you are doing! Sounds good!!

Have you heard of Sue and I met there all those years ago through the email group!

Hugs Shelley, Judy

Kiwikchat said...

Hi great to read your blog,

A couple of the thing you wrote were things I have just started doing too so I thought I'd share what helps me.

I bought a pedometer too, great things for self regulating activity boundaries.

If i do 1500 or less steps a day I feel okay in the morning the next day when I wake, any more and the 'wake up' hangover gets worse. If I do 3000/day then I am really headed for a symptom flare. I find it hard to not accidentally take too many steps.

I do gentle Pilates to help build muscles/flexibility, it also just makes me feel good about myself looking after myself.

Good luck with your treatment plan I hope it works for you :)

Terry said...

Isn't it wonderful to be able to focus on something besides your illness?

I have systemic candida, which can lead to many other diseases. I am finally feeling better and able to start thinking about writing about other thngs besides sickness.

I am a new follower of this blog and hope to hear many new... "good things". Terry

Shelli said...

Thanks, Alison!

Judy, I'll check it out.

Kiwi -- Thanks! I do pretty well up to 2,000 steps so far. And I try to do yoga every day. So far, so good!

Terry -- welcome! I've just started using essential oils. Many oils have anti-fungal qualities. I've added it to my routine, because I know that candida overgrowth is a problem with CFS.

paul said...

just saw a new study on saying that XMRV is not linked to CFS now - hmmmm...

oh well, i pray for your health - i used to have CFS but i'm healthy now - went to a holistic doc that cured lots of CFS folks

Shelli said...

Paul, I know there's a lot of controversy. That's why I'm not recommending my course of action. But I'm glad I'm doing it. I am seeing improvements; we'll see if it continues. So happy for you that you got better! I continue to try alternate therapies to help with my symptoms.