“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, March 19, 2011

XMRV Treatment: One Month

Stupid Daylight Savings Time.  I was all set to write this wonderful, optimistic post about how good I'd been feeling lately, then WHAMO!  DST + monthly hormonal revolt = crash and feeling crappy.

Prior to the crash, I noticed several very good days.  And I mean VERY good.  There were days where I woke up refreshed and smiling.  I do not often wake up refreshed, and I almost never wake up smiling.  Although my functionality didn't seem dramatically improved, I felt like I was improving.

With CFS, I am aware of the energy cost of every movement.  I notice the effort it takes to raise my hands to wash my hair.  I notice the effort of standing while getting dressed during the day.  I notice the effort to write a journal page.  I notice the effort of talking on the phone for 10 minutes to my husband.  CFS is like a heavy fog that settles into my bones, and I am aware of it all the time.

But during those good days, it was like a lifting of the fog, or maybe more like a lightening.  Instead of feeling like I was walking through sand, it felt like I was walking through glue.  Yes, everything was still an effort, but so much less of an effort than it had been.  I felt lighter, like gravity had lessened its pull on me.  It was wonderful!  And I was ready to declare yes, I am getting better!

And then we had the good ol' time change switcheroo, and a whole week has gone by with no good days.  My sleep is back to being disrupted and unrefreshing.  My schedule is all messed up, and my internal clock is not adjusting as quickly as I'd like.  I'm staying up too late because I'm just not sleepy yet, dang it!  And then I'm sleeping 10 hours and still waking up sluggish.  Like I mentioned, my monthly period always exacerbates my symptoms, and having it coincide exactly with the time change has been a double whammy. 

I'm hoping this week brings improvement, that my body will adjust to the time change and let me sleep well once again.  I'm hoping I'm able to coax a few good days back. 

Other things I've noticed:  I don't have any side effects with the medication at all.  I'm tolerating social visits much better than before.  And I've been adding spontaneous little tasks to my day, things like washing the sink or unpacking a box.  So maybe my functionality is improving a tiny bit.


Elaine said...


Oh my... I can so relate to your post. The time change has been really hard on me too.

I am so happy that you had some time of feeling "better". I hope and pray that once this crash passes, you get to feeling much better again!!

I am amazed that you have NO side effects from the meds. What a miracle that is!

Praying for you lots.


willywagtail said...

Sorry to hear that. Hoping things even out again for you. Is it possible that, in your excitement, you have also used up all the extra energy released by the correcting work of the medication and had a crash again? Cherrie

Shelli said...

Thank you, Elaine. People are very wary of the side effects of these meds, but it's similar to other medications. Only a few people experience the side effects; most tolerate it just fine.

Cherrie -- Ah, you caught me! I have found myself testing the waters a little now and then, kind of like peeling back a bandaid and poking the wound to see how well it's healing. I'll have to look at this setback as a good thing, reeling me back in to my proper activity level.

Renee said...

The time changes can be brutal...the one in the fall is worse for me, takes weeks for me to adjust. Hope all things settle down soon for you. Wishing you better days ahead, friend!

Moderator said...

Thank you so much for sharing your story. I'm 44 and have CFS and fibro for 11 years. I also suffer from ulcerative colitis and pancreatis. Not sure which of the three is the worst. Can you tell me what the HAART protocol is, and where you live? I've had trouble finding doctors as open-minded as you. Thank you for your help and best of luck to you .. I hope it works! p.s. I just watched Dr. Montoya's speech from Stanford - nothing new to report :-(

dominique said...

Shelli - This is so awesome! Yeah! I can't wait to see how much more you improve!

I hope you recover quickly from the time change and the monthly time.

Thanks for sharing this. What good news!

Dr Speedy said...

Hi Shelli,

Thx for that. What ARV medication are you on if I may ask?