Smelly Politics

I have been closely following the news regarding various negative XMRV studies and the responses from WPI.  I have yet to see a study that truly challenges Dr. Mitkovitz' findings or replicates her study.  I have heard of some interesting and plausible conspiracy theories.  It's all about money, greed, and power, and we, the sufferers of CFS, are being trampled under their feet.

There are several studies underway that should shed light on the subject one way or the other.  But Science magazine wants to undercut all that and jump to an early and ridiculous conclusion by requesting that Dr. Mitkovitz retract her paper.  It is unconscionable.  I have to wonder why they would do this now.  We've been told for almost two years now to let the science work it out.  Why aren't they willing to let the science work it out?

I encourage you to sign this petition that tells Science to retract their EEC.  http://www.change.org/petitions/an-open-letter-to-the-editors-of-science-2

Improvements

After 2 1/2 months of XMRV treatment, I definitely feel better.  My need for rest has diminished quite a bit.  I still force myself to lie down twice a day, but I'm often antsy and peeking at the clock around the 20-minute marker.  I am sleeping less.  I don't seem to require 10 hours of sleep in order to feel good.  Often, I will wake at 6 am after 7-8 hours sleep, and I'll be unable to doze again. 

I feel uplifted, happy, almost exhilarated.  I find myself smiling a lot more.  It's like a weight, a fog has lifted from me.

I still have to be careful with activity.  I shopped WalMart the week before Easter.  It was way too big an outing for me; I should have started with something small, like a trip to the corner grocery store.  But I find that I'm chomping at the bit, eager to push the envelope just a little bit to see what happens.  Did I crash?  Um, yes, yes I did.  It was a big one, but it only lasted one day.  A crash like that would have normally taken me at least a week to recover from, if I indeed ever fully recovered.

I'm doing more around the house.  Not that much more, but noticeably.  It's interesting how I had unconsciously been conserving energy, calculating the most energy-efficient way to do anything.  I watched my husband put on his shoes one morning.  He picked one up, untied it, set it down, did the same with the other shoe.  Then he picked up the first shoe, put it on, and put on the other shoe.  I was amazed that he didn't realize that he was wasting so much energy by putting the shoe down and picking it up again.  I never would have done that!  Likewise, I always made a beeline for the nearest chair whenever I entered the room.  If the phone rang, I'd wait until one of the children handed it to me.

Yet, twice this week -- twice! -- I found myself pacing while talking on the phone.

The other thing that I've noticed is that I am tolerating social interactions much better. I've been out to dinner with my husband twice without any negative repercussions.  My sister-in-law dropped by and stayed a couple of hours.  I was exhausted, but it didn't cause a crash.  I can handle a drop-in visitor for about an hour now.  Talking on the phone is still challenging; I'm good for about 45 minutes of that.

Meanwhile, I'm enjoying creative pursuits with my writing, and I've started using essential oils for symptom relief.  I haven't been using them long enough to report anything, but so far I've found a couple that seem promising for pain and stomach problems.

Happy Mother's Day to all you Moms out there! 

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.

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.

Hopeful Signs

Two things: 

Yesterday I felt good -- all day long.

And today, I definitely notice less pain.

:)

Follow Up Doctor's Visit

I met with my doctor yesterday, and I have to say, it went swimmingly!  My labs show no toxicity, and he said we would have seen something already if there were a problem.  I am tolerating the meds very well.  He asked if I have noticed any changes yet.  I told him that I have moments where I feel very good, but they evaporate pretty quickly.  Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions.  This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit.  I was impressed that he had not only noticed but remembered.  So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart.  I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day.  I got rather caught up in my story and didn't even notice the time.  I was pretty wiped out afterward, not surprisingly.  But no crash the next day.  I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills.  I don't have to return for three months.  By then, I should definitely know if the meds are helping at all.  If not, I stop treatment.  If so, we continue.  Fair enough, right?

My mantra these days is "We'll see, we'll see." 

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