Reverting

I changed the name of my blog back to "Living the CFS Life."  So much for XMRV.  At least it has drawn attention -- and research dollars -- to our disease.  I am grateful for that.

I realize now why so many of the "old timers" didn't get involved in the uproar of XMRV.  They've been through this all before, perhaps many times.  The announcement -- THIS IS IT!  The euphoria, the soaring hope, leading inevitably to "Oops.  We were wrong."  I suppose I won't be so easily pulled in next time.

So, I join millions of others, still waiting, waiting, waiting.  While I wait, I will do what I can to pace and manage my disease to the best of my ability.  I am continuing anti-retroviral treatment because I have seen progress.  I'll continue as long as I progress.  Who knows why it is working or how.  Maybe it's just the fact that I moved out of a two-story house.  If I plateau, I'll stop.

Meanwhile, I'll keep doing what I've been doing the past five years now: Trying to embrace the joys of every day, tiny moments.

Applying Venture Philanthropy to Chronic Fatigue Syndrome - Health Blog - WSJ

Here is some very exciting news for those of us with CFS -- $10 million dollars going towards research! Woohoo! Looks like some people are starting to take notice.

Applying Venture Philanthropy to Chronic Fatigue Syndrome - Health Blog - WSJ

Schooled

Answer:  Christmas, the time change, and back-to-school.
Question:  What are "Things That Kick My Butt."

Oh, I mourn the end of summer.  I'm one of those moms who enjoys having their kids around.  Do you know that I did not hear the words "I'm bored" once?  Lazy days spent together, working on a puzzle or lounging in the pool.  It was delightful!

Then comes the mad dash to get haircuts, school supplies, and new clothes.  Worry keeps me up the night before, and then the dreaded alarm clock rudely demands I wake before my body tells me it's time.  Of course, I can't get back to sleep after, either.  Disrupted sleep and stress are taking their toll.  I'm dragging.  My energy window has caved in, and my activity threshold is almost non-existent. 

So once again, I must rein in my enthusiasm.  Be patient, and nurse my body through these changes.  Patience, bah.  I've been excited about testing my wings.  I want to begin small excursions out of the house.  Just half an hour, say to the park or just sitting at the mall, once a week.  It looks like that will have to wait a little bit longer.  Once again, this disease reminds me who's really in control here.

Patterns

As I'm trying to navigate the latest changes in my health, I look for patterns that help me manage my time and energy the best I can.  So here's what I have figured out right now.

I have an energy window from about 10 am to 7 pm where I feel pretty good.  12 to 3 pm are my very best hours.  I try to schedule most of my activities for this magic window of time.

In addition, I'm finding that I have an activity threshold.  This is where I'm learning.  I can tolerate an activity for a certain period of time.  My body is very clear in warning me when I start to cross that threshold.  The first thing I notice is that my cognition begins to wane.  Next, my eyes begin to twitch, and the more stress, the more I twitch.  Finally, if I've really pushed it, then I have muscle weakness and shaking.

My goal these days is to discover my activity threshold.  In my excitement over my new-found energy, I have a tendency to try something and ignore my body's signals that I'm overdoing it.  Although I bounce back and recuperate faster than I did before, I'm sure that the bouncing back and forth can't be good for me.  I can only imagine that staying within my activity threshold would help me heal even faster.

XMRV Treatment: Five Months

I have been on ARVs (anti-retrovirals) for five months now, and I have experienced no side effects.  I continue to see a steady improvement in my health.  I would say that I have gone from about 20-25% at my lowest in February to about 35% now.

The greatest improvement has been in the symptom of fatigue.  It used to weigh on me like a suit of weights, making every movement and activity feel so much more difficult than normal.  The lifting is like the sun breaking through the fog, and it has had a huge impact on my overall mood.  It's been better than any anti-depressant I've ever tried.

My pain has been lessening as well.  It's hard to tell if my cognition is improving.  Sometimes I think it is, but it is the first thing to go when I overdo it.

One challenge I face as I start feeling a little better is which activity to add to my life.  There's a whole list of things that I want to do, that I should do, that I once dreamed of doing.  I haven't had to prioritize in a long time.  Everything was off the table before, and I chose my activities based solely on necessity and urgency. 

Suddenly, I have choices in front of me.  And each day I seem to choose a different combination based on my whims.  One day, I spent a little individual time with each of my kids.  One day, I went to a water polo tournament (about two hours).  Another, I had friends over to swim.  And another, I went to a party at a friends house.  See?  One or two "big" days a week, and the rest of the time I'm recovering or preparing for it.  I'm not sure I'm adjusting to my new healthier me very well.

I feel like I have found the perfect regimen for me.  I have the ARVs, which I believe are stopping the disease.  I feel like my body is broken, and that the essential oils and supplements that I'm taking are helping to repair it.  And I am able to exercise in the pool most days, which I feel is strengthening my body.

I will write a new post soon about the essential oils I'm taking, because I love them.  It's the first time that I've found something that helps with my symptoms.

XMRV Treatment: Four Months

I continue a slow but steady improvement with my health.  When I went to my last doctor's appointment, I told him I felt like I was getting better.  I said I'm able to tolerate social visits better, and that I was more mobile around the house.  He said that was nice, but he was hoping I'd be able to give him something a little more quantifiable.

Well, here's a quantifiable improvement for you:  I lost a couple of pounds!  I haven't changed my eating habits.  It's been due to an increase in activity.

I have been taking advantage of having a pool in my backyard.  I try to go in every day, now that the weather is so hot.  I'm sure that being out in the sun and getting a nice Vitamin D fix is helpful.  I am gentle in the water.  I walk the width of the pool a few times, and I float on my back.  I can feel the muscles in my body stretching in new ways.  It feels heavenly.  I do a couple, just a few, water calisthenics.  And on a good day, I'll take a few strokes across the pool.  Seriously, three strokes will get me to the other side.  Again, it's movement in a new way, and I'm always careful to not get my heart rate racing.

The daily exercise has been helpful for my sleep, too.  I've been getting a good nine hours a night.  I feel more energetic during the day, less dragging.  I still rest twice a day, but I have to force myself to stay down at least 20 minutes in the morning and half an hour in the afternoon.  Rarely am I tired enough to rest a full hour.

I also feel like my immune system is strengthening, just a little bit.  This is kind of scary.  I know I've had infections floating around my body undetected for some time; now, my body is starting to fight back, so I'm getting more "sick" symptoms like mucus and fever.  I tell myself this is a good thing, and for proof, I have more energy than I did before my "sick" symptoms.

I'm still not venturing out of my house much.  With summer vacation, there aren't too many reasons to.  I content myself with enjoying the improvements on this level without worrying about kicking it up a notch just yet.

I'm enjoying my essential oils.  I feel like they are helpful, especially with immune support and orthostatic intolerance support.  Who knows for sure, right?  The digestive aid is definitely helping, though.  I really like the new supplements I'm using, too.  I feel like they help me bounce back from overexertion better than I had before.

Meanwhile, the controversy over XMRV continues.  Personally, I am waiting for the Lipkin study that should be out by the end of the year.  I feel that if WPI has made a mistake, he'll be able to explain how instead of just saying, "Well, I couldn't find XMRV using my fast, cheap methods, so it must not exist."  WPI continues to be confident that true replication studies will support their findings.  In the meantime, I'm taking ARV treatment, and I'm getting better.  That's enough for now.

Note to Self: Stupidity Causes Setbacks

Well, I did it.  I pushed too hard too soon.  I attempted a visit with my sister that required an hour and a half drive each way.  I rested once while I was there, but it wasn't enough to undo the damage.  I crashed hard, and I haven't been able to get back to that blissful feeling I had been enjoying while on the meds.  It's been three weeks, and recovery is slow.

I haven't fallen all the way back to square one.  I'm still better off than I had been over the holidays and with the move.  It's just that feeling improvement and then having it slip from my fingers is frustrating.  I know what it feels like now.  I want it.  I hunger for it.  I stamp my feet and shake my fists when I can't have it.

I have started using essential oils as a supplemental therapy for treating symptoms.  Lavender helps a little bit with sleep.  I'm going to be adding marjoram this week.  It's supposed to have a sedative effect.  I'm hoping that between the two of them, I'll be able to stop taking the over-the-counter sleep aid I've been using.  I use a digestion blend for stomach problems, and it works fantastic.  I've also been taking oregano to fight infections, and an immune-boosting blend.  I have a pain relieving blend that works pretty well if I remember to use it at night.  I wake up with much less achiness.  I've started using cypress for circulation and the jury's still out on that one.  And I've been diffusing citrus oils, wild orange or a blend, which helps disinfect the home and smells delightful.  Citrus is supposed to relieve anxiety and have anti-depressive qualities. 

I don't know if all the oils will work, but like I told my sister-in-law, at least they smell good.  :)

I'm going to switch to a new brand of supplements next week.  It's a complete system of vitamins, minerals, fish oil, and antioxidants.  They claim that it should help with mitochondrial production, inflammation, oxidation, and glutathione production.  All stuff that is helpful for CFS.  They also claim that you're supposed to be able to feel the difference pretty quickly.  If that's true, I'll share the brand name with you all.  If it's not true, I won't bother.  I'm hoping that it may help me rebound from my relapse a little faster.  Help me get back to my state of nirvana.  (OK, I'm exaggerating, but comparatively speaking, that's what it feels like!)

Friday was the last day of school, and we had a few friends over for a casual pool day.   Everyone had a good time, but of course, I paid for it afterward.  I'm looking forward to the day when I can enjoy these activities without fear.  I'm excited that we're moving into summer, because it's a much more relaxed time for me.  I enjoy having my kids home.

Hugs to those of you who are not doing well right now.  You are in my thoughts and prayers.  I hope the sunshine of the season brings healing to you.