“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, February 19, 2011

Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.


Elaine said...

Well, it sounds like it's doing "something". I'm glad you are sleeping better. I'm also glad that you arent having severe symptoms. I hope that you will continue to tollerate the meds well and that you will start to improve soon:)

Glad you are able to keep up enough to manage. That in itself is a victory!

Blessings to you,


willywagtail said...

It sounds like the same sort of reaction that one gets when starting on an antidepressant. The body needs time to get used to it. Good that your household hasn't descened into disarray too. I'v e just done a [post on keeping the status quo - that is, keeping my house to it's present standard, not letting it slip. Cherrie

Amanda said...

I'm glad to hear you're being kind to yourself and listening to your body as you make this transition. It always takes our bodies time to adjust to new treatments! Do what you can do and the unpacking can wait! I think the extra sleep is a blessing! As far as yoga goes, I would maybe ease into it with a restorative pose. Something that is relaxing, like legs up the wall. I would just do one pose and see how you feel! Good luck!

Anonymous said...

Hi Shelli ~

I love reading about your brave journey---always rooting you on!

First I learned why it is important for patients in this "experiment" not to tell which drug they are taking. And now I learned that there are five different drugs to choose from. I am wondering how you made your particular choice!

So fascinating the whole thing.

You are so brave, girl!

Oh, I also do 10 minutes of yoga at bedtime when I am able. I am determined to s t r e t c h the pain away!


Renee said...

Sounds like things are going very well considering what you have introduced to your body. I am so excited and hopeful for you....thanks for keeping us updated.

Shelli said...

Thank you all for your kindness and support! It helps, more than you know.