“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

Sunday, October 16, 2011


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.


Renee said...

I am so glad you were able to find something that has helped you on the journey....your perspective is great, Shelli...enjoying the days, doing what you can and hanging on to hope! Thats all we can do isn't it...
I am feeling a bit this way about the homeopathic remedy I am taking. It hit me hard, and then I found a dose that works and now I am back to the worst pain in 3 yrs and confused by it all! I am beginning to think it is just the nature of the beast! The only thing I have ever seen that has helped people with CFS/ME to find a consistent better level of health that does not fluxuate much is the pacing and resting that the group I am with from Bruce Campbell's classes. So I am going to spend time and effort with that more now and what comes, comes..what improves, improves...what leaves leaves...Each day is a gift, right?
Sending hugs your way!

willywagtail said...

Very sad that people had to be duped by bad science but it is still good that you were/are able to benefit from the medication. You sound like you are keeping your chin up and every minute you can do that is another that helps with contentment and that is probably the best many of us can ask for. Cherrie

Rachel and Pia's Cottage said...

Onward and upward! My doc wanted me to take the xmrv test, but for 500.00 it didn't seem worth it right now. My symptoms are a bit different, but still something going on. I cheer you on Shelli...hang in there ! :o)

Elaine said...

So good to hear from you. I have had you on my mind since all this hoopla came to the forfront. So thankful that you are continuing to see progress! We are each so different and what works for thee might not work for me:)

A good thing for me to remember!!

You do have a wonderful perspective. Keep looking up and know you are thought of often.


Alison said...

I also feel like a CFS newbie now that the XMRV thing has petered out.

I have to walk up a flight of stairs to get to my apartment. I keep thinking I might get out more, like even to just get the mail, if I lived on the first floor and didn't have to deal with the stairs. But right now I can't imagine moving. Too much stress. Some day though. No stairs. That's the way to go.

zac said...

I'm surprised to hear that there is continuing improvement on the anti-retrovirals. I expected plateau a while back.

So I guess these gains are real, even after hearing news about Xmrv and the BWG. Have changes in dosing or start/stopping the AR affected progress? I guess I'll review the blog to check that.

Best to you.

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Anonymous said...

With all my past 10 years of suffering from cfs and dealing with doctors, I realised that there are a few tests that must be carried out and if diagnosed they should be treated as soon as possible are: hemoglobin, vitamin d, calcium, vitamin b12, thorough hormones, cortisol, thyroid, blood sugar and insulin resistence. Antidepressants better be avoided as they numb your nerves and senses.

Along with that, regular stretching, gradual exercises and keeping yourself busy with some possible activity will contribute to the healing process. Healthy diet will help in general well being and fight against possible infectious and life long diseases. In my case herbal treatment, homeopathy, acupuncture, chiropractice, osteopathy nothing worked.

Zucchini said...

Nice post, great blog, following :)

Good Luck :)

Morgan Sanchez said...

I don't know if you ever check in with this blog. But there is hope. They found the first biomarker / blood test that can diagnose CFS.