Try something different. Surrender.

After over a month it occurred to me that maybe just maybe this downturn has been caused by the break from my cpap. I guess, if I’m honest with myself, I didn’t quite believe my apnea was a problem. I sleep through my brain “waking up” 49 times an hour, but I don’t sleep through the cpap mask waking me up 20 times a night, so my subjective view of my sleep is that it is worse when I wear my cpap. What I know for sure is, my symptoms wax and wane in direct relation to how well I sleep. Although I know my ME/CFS was caused by viruses and the flu shot taking advantage of an extremely stressed and depleted body, I sometimes wonder, if I’d slept well my whole life and known about the apnea sooner, could I have avoided this illness?

When I went downhill in April, I reversed any changes I had made in the weeks before: I went back to Now Foods vitamin B2 and alpha lipoic acid, since I had recently changed brands. I stopped the Seriphos supplement, I stopped the Chinese herbs, I stopped driving anywhere, I stopped walking and doing stretches, I stopped taking baths since they raised my heart rate so much. But nothing has been working. I have to try something different. Since my health insurance is taking its sweet time approving my apnea dental device (shocker), it’s going to take well over a month to have it made. Verdict: back to the cpap. Keep your fingers crossed that this makes a difference.

My other plan is to surrender to this new low. Somebody on an ME/CFS forum recently said, “We may have lost everything in our lives, but WE HAVEN’T LOST OUR LIVES.” It stayed with me. I’ve spent 1.5 years fighting, investigating, grieving, pleading, hoping, wailing, warring… Again, time to try something different.

I’m sorry to throw quotes at you, but this, too, has stuck with me for weeks and it is my current inspiration:

Very little grows on jagged rock.
Be ground.  Be crumbled.
So wild flowers will come up
Where you are.

You have been stony for too many years.
Try something different.  Surrender.

~ Rumi


7 thoughts on “Try something different. Surrender.

  1. Great quote. Very meaningful.


    • E. Milo says:

      Oh good! Sometimes I roll my eyes at “meaningful” quotes, but lately I find myself catching my reflection in the mirror and thinking, “you have been stony for too many years.” This illness has changed the way I hold my face and made me a bit of an ice-queen, so it’s time for something different.


  2. Anna says:

    I’m sure this is a dumb question, but do you sleep with a fan? I was just reading an article about how it is the best sleep aid out there, and the cheapest. I use one every night and love it.


    • E. Milo says:

      I sleep with a air purifier, which sounds like a quiet fan. Most fans rattle in some way that makes me nuts and keeps me awake. Not a dumb question! 🙂


  3. Zuzana says:



  4. Zuzana says:

    In the devastation of your illness you are stronger and braver then you have ever been…


    • E. Milo says:

      That is very flattering and makes me feel calmer about this journey, thank you. I don’t know why I feel like I’m not handling sickness well enough.. I don’t feel brave or strong. I feel whiny and scared. I need to focus on the bravery. I love you. ❤


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