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

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Don’t say all this rubbish and stop thinking.

Thank you for letting me rant, dear readers. You’ll be happy to know that I just lay down for my morning meditation and the annoyance and frustration at the doctors has dissipated. Their reasons for not wanting to do new blood tests are logical and I actually agree wholeheartedly that there are too many tests being done and that the discovery of harmless anomalies lead doctors and patients down a rabbit hole of more and more invasive tests and more money spent and time wasted… I get it and I agree. I am desperate for a discovery, though. Because I had a false positive malaria test, I keep wondering if one of the other tests I had was a false negative. I’m desperate for a eureka moment.

And, when it comes to all those physical tests that the doctors didn’t do, I will choose to see that as generous. I’m not sure what all the tests entail and what conclusions can be drawn from their results, but I do know I’m not worried about my balance (except insofar as I get dizzy every time I stand up, which I’m used to) and brain fog is about 10th on my list of symptomatic concerns. So, CF Doc, thank you for being generous enough to not subject me to tests. Thank you for noticing how slumped I was in that chair and understanding what that must mean and choosing not to subject me to any energy-draining diagnostic tests.

Oh, and thank you for caring about my mental well being. Meditation is doing more than your psychotherapist ever could, but I’ll still go to see her in case she has some special insights into coping with chronic pain.

There. My Zen moment. See what quiet introspection can do?

How long will you think about this painful life?
How long will you think about this harmful world?
The only thing it can take from you is your body.
Don’t say all this rubbish and stop thinking.
~Rumi