I’ve been working part time for about a month. I’ve been curious to see how the dysautonomia/POTS would react to a schedule. I enjoy having purpose to my day, and a light scaffolding of meaning and achievement seems like a good thing for mental health, even if the job is much smaller than others I’ve held. An admin job is about what I can handle right now. It is simple.
But my energy has been extremely low these past weeks. I am following the doctor’s orders, walking 2-3 miles a day, drinking 2 liters of water, meditating, following my pristine diet, yet I feel like I need to sleep all the time once again. I walked to the store on the beautiful 80 degree day this week, and barely made it home, shuffling along like an old woman. What is happening to me? I am terrified. I am terrified. I am terrified. Will it get better? Will I remain in this limping state, only able to work a part-time hourly job with no benefits?
The credit card debt grows. The disability appeal process extends. Breathe, yes, breathe. When I am scared to this degree, all I can do is ask for help from greater beings beyond me. Beings that I cannot see, but nonetheless must trust are there. I wish I could see them and meet them now.
I am 44. I am a trained yoga teacher. I have an extremely healthy lifestyle, and yet, here I am, living with the mystery of this illness. Did I do something to “create” this illness, per The Secret? (I’m back in the “Failure of Will” explanation.) Is it epigenetics, coming from my parents’ emotional turmoil? (Ok, better. There is science emerging around the effects of stress on our DNA. But I’m pointing a finger. Not helpful). The unknown invites a million unanswerable questions.
Only Vanderbilt and Johns Hopkins seem to know much about dysautonomia. I don’t think funding or interest is high for this illness, which seems to be true for autoimmune syndromes in general.
I went to a POTS support group page on Facebook yesterday, as there is no physical group in Portland as far as I know. I was sad to read that a young and vibrant (or formerly vibrant) MIT student and athlete had committed suicide, apparently because of POTS. I was already feeling the fog of dread move in, and this sad news didn’t help. It is so important to have support and understanding in this world. For an INFP like me, the risk is in trying to process it all internally and alone, in the magical inner world.
But the inner world is also at times a confusing death trap. I must remember to go to the outside world too. The glittering trees! The delight of a good book. The little collage project. The cat I adore. The glorious world, just being itself. Oh all things like this, I need your help!