Meg’s gut & ME/CFS

Wee hours adventures in dysbiosis — for the eyes and the ears

Meg’s late night attempt at filming her sleepless gut adventure finally bore fruit. Prepare for belching, briefly crude terminology, and a lot of pained laughter about the ridiculousness of the situation.

It’s been a struggle for me to come to a point where I could (finally) post any of the video I’ve recorded over years of being sick.

Tonight is the night!

Many people with ME/CFS and related conditions have learned to keep their head down and their mouth shut. Once a person endures a certain amount of persistent stress on account of public misconception, one’s attempts to interrelate and share can be… challenging.

And yet, we do not have enough faces for this disease and the many like it. The world needs to see this and hear about it. They need to see our faces — look in our eyes and decide if they are satisfied with what is happening to us.

It’s not just ME/CFS and it’s not just me. I feel compelled to add my voice and my face to show what too many of us go through alone in the dark. Every single day is this mess of dysfunctional systems; every single day is a dozen question marks about whether I will be able to get out of bed, whether I will be able to hold myself upright in a chair, how long it might take me to get to the bathroom in an urgent moment, if I’ll be able to eat well or at all, whether I will be able to find ways to support my body through strange and varied symptoms… or whether I will buckle from too much unavoidable pain and just spend the day sobbing.

There are millions of me, trapped in their houses.

They haven’t been outside in weeks, or months, or years.

Maybe my brain with its persistent low-grade inflammation can’t exactly do what it did before… but experience from past lives and long-cultivated habits of communication are still peeking through the peanut butter fog of illness and distress. I have to do everything differently — but there are things that are doable, when I’m lucky. That’s hopeful.

I feel responsible for sharing my story. If I have any skills left — if I can still communicate in any way — it feels important for me to do so.

I wonder, too… if exercising new neurons may even bring something back, as much as my body is limited now.

It’s possible. The brain is an incredible organ. Some of my symptoms definitely respond to creative, right-brained measures.

Worth a try. :-)

PS. That link up there, about persistent low-grade inflammation? It’s an article from the Solve ME/CFS Initiative about a webinar they ran that features Dr. Anthony L. Komaroff, a strong and brilliant voice in ME/CFS research. It’s an incredible video and well worth watching. We keep meaning to add a post about it, but haven’t managed it yet. Don’t wait, watch it now.

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