Drinking From A Fire Hose

News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came the infamous Reuters article, and this week we’ve seen media coverage in the UK that is shockingly bad. On the happier side of the spectrum, we have the Emerge Australia Conference and the upcoming NIH meeting on accelerating ME/CFS research.

And it’s only Tuesday.

After the NPR story, I started mentally drafting an article about misogyny, ableism, and NPR’s shocking ignorance of the landscape into which they dropped that stink bomb. The Reuters article deserves to be demolished with a factual wrecking ball. I haven’t had the capacity to give the UK stories and critical responses more than a glance.

Meanwhile, I’ve been working on my analysis of NIH’s grant review panels and application approvals. As I collate the data from multiple FOIA requests, I am finding inconsistencies. NIH gave me data that differs from the data they gave another advocate. There are even inconsistencies among the responses NIH has given me. For example, in one response NIH told me no meeting was held on a particular date. But in another response, NIH told me how many grant applications were reviewed at a meeting corresponding with that date. Catching these errors takes a lot of time, and careful cross-checking instead of accepting NIH responses at face value. And when I find errors like this, I have to file additional FOIA requests to get clarification.

Amidst all of this, I am writing a book.

It’s all too much. I do not have the capacity to write thousands of words a day, or push forward multiple projects. My ME brain cannot multi-task or focus on more than one thing. Small interruptions, like a short phone call or text from a friend, derail my concentration and short circuit what I’m trying to do.

I am constantly asking myself, “What’s the most important thing I need to do?” Trade-offs are familiar to everyone with ME. Take a shower or answer an email? Pay a bill or cook some food? Read to your kid or do some stretches? Read a news article or research a treatment? You can only pick one thing at a time, and hope there will be capacity left for something after that.

Self-care is a necessity, not a luxury, for people with ME. The more I pay attention to my choices, the more I realize that I suck at self-care. Since I first got sick, I have consistently chosen to sacrifice what my body needs in favor of what my family needs, what advocacy needs. It’s a vicious cycle that leaves me wondering if these choices have made me sicker. How well might I be if I had put my own body first?

I am trying to do better. Now I ask myself, “If I can only write one thing, what is the highest priority?” I have chosen to write words for the book, rather than write words about all the controversies this week. I will watch the NIH meeting from home to save the energy of attending in person. I am asking the people I love for help and understanding.

We all have limits, regardless of health or circumstances. Everyone, at some point, has to choose to do one thing and sacrifice another. No one can have it all. People with ME, and other chronic diseases, have to make choices about activities others take for granted, but the principle is the same: what is next most important thing I need to do, and what other thing do I have to give up?

We need to rely on each other. I am learning to trust that even if I cannot participate in an advocacy issue, there are others who can. I am changing my focus from “What needs to be done?” to “What can I do?” It might sound like a distinction without a difference, but for me it is a tectonic shift.

So if you are struggling or overwhelmed, I see you. If you need to take a break from something, I support you. Do what you must to turn down the fire hose and drink from a water fountain instead. I’ll be standing right next to you.

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16 Responses to Drinking From A Fire Hose

  1. Rivka says:

    You will write a great book! Thank you for writing it.

  2. Mary says:

    Ah Jenny….
    This is JUST what I needed to read from you today. Thank you for using your energy to send us all loving care. I do totally support your decision: What can I do?

    I am English and have seen nothing about ME! Brexit is everywhere here and consumes us all.

    from Mary

  3. Christine Fenton says:

    Jenny, words I should have written myself – so relevant, now it’s time to hear them & act on them.

    Thank you for sharing hard won wisdom relevant to so many Advocates trying to put truth into the light.


  4. Christine Williams says:

    Thanks for this article Amy. You have my admiration for the writing you do so well – to synthesize so much information. As for me, I’ve now been sick 10+ years and at age 67, have decided to step away from my board responsibilities with SMCI. I want to save my energy for time with my family and friends.

    I will continue to look forward to your important thoughts and words.

    Chris Williams

  5. Steve Hawkins says:

    You do an amazing lot! 😮

    I can only observe with awe, as I gradually work nearer the top of today’s email and FB notifications, having only ‘caught up’ by skipping over January altogether!

    Anyone who has a life outside reading links from email and FB fills me with wonder at how it is possible. :/

  6. Gill says:

    Oh….you are right Jenny. This week in the UK has been utterly awful, so destructive of hope. Thank you for recognising it. “ Shockingly bad” is an accurate description.

    Thank you too for all that you do to support us and good luck with your book.

  7. My priority, after living out of a suitcase for almost 10 months due to moving cross-country, is to get back to my fiction. I have no interest in or gift for advocacy, and I might be able to contribute with the novels I’m working on.

    I, too, have been overwhelmed by finding so much stuff online. Getting angry because there is still so much negative out there is not productive – I still can’t believe the AIDS community managed it, and I can’t see how we are going to.

    For everything you’ve written in the past, continued thanks.

    I hope the book is coming along the way you need it to.

  8. Barbara McMullen says:

    I also support you in your choice to take care of yourself. Advocating or participating in family events at the price of your health is not worth it. You do not want to be bedbound.

  9. Pat says:

    Thanks, Jenny for all you do and
    For the wonderful person you are.
    You do so much for us.
    How can we support you?

    • Jennie Spotila says:

      Thank you for this kind question! The best support for me is to keep reading and sharing my blog posts. I may put out requests for comments or information from time to time as the book evolves, so it will be very helpful if you can respond to those too. Thank you!

  10. You made the right choice. I’m not back in that decision tree yet – still have a ways to go on Ampligen. And all this is so much harder with Bob gone and my kids on the opposite coast. Take care of yourself. Mary

  11. Roy S says:

    Jennie, I suspect that you were also the secret knitter for Harry The Nascent Berserker in the 4th picture here:


    Hang in there. There are a large number of great responses from many good people to this latest disgusting propaganda campaign from the Wessely School. And I was getting the same type of Catch 22 responses you are from the NIH about study sections in 1991.

    Has everything affected me? Well, look at me now!

    Oh, god, look at me now…

  12. jimells says:

    I’m not too concerned about the recent Wessely School campaign to discredit patients and advocates. It reminds me of the final scene in one of the Titanic movies: the crew is frantically setting off a final volley of signal flares as the dying machine slips beneath the waves.

    All that noise and light is supposed to attract rescuers. I think these hapless sailors will be very disappointed.

  13. Kathy D. says:

    I so hope the Wessely School is on the Titanic, going down.

    I didn’t know about the awful articles you mention above, but I will take a quick look. Can’t stress myself out on this stuff.

    Hope you can get rest and glad you are viewing the NIH conference from home, not using valuable energy to travel there.

    Yes, put your health first and take care of yourself. We appreciate all you to.

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