Category Archives: ME/CFS

How to Clean a Bathroom (with Severe ME/CFS)

Let’s say you have severe ME/CFS, and you’re married to someone who has a full time job, is your sole caretaker, and because of the severity of your illness, is also chief cook, bottle washer, launderer, yard maintenance guy, and … Continue reading

Posted in House & Home, ME/CFS | Tagged , , , , | 29 Comments

The Post-Appointment Post, 2013, Part II

Part I is here. Nasal VIP wasn’t the only thing that Dr. Cheney and I talked about this year. I’m sharing this grab bag of questions and answers because I know I always learn from what other patients ask him. … Continue reading

Posted in ME/CFS | Tagged , , , , , , , , , , , , , , , , , , , , , , , | 19 Comments

The Post-Appointment Post, 2013, Part I

It’s taken me much longer than usual to write this post because I got the idea of transcribing the recording we made of the appointment as a way to help me write. We’ve made a recording every year, but this … Continue reading

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Losing My Voice

A conversation at our house recently: “So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to … Continue reading

Posted in Life Before, ME/CFS | Tagged , , , , , , , , | 22 Comments

Brain No Go So Good

“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?” “Yes. And I suppose that’s an anecdote in itself.” … Continue reading

Posted in ME/CFS | Tagged , , , , , , , , , , | 29 Comments

New Bottle Paranoia Syndrome

One of the things that consistently makes life more exciting around here is my case of New Bottle Paranoia Syndrome. My present state of NBPS has reached its current form because of a long series of unhelpful surprises my body has … Continue reading

Posted in Life Before, ME/CFS, Uncategorized | Tagged , , , , , , , , , | 23 Comments

And So This is Christmas

Warning: This video contains a lot of disturbing imagery.  I know I’m late with this post. Would you believe that trying to have Christmas with the tiny store of energy ME/CFS allows me caused me to run late on writing … Continue reading

Posted in Life Before, ME/CFS | Tagged , , , , | 10 Comments

A Thousand Things

If you’re a healthy person, how many things do you think you do per day? Your to-do list at work might have a half-dozen things on it, but I’m talking about more than that. Maybe you run a few errands … Continue reading

Posted in ME/CFS | Tagged , , , , , , , , , | 71 Comments

Gratitude

One of the more difficult things to deal with about being this ill is the feeling of uselessness imposed by my physical limits. Even as long as I’ve been ill, I’ve never quite gotten over the guilt of not being … Continue reading

Posted in Chimp, Life Before, ME/CFS | Tagged , , , , , , , , , | 23 Comments

A Love Note to Congressman Daryl Metcalfe

“I don’t believe any legitimate voter that actually wants to exercise that right and takes on the according responsibility that goes with that right to secure their photo ID will be disenfranchised…[W]e have a lot of people out there that … Continue reading

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