Thread on volatility and 'radical unsafety' in ME.
People with ME are labile - they can feel OK-ish at 3pm, deathly at 6pm, and OK-ish again at 9pm.
But let's talk about a different kind of volatility - one that #pwME and now #longcovid people fear the most.
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People with ME are labile - they can feel OK-ish at 3pm, deathly at 6pm, and OK-ish again at 9pm.
But let's talk about a different kind of volatility - one that #pwME and now #longcovid people fear the most.
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It's the volatility of sliding from 'moderate' to 'severe' ME over the course of a week and staying severe indefinitely.
I actually think there are 3 fears involved here.
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I actually think there are 3 fears involved here.
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First, there is the fear that you will get much worse, suffer more, and be more disabled.
This happens to patients frequently enough.
Sometimes there is a trigger, sometimes - and this can be especially scary - there isn't a perceived trigger.
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This happens to patients frequently enough.
Sometimes there is a trigger, sometimes - and this can be especially scary - there isn't a perceived trigger.
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But, even with an identified trigger, it may be unclear how to bring a patient back to their baseline.
Absence of remotely adequate medical care doesn't help.
At the same time, even patients with privileged medical access may find their doc shrugging their shoulders.
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Absence of remotely adequate medical care doesn't help.
At the same time, even patients with privileged medical access may find their doc shrugging their shoulders.
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Second, there is the fear that the deterioration will leave you radically unsafe.
Radical unsafety goes beyond disability and suffering. Let's take a few examples.
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Radical unsafety goes beyond disability and suffering. Let's take a few examples.
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You might experience paralysis or loss of feeling across your body.
Or, you might experience a loss of control over breathing and swallowing.
Or, you might lose the ability to speak.
What defines these experiences?
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Or, you might experience a loss of control over breathing and swallowing.
Or, you might lose the ability to speak.
What defines these experiences?
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It's the sense that they are on a scale the worst end of which is unsustainable.
'Unsustainable' might mean incompatible with life, or incompatible with a life worth living.
That's how I understand radical unsafety.
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'Unsustainable' might mean incompatible with life, or incompatible with a life worth living.
That's how I understand radical unsafety.
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Third, there is the fear that if the radically unsafe scenario did occur, you would need urgent medical help- but neither you nor doctors will know what it is.
This is the fear of knowing that you need to be in hospital AND knowing that being in hospital may not help you.
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This is the fear of knowing that you need to be in hospital AND knowing that being in hospital may not help you.
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Thanks for reading. I wanted to acknowledge this particular way people with ME live on the edge.
None of this makes me a pessimist. People with ME prove daily that there are ways to exist, persist and even flourish in this predicament.
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None of this makes me a pessimist. People with ME prove daily that there are ways to exist, persist and even flourish in this predicament.
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