Very Severe ME And The Intermittent Ability To Speak

Credit: Sarah Richardson

Someone living with ME used the analogy that they have a battery which
charges to 30 – 40%.

I have a battery which charges to 0.5 – 3%.
If that was the case with your mobile phone and you took it outside with you,
you could, for example, speak to your Mum quite clearly and intelligibly for
several minutes, when the battery would suddenly cut out…

You would then return home and be unable to communicate whilst the battery recharged. If it was your smartphone, absolutely all other applications and functions would also be impossible.

Unfortunately, no matter how long you wait for your faulty battery to recharge it will only ever reach 0.5 – 3% So it is with the fluctuating and variable condition of very Severe Myalgic Encephalomyelitis and hence the intermittent ability to be active and to communicate verbally.

Sometimes I can speak well and very competently for a few minutes, then my
energy is depleted and I’m unable to speak at all, often unable to move nor to
carry out any activity whatsoever.

Meanwhile your poor mother (in her 9th decade) doesn’t hear from her
daughter for months on end. Nor is she able to visit her. And so it is with all
relationships formerly enjoyed. The ‘conversation’ will never be completed.

Although imposed by the condition of Severe ME, talking slowly, quietly or in
any other way modifying your communication does nothing to help with the
insurmountable problem of the battery failing after several minutes.

Of note, and of great significance, is the fact that the most basic and
essential activities of living : control of heart-rate, respiration, ingestion,
digestion, elimination, thermoregulation, and maintenance of homeostasis
take a minimum of 40% battery charge.


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