Chiari malformation is a really shit condition!

at least i have a brain

I Can’t concentrate.

Can’t sleep.

Can’t get a pain break ever.

My life would have nothing in it to require the recovery days I simply can’t have.

Living was.

Now just existing.

life could not be any smaller.

Ventilator needed to keep me alive. But it keeps me awake too.

Sleeping is impossible with continuous pain.

Unmanaged pain.

Unbearable pain.

The lack of sleep due to continuous pain as part of Neurological condition plus the then acquired brain Injures gained in brain surgeries and meningitises is a special TORTURE.

Nobody should suffer this

Nobody should waken in night every single night to find less painful positions. . . NOBODY.

Nobody should waken in pain to have to change pillows. NIGHTLY.

NOBODY should have to adjust a poorly fitting ventilator mask as they attempt to fall back to sleep in agony.

Then it is morning.

Another day.

Pain management?

Pain indifference.

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