Love, Poetry and Revolution - Monday 12th February 2024

After eighteen months of stability, it's been a while since the focus of these posts has been E, though that hasn't been the case in real life, of course.

This past week has been very troubling with the onset of seemingly regular small seizures.  From our perspective we've been struggling to know if E's in pain and/or suffering discomfort, but increasingly there have been signs that she is.

This morning I called the District Nurses to explain my concerns.  Whilst the nurse was here, E had several mini-seizures, and the nurse saw these and validated what I've been seeing. E needed pain killer and relaxant and she seems more settled, though there are still signs of seizures even with the medication.

The nurse is going to contact both the Sue Ryder nurse and the GP, so I guess we'll have to wait to see what the next steps are.

Against this backdrop, life goes on, though at an elevated level of agitation.

Julia Holter /  'Spinning'  / 'Something In The Room She Moves' (forthcoming)


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