Chiari Days, and swearing like a Super Trooper!

Since my diagnosis in March of this year, I have been doing my best to learn about – and to learn to live with – Chiari Malformation. You can read my first post HERE

Most of the time, I look at the positives. Yes, I have this thing – but I could have some other thing that is worse – things can always be worse. However, there are days when my body feels so fatigued and too damn sore to do much of anything. I have begun to name these ‘Chiari Days’, which really translates to ‘Fuck It’ days.

On the one hand, I know what I am dealing with, and that it is common sense to allow myself to rest on those days that are tougher than others. If I don’t, I will suffer the consequences of being, and feeling sore and absolutely, fucking useless.

On the other hand, I find myself feeling guilty for my ‘Fuck It’ days. As with all ‘hidden’ disorders, people can’t see what’s really going on. I don’t carry a sign that says ‘Neurological Disorder’. Even saying those words makes me fucking squirm.

Nope, the implications don’t sit easy with me.

Chiari Malformation causes painful physical symptoms; where the cerebellar tonsillar ectopia moves below the level of the foreman magnum. Now there’s some fine medical terminology to get your head around! Speaking for myself here, but I am finding that it can also mess with emotional and mental health, especially when I allow myself to dwell on what might happen next.

For my sins, I am a deep thinker. What writer isn’t?

I can only report on what it’s like to live in this skin, with this useless disorder, and I’ll get used to Chiari Days, eventually. I won’t stop saying yes to whatever opportunities and challenges rock up to greet me either – that would kill me altogether, but I’ll also have to stay honest with myself and everyone around me, and learn to be at ease with more ‘Fuck It’ days.

One thought on “Chiari Days, and swearing like a Super Trooper!

  1. Thom Hickey says:

    Whatever gets you through I support!
    Regards Thom

    Liked by 1 person

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