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.