Blogging, Disability, Lifestyle

What you don’t see

I’m writing this at 5 am. I haven’t felt able to relax and feel the tranquillity that sleep brings. There’s a pain in my head and neck. I’m not really sure exactly what’s happening medically speaking. I just know that it’s got everything to do with EDS. I have tears in my eyes, I’m alone and honestly just in pain.

The familiarity of this situation strikes me. This happens at least once a month without fail. Each time it might be slightly different. It might not be the pain in my neck and head, it might be somewhere else. Or maybe it’s just I physically can’t find a comfortable sleeping position. I find myself wondering why the hell I am writing this post instead of closing my eyes and trying to sleep.

I realise that I know why I’m writing this post. It’s because I can’t tell anyone right now what’s going on. It’s basically the middle of the night. It’s not a physical or mental crisis that needs immediate attention it’s just how it is right now.

I also know why I’m not writing this post. I’m not writing for attention. I don’t want the world to ever dare to pity me. I just want to feel understood. I’m choosing to give a voice to a side of my life that anyone rarely gets to see or hear about.

I know that things will feel a bit better after sleep, rest and a bit of care for myself. My body and mind will feel better. Not fixed forever. However, I’ll be in a mental place where I can better accept the way things are for me.

Because honestly, at this point, I feel a bit unbreakable (and yes that was a cute little Kimmy Schmit reference).


Thank you as always for reading. I hope by sharing this personal perspective I’ve given a bit of insight into some of the regular struggles of being chronically ill.

What are you struggles and how do you practice acceptance?



5 thoughts on “What you don’t see”

    1. Thank you so much Mary. I’m sorry you’re also going through chronic illness sending you love and encouragement too.


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