A constant struggle

It's been a while since I posted something here. I've been struggling with migraines nearly every day for some time. I've somewhat stopped working because I can't cope. Even engaging in activities of daily living doesn't come easy for me now. 

I easily get fatigued mentally. And for a lot of days, I just want to sleep. My body/brain just doesn't seem to have much energy and isn't so cooperative with me. Would I like to do more? Most certainly. But I have to ensure that I'm listening to my brain/body. I don't want to end up in the ER again. 

It's a constant struggle. Individually, as I have to keep reminding myself that I'm not how I used to be, and that I need to adapt to this "new" body/brain. What doesn't help are the expectations from others, especially my family. More often than not, it feels as though they hold me responsible for the pain I'm feeling.

"You didn't drink enough water"

"You sleep too much"

"You aren't taking your medicine"

So many assumptions of things I supposedly didn't do - hence why I'm in pain. It hurts... a lot... to hear this. It's as though it's my fault that I'm suffering. 

Adjusting to this hasn't been easy, not for myself, and not for my family. I give them the benefit of the doubt that it's hard for them too, and they feel helpless. But more often than not, their words are hurtful and damaging to me. It adds to the emotional anguish I'm already experiencing. Many times I'd end up crying in my room, feeling so misunderstood and frustrated. 

I've tried telling them to stop assuming things. But I guess old habits die hard. 

A PLEA  TO CAREGIVERS OF MOYAMOYA PATIENTS

Please understand that things aren't easy for us - even day to day activities tire us out a lot more normal. We may struggle more to do things that we used to be good at. For the most part, all we want is your supportive presence. Making assumptions may seem like you are trying to get to the bottom of the pain we're experiencing... but it can feel like you're blaming us for our pain. 

A lot of us are trying to make things better for ourselves. We know our body/brain. We have to make many adjustments and to take sufficient rest. So please don't consider yourself to be the "expert" of our body and functioning. If you're concerned, please ask how you may be of help and emphatize with the person. 

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Man.. even writing this post is making me feel exhausted...