I was right about Em paying for overdoing this weekend. I like to be right but I wish I was wrong about this. She has spent the last 2 days in bed, terrible headache. Very grumpy, very withdrawn. She slept moderately well last night – I think we are learning to utilize the zanaflex to best achieve a decent nights sleep. Basically, she needs to take it then be ready to turn the light off and go to sleep. If she falls asleep with the light on, she is more likely to wake up and not be able to go back to sleep.
Hopefully, the worst she gets right now is feeling poorly and needing to rest up. But one typical result for an EDSer is to feel the effect of overdoing several days afterwards. In other words, she will be able to push through and do what she wants or needs to do – or more likely overdo – and she won’t immediately feel the worst of the pain. The worst comes 2 or 3 days after the fact. So, with any luck, she will get back to normal – or what passes for normal these days – relatively quickly.
I just wish she could have some time to be normal and not suffer for it. She has lost so much in her life – everything has been taken away from her. Gymnastics, sports, theatre, music to a certain extent. It hurts to see her suffer and it hurts to know there is so little I can do to make it better for her.