[Written September 30th]
When I got sick, I started having horrific nightmares about my dogs. At least once a week every week for the last 3 or 4 years, I have dreamt that they’re in danger and I’m too weak or too sick to help them. Last night I had no voice. For an eternity, with little energy and full of sickness and while wrangling my smaller dog, I filled my lungs and tried with all my might to scream for Bowie, who was gone and in definite peril. Nothing would come out but a croak. I begged the other people in my dream to help, to shout, run, drive–do all the things that I couldn’t do–but nobody would pay attention. That’s always a theme in these nightmares: imminent death, crippling disability and nobody is listening, nobody is helping.
I woke up breathless and moaning, as I often do. This love is so fierce, sometimes I think I would take a bullet for my dogs. I cannot fathom having an actual human child. My heart would explode. Parents out there: to me, you are incomprehensibly brave, strong and selfless. And SICK parents–chronically ill and disabled parents–those of you that may have nightmares about not being able to protect/save/find/help/comfort your children–you live (and dream) through something I can only get a small glimpse of with my dogs. Hats off to you all, courageous warriors. And I hope everyone stays safe.
You guess correctly that the nightmares of not being able to do something for your children- from family outings to dreams of my children physically trapped behind layers of triggers, those nightmares are tortuous. There’s the day to day reality of not being able to help them, too. Not being able to care for them, go on outings, or even just hang out. It is definitely one of the hardest aspects of this disease.
Hang in there. How is today?
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Karen, plus being away from them in hospital! How are YOU today? Thinking about you all the time. I’m ok, getting my fifth immunoglobulin infusion as I type. 😊
How is the IVIG going? Any improvement? Any side effects? Any reaction problems?
I’m home from hospital now…but I’m rapidly getting back to the point where I cant eat again- I have to give myself a ridiculous amount of meds just to eat a cup of rice. And Im in awful pain for hours afterwards….makes it hard to force yourself to eat! And, to top it off, it seems like refined sugar is a no-go. Bye bye all those things I could eat when I really didn’t want to (cookies, ice cream, etc). I was consuming way too much sugar, and it will do me well to be off of it, but for me, a bowl of ice cream is WAY more motivating than plain crackers…. Who knows what will happen if I can get IV fluids and meds at home. It made SUCH a difference- I was trying to make myself reactive, and I was having a hard time of it…. Isn’t that a shift?