Its no surprise that I've struggled with my own health the last few years. I've had a trip to the hospital, a lot of fatigue, and seem to get sick at the drop of a hat. Knock on wood this is getting better now that I'm also using the IonCleanse by AMD , but caregiver fatigue is a huge thing in our community.
First, we have the PTSD around our child's regression - as I said yesterday, it is SOUL SUCKING to watch your child fade away from you. You dream about what they were like before and you grieve all over again. Then we have the guilt - over being the one to approve that vaccine, or the one to push preschool where he got the flu that was our back breaking straw or that if you had breastfed longer maybe he would've had the immunities he lacked... Then we have the compulsion to never stop searching. I cannot tell you how many lunch hours I spent (and still spend) reading medical studies that might give me a clue as to what to do. How many evenings after bedtime I continued reading studies. Then we have the constant level of hyper-supervision our children require round the clock. Having a child with autism is for many equivalent to having an 18 month old - no impulse control + big enough to unlock doors, etc is a very scary thing. Remember the time Dominic played with fire? I do - every time I cook. Then there's all the assholes that we have to deal with on a regular basis. I've gotten a lot more in your face with those kinds of people, my current favorite response is "Welcome to Autism". Most of them don't know what to say to that. I've also said "yeah, this is what happens when you vaccinate", which also makes people twitch. I do practice these in front of a mirror so they roll right off my tongue. We have to be so tenacious there is rarely a moment to rest.
My therapist tells me that my level of "anticipatory anxiety" is off the charts; comparable to her military veterans who saw combat. I have it easy compared to some moms I know. I've never considered killing my child/self because I had no support.
So how do I mitigate my exhaustion and manage my stress / anxiety levels? With the most astonishing support community I could have ever imagined. Granted - its primarily virtual, but its global. Anytime day or night, I can find someone online to unload on. I have met the best friends of my life doing this work, and I now make time to go see them regularly. Whether at a conference or just to visit, I make that time.