2 PANS kids fighting lyme and coinfections, our journey to healing

What about me!

What about me indeed… It’s 6:18 pm and I had just woken up from a nap on the couch, woken by the sounds of my husband emptying the dishwasher and starting dinner. I fell asleep about 5, saying “kids need their meds, I am just taking 5 minutes and then I will get them ready.” Yet, here I was, 2 hours later, off schedule and sleeping once again. I hate napping, it makes me feel like crap. This time was no different. Whenever I wake up, I have to open and close my fists to get my hands working, because lately the little fingers on each hand have a pulsing and prickling feeling to them. It’s a weird sensation because they are not really numb, I can move them, so it’s more like that feeling you get from sleeping on your arm. Anyway, I woke up feeling crappy and guilty about sleeping instead of parenting, guilt aside napping isn’t unusual for me, I nap most days and feel bad every single time but honestly, I am usually just too tired to resist 5 minutes here and 20 minutes there. Anyway, tonight after I unfroze my feet (because they also seize up when I sleep) I wandered into the kitchen to finish dinner. I try for my own sanity to just crock pot, slow roast or Instant Pot everything and today was no different. I was grateful I had put a large joint of beef in the oven before we left today, so at least that part was taken care of.  The kids are getting tired of eating “stew” and soups but my energy is so depleted by dinnertime (and we follow a Paleo diet meaning everything has to be made from scratch), gourmet meals are just not realistic. I do know they are going to get fed. It will be edible and organic and nutritious but other than that, I don’t really know what to do about it all. I just seem to be a slower, less energetic, less motivated version of myself lately. I have mentioned before that I have my own battle with Lyme, even though the official diagnosis is fibromyalgia, yet what to do with this information, I don’t know. I don’t have the energy to even think about it. However, the day may be coming soon when I do IEP meetings that don’t scare me Friday was our yearly IEP update meeting for B. Not going to lie, had very few demands or expectations. Was just hoping to...

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