So I wrote a little about what dysautonomia sometimes feels like, now I want to share how I cope. If anyone reading is dealing with chronic illness I would love to hear how you cope too! Hands down the most difficult part about my situation is trying to mother two small children while being chronically ill. My babies brighten everyday and I couldn’t imagine fighting this without them but trying to be an active parent can also be my greatest challenge.
My biggest tip is prep anything you can ahead of time. At night, Curt makes sure everything I need for the next day is laid out/prepped. This, for us, means cleans bottles, easy items to serve fore breakfast/snacks/lunch, and medicines and anything I else I need easy access to during the day. There are lots of toys (and a giant baby gate) in our living room to provide a safe place to be able to sit Cambria down and let her free play. I take diapers/wipes/extra clothes to the living room when I first get up so I don’t have to take Cambria to the nursery for diaper changes if I am unable to get up. My other great helper??? Netflix! Seriously, it can keep Roland entertained when mommy can’t . My biggest piece of advice here is to let go of your mommy guilt! No I don’t mother in the way I would choose or had envisioned but my babies are loved beyond measure and they are healthy and happy. Does my heart break when Roland wants me to come to his room and play firefighter and I can’t get off the couch/floor/bed? Yes, it does. But I have to build a bridge and get over it. Seriously, somethings you have to accept you cannot change and let it go.
Some days all this prep is not enough and I can’t get up at all without passing out so what do I do then? Call Papaw of course! This is a last resort because it is a three hour round trip for my dad to come here but he is happy to do it when I need the extra help. We are also blessed that Curt has flextime at his job meaning he doesn’t have to start and end his day at a specific time. This has been a huge blessing! He tries to get in very early when I am sick so he can be home as early in the afternoon as possible. It is also important to mention that I have a husband that does his work, my work, prepping for the next day, clean up from the current day, laundry, grocery shopping, kiddie baths, etc… when I am unable to. He is amazing.
Of course there are many (many!) ways I deal with the actual dysautonomia so if you have dysautonomia and would like to discuss the specifics email me at jhudberg(at)gmail(dot)com. Here is to a great week ahead (clinks glasses) cheers!