I want to write. It feels good and helps me process things. I just don’t know what to write about or how to really get back on here and make it consistent in a way that works for me.
I don’t want to just vent or recount specific days or activities. I don’t want to write for an audience or limit myself in some way. But I do want to get back to recording our adventures and having a place of my own to hash things out. I have posted a lot over the years on Instagram so that has turned into a sort of journal, but I’m limiting my time there now so as to not be on my phone as much.
Right now my life is pretty consumed by medical stuff, basic homeschooling, and the day to day grind as a single parent. Each day blurs together and some are very painful while others are all about appointments. The repetition of figuring out what to eat, nagging about school work, what cleaning I can tolerate, and the bedtime battle. We’ve been in isolation for almost a year.
This time last year, I was still recovering from what I had been told was influenza A and had to move Wallace’s birthday party out a week. I was supposed to have had Chiari surgery the end of February but it was moved to April because of my illness (and then canceled due to the pandemic). Now, I’m planning for surprise birthday decorations and a virtual hangout party.
I don’t have any life goals because everything seems unattainable. So I feel unmoored and confused. School is on hold for me, but I was able to complete a class from fall of 2019 that had an incomplete. I’m just trying to keep us in our apartment and maintain some normalcy. We have food assistance and some cash, Medicaid, and a program to help with utilities. I’m applying for SSDI, but it’s a long process, made longer with the pandemic, and I’m pretty much guaranteed a denial the first time.
I live in an area with few specialists and can’t manage to drive far due to the extreme fatigue. I need specialists willing to figure me out, not just for my disability application, but because I am declining quickly. Appointments are also hard because of the lack of childcare help. My dad has been able to help with a few, taking Wallace for a couple hours, but they both have to wear masks.
Maybe I need to figure out little goals that will make me feel like I have a direction and a purpose. But besides the daily grind and doctor appointments, I’m at a loss.