Updated: Jul 23
One of the most frustrating symptoms I experience is fatigue, and it is also one of the most difficult to explain. There is very present physical fatigue, fatigue to the point that I feel like each breath is tremendous effort, my hands shake if I hold a coffee cup too long, and I am unable to walk long periods, but there is also mental fatigue that a lot more people dismiss. The warning signs for me personally of a fatigue flare is loss of executive functioning skills (attention span, regulating emotions, organization/planning, working memory, etc), and if I listen to my body and rest I am usually able to keep myself from falling too far into the disabling physical fatigue.
I used to push through it, just accept I'd feel like crap, and go on with working, socializing, and so on. For a long time, especially in college, I lived in this mental space where I convinced myself (with the help of external voices) that it was in my head and that I was just being lazy. This was aided by the comments that would be made by individuals close to me if I didn't make it to class, didn't attend that college party, didn't pull that all nighter. Over the past year I've really focused on accommodating my own body, shutting out the external voices, and worked towards creating a sustainable way of living for myself.
This isn't to say it has been easy. I don't feel guilty for taking a day off anymore, but what I still feel is disappointment in being unable to do something, and a decent amount of tension when I want to do something yet am physically or mentally unable.
That is where I am right now. I have many creative ideas, but I have been feeling a decline of my mental capacity over the past week and the warning signs of a flare. I want to shoot and produce work, but I also need to rest. It is this absolute desire to create coming from internally conflicting with the physical need to give my mind and body a break from processing that can create a lot of frustration. I know that the ideas will still be there if I don't make them, and that any external expectation to be making 100% of the time is bullshit, but I want to create. I have a burning desire to bring to life the images in my head, a creative itch that I want to scratch.
Overall, this past week there has been an underlying feeling of tension or anxiety. No wonder, with the state of the world currently. I've chalked it up to pushing out of my comfort zone a lot frequently and needing time to absorb the amount of input. A break from social media is in my future. I am excited by the projects I am involved with, but I am also feeling physical resistance from my body. I am still healing from surgery and I still have chronic illness, so my pace isn't quite what I'd like.
I recognize it is all a process and I am mostly okay with that, however I also don't subscribe to ignoring the fact that it is incredibly frustrating to want to do things and be unable to do them. Everyone experiences this, wether it is being prevented to visit friends because of a pandemic, or not being able to afford a vacation when vacations were able to happen. Just because my frustration comes from a physical disability does not make it any less valid, and sometimes I just need to sit with it for a while before picking myself up by my bootstraps and moving on.