This morning I woke up thinking about my online reputation and what I would like it to be. When others read my poetry and personal blog posts (especially the ones having to do with mental illness, autism, or chronic pain/chronic illness) the things I strive to represent are honesty, openness, relatable vulnerability, realistic hope when possible, comforting solidarity, the healing power of sharing our pain, and the courage and inspiration to keep going, even when things feel hopeless.
However, since I myself struggle from mental illness and chronic pain, being transparent and honest means that often my viewpoint comes across as dark and bleak. I don’t try to hide that or tone it down when it happens, because to me, that is part of being honest and vulnerable enough to share what the experience of dealing with those issues is like on a daily basis. Putting a happy face on it would be lying.
My only worry is that sometimes the reality of dealing with daily mental and physical pain is that you can start to sound whiny. Part of me says, “well, of course, you are going to sound whiny now and then if you are in pain all the time! No shit!”, but for some reason our culture makes whining out to be such a negative thing that most of us want to avoid that look at all costs.
Maybe we as readers and audiences have to decide rather we really want full honesty and openness (even if it includes some whining and negativity) or if we pretend to want the truth, but in reality just want a short, scrubbed clean, feel good version of life. I know which I prefer, but I guess everyone has to decide for themselves.
It’s been a rough week physically. I had a CFS/ME flare-up, which feels a lot like mono if you’ve ever had that, or the worse flu you can imagine. During these flare-ups, I run a fever, my body aches horribly, I feel too exhausted to move, too exhausted to breathe, and if I sit up or stand up long, I feel faint. Trying to do the simplest tasks is overwhelming and can make me feel like passing out, even just putting up my dishes or trying to take care of my personal hygiene.
Yesterday I was finally feeling well enough to get out and since the weather was warm, my husband and I went for a picnic at a local park. We got subs and then after eating, walked the short distance to the lake edge. As you can see, it was pretty darn muddy:
I’m glad we went, because I needed the mental distraction, but now I am really sore and exhausted from even that short bit of activity. Trudging through the mud really wore me out because the mud sticking to my shoes made my feet feel like they gained 10 pounds, and I almost slipped and fell a couple times. It probably wasn’t the brightest idea to go, but mentally I needed to feel alive again, even if just for a little while.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.