This was not a picture from today. It’s actually a part of a series of photos I’m taking that explore the intersections of being feminine, ladylike, strong, disabled, and all the irony that goes along with it.
It has been a BAD week. My mind isn’t great at telling me I’m very stressed as I generally feel calm. My body loves to tell me though. With autoimmune diseases it’s very important to keep stress low. General life stress sometimes can’t be avoided.
My gastroparesis flared very badly this week. Gastroparesis is a chronic illness where your stomach becomes paralyzed and can’t move food through, so it becomes stuck. My old neurologist kind of really simply put it that as my nerves are demylenating (fancy word for they are stopping working causing paralysis and pain), the ones that control my inside organs can too. My gastroparesis is most likely caused from neurological diseases.
Definitely not a glamour shot. I’m about authenticity though, and my whole life is worthy of a picture. I ate a tiny piece of fruit no different than my usual, but my stomach instantly swelled and the pain is stabbing and searing. This picture is actually when it had improved. Gastroparesis is normally controlled through diet, medication, or at more extreme levels, a stomach pace maker is implanted or a permanent feeding tube into the intestine. I’ve been lucky to manage mine through keeping stress at bay, noticing when I have to switch what I eat, and my ever annoying yoga 😉 that I love that I have poses to aid digestion.
I thought I was going to have to go to the ER as I couldn’t have a sip of water without swelling more. I remembered I had an old prescription I used to take before. I found it and after nearly a day and 4 doses, I felt better. I can’t take the meds regularly as it has a black label warning to cause movement disorders, which I’m still managing the one it caused for me.
I know gastroparesis can be brought on by stress. When my coping skills are taken and all I can do is lay here in agonizing pain not even able to do my self infusion for my other chronic illness, I ALWAYS go into what I call my “cess pool of self hate”.
The cess pool is when all those negative messages about me from childhood and negativity I’ve encountered as an adult start swimming in my brain as truth instead of as lies I’ve been told.
I’m lucky to have an incredible friend who messages me through these times reminding me I’m brave and am enduring the impossible all while wearing a million other hats taking incredible care of myself.
In that cess pool, I can kind of hear it, but worthless, failure, loser, stupid, ugly, liar, seems to overwhelm me instead. My friend is gentle and kind and brave herself to be on her journey and stay with me through mine.
So today, I finally felt a little better and could really embrace her words of the truth of who I am. As the day went on relatively mundane without any surprises or gut punching news, literally or figuratively, I took joy in the simple. I appreciated that it was boring. I didn’t push myself, although I still accomplished things, plenty of things, but nothing felt over the top. I didn’t push myself.
I didn’t stay in that cess pool of self hate long. It was maybe 48 hours that coincided with some pretty awful physical pain and would believe anyone’s defenses go away when you are in physical agony.
So I didn’t worry that nearly a week without exercise made some of my muscles turn to flab. I didn’t stress that my “to do” list still sits with plenty to do.
I did notice that I end my day smiley again. I have zero guilt I didn’t get it all done. I get ready to go back to sleep holding onto my friends written words about my worth, love, and value as the truth. Getting out of the cess pool so quickly when you have been trained to stay there is wonderful as complex PTSD isn’t an easy thing to manage. Throw some chronic illnesses on top of it, and I know that simply loving myself is a major accomplishment. Giving myself a break is the peak of the highest mountain.
And of course I did a little yoga stretching today. Only a little, maybe 15 minutes tops. This pose is called “happy baby”. You rock side to side while stretching each leg to your capability in your hand alternating. And I felt free doing it.