This post is part of a group of blogging friends who all have chronic illness. We share our posts at A Chronic Voice.A great many thoughts go through my confused head each month. The thoughts are confused because of brain fog, which I can feel, and cognition issues, which I don’t feel, but embarrass me when I try to speak. Yes, I feel much less intelligent because the smarts in my head don’t ever come out right. My sentences come out with the words mixed up and short phrases don’t come out at all.
Sometimes when I speak I’ll just say the first word in a sentence and then freeze, nothing coming, so I just say, “uuuuuhh” and it’s humiliating.
My worsening cognition is disabling. My body getting more illnesses is also disabling. I’m now experiencing Essential Tremor and Essential Myoclonus. One of these days I’ll have a big jerk with a drink in my hand and I’ll end up spilling it all over the place. It’s a dread that this can get worse.The doctor said that the Myoclonus won’t improve unless I take Keppra. Is it worth it? Another disabling condition is CKD. Chronic Kidney Disease shows up when your eGFR and ratio of creatinine gets low enough I honestly don’t understand much about this. The last two years I’ve been in Stage 3 and was back in 2019, too.
I had more bloodwork to check my kidneys and the results came back on Saturday. I looked up the words, especially the ones that were flagged as abnormal. When the Nurse Practitioner called me today, his take on it was very positive. If the number of the terms had 5 things that it could mean, he always picked the thing that was the most benign. He had no proof of that, but just wanted to be positive. He does this everytime I go there. They’ll check the kidneys again in one month.
In Wikipedia, I found this perfect quote: “In psychotherapy and mental health, enabling has a positive sense of empowering individuals, or a negative sense of encouraging dysfunctional behavior”. Wikipedia
This perfectly describes how I find myself when I feel trapped in my disabled body. When I think about how my body is letting me down and everything I’m missing because of my illnesses, I spiral with a negative attitutude and then I really am encouraging a continuation of dysfunctional behavior. I may just live in my pity party and eat emotionally. I might just stay on edge and snap at everyone, which just pushes them away. I could just give up on any improvement and stop trying.
If I let myself be enabled with a sense of empowerment, I will be more likely to look at good days as opportunities to experience something I’ve wanted to do for a long time. If I’m having a bad day, I can use my sense of empowerment to create something beautiful in my bed. I could do some sketches or color in the pretty adult coloring books.
This is a word that is very hard for me, although it wasn’t hard at all when I was well. When I was well, it was very easy to commit to events, leadership roles, performing, or filling in for someone. I never make a committment anymore because I have had to cancel so many times. It’s so embarrassing to let other people down when they counted on me to help. But now even if I feel good 2 hours before the event, I may be very ill at the time of the event.
As an introvert, communicating has never been my best point. Now, that I’m on so many drugs that affect me cognitively, I have a severe decline in my ability to communicate. Even when I’m just trying to talk with my immediate family, I can get so turned around. I embarrass myself so much that I talk less and less in company. I know that’s not the best way to improve my communication skills, but I don’t know how to fix it.
The first time I heard someone use the phrase “reinventing herself” it was the press talking about Madonna. I think that often we are reinvented automatically when we go through various life stages, such as: becoming a mother, grandmother, or widow.
I’ve always stayed the same. When my high school friends see me they always say that, and I think it’s true. I would like to have a little more variety in my style,but I don’t know much about fashion nor the extra money to blow on wardrobes.
The biggest change I’ve gone through is going from a fairly well person to a very unwell person. I could write a book about all the illnesses, symptoms, appointments, and diagosis.
I’m going to keep trying, but even when I write those words, I don’t think I can be successful but must try anyway.