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.
Disabling
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.
Enabling
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.
Committing
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.
Communicating
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.
Reinventing
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.
Oh that has got to be so incredibly frustrating to not be able to articulate your thoughts accurately or even to be able to hold onto them. I completely understand why you would give up on making commitments altogether but believe that most people will and do understand. I am sure it is so hard to feel this decline and easy to feel that others are judging you but I would certainly hope/think they are not! I wish I had the right words of encouragement or any sort of advice that would help… but I hope it does make you feel a little better to know that I think of you often and wish you all the best.
Some days are harder than others. But, having any little bit of encouragement feels like a whole team of cheerleaders yelling for me to accomplish something.Thank you, and I hope that you and your guys are having a good year in school.
Great post. I particularly liked your thoughts about enabling. I tend to negatively enable myself when I’m in a flare. It’s so easy to feel trapped in our bodies and like we’re missing the mark all the time. I have to remind myself so often that it’s ok to need to stay in bed to deal with symptoms. That’s not lazy; it’s being kind to myself.
Blessings to you!
Thanks for joining us again, Lisa! I like your perspective on good vs bad days and empowering ourselves! And I totally get the brain fog. I’ve been struggling with it myself. I find it more disabling than the pain in fact.
I agree with you about the brain fog. I hope it will lift for both of us soon!
Wow. I am so thankful that I read this blog. Thank you for sharing your story. Your story is important and it matters. I can relate to the brain frog, and the frustration of not only not getting better, but feeling worse. I hope that those around you are understanding of what you’re going through. Just showing up every day is a great accomplishment. If you’re interested in reinventing your fashion, maybe you can surf the web and just get an idea of what outfits you like. Thank you again for sharing!
You have certainly given me a ton of encouragement today! Thank you so much 🙂 I do have a supportive family at home and they are helpful and understanding. I hate that you have the same problems, because it gets really hard to deal with, day after day. Thanks for the ideas about fashion. I’m definitely not a fashionista! lol
Thank you for sharing your story. I know what you mean with the brain fog, it is so frustrating and a never ending battle. And I can relate to what you said about good days and bad days and how attitude can dictate how those days go. It is great that you recognise this though and have things that you can do even when having a bad day.
Best Wishes
Sarah x
I have problems with my speech sometimes, it’s really hard, you know what you want to say but the words don’t form. I used to have really bad myoclonus but my IVIG has stopped it almost completely (I do still suffer from Startle reflex though, someone dropped their keys in the GP surgery the other day and I nearly jumped out of my chair.) I love that you can find ways of enabling and empowering though. Keep that up.