In Remembrance

In honor of Memorial Day 2019, MS Mommy Blog is taking the day to remember all those who sacrificed all for their country. Our gratitude to them and the family they left behind.


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Redefining the Internal Narrative

When I recognized that I was addicted to my anger, I realized it was sustained by my internal narrative. I used a lot of nasty words to describe myself during my mental arguments. As Gary John Bishop said in his book Unf*ck Yourself, we are constantly having internal conversations whether we realize it or not. There was no escape from this negative internal narrative. When I recognized the hatred being spewed at myself non-stop, I knew I needed to focus on changing my internal narrative.

We are dealing with a chronic illness, so we are busy fighting/managing our bodies. For some of us, we are also fighting our minds which makes our journey to wellness that much harder. When our bodies betray us via exacerbations or normal symptoms, it’s easy for our negative internal narrative to rise up and leave us wanting to give up. I wanted to share my experience with my negative internal narrative and how it led to moments of self-defeat. At the end of this post, you’ll find more detailed suggestions for dealing with your own narrative.

Content warning: there will be talk about self-hatred and self-destructive behaviors. In the section “Using the word ‘Hate'” you will find adult language as part of negative self-talk. If you find this discussion triggering, please do not read any further. If you or someone you know engages in self-harm, please know that you can get help

When the Internal Narrative is Negative

From childhood, I had a negative internal narrative. I was taught from the very beginning that I was fundamentally flawed as a person. Every time I did something “wrong,” it had to do with me being irredeemably bad. Thoughts were not separate from actions, so if I had a negative thought it was the same as though I acted out on it.

As a child, I learned to mentally flog myself. While I was taught that I had the means to get out of my “badness,” I still had to follow a strict code of behaviors, thoughts, and actions. Deviation from that code meant I regressed into “badness,” and I was to prevent that at all cost. Mentally berating myself helped me manage any external conversations about my behavior because I pre-empted the impetus of the discussion. I took the power out of the other side by mentally hating myself and regained a sense of control.

What I was doing in those moments was setting myself up for a lifetime of self-hatred that I am just now starting to unlearn and heal from.

An example: as a child on the playground, someone would say something mean to me. If I had a thought of “well, I hope you fall over and hurt yourself” as a means of coping with my hurt feelings, this was considered a moment of being naughty. I wished harm on someone, and this was wrong by the code taught to me.

Because I wasn’t allowed to have a “bad” thought, I had no way to manage my hurt feelings. Desiring for a bully to get hurt, provided I didn’t actually retaliate, wasn’t a bad thing. It was a healthy way to acknowledge they hurt me and I wanted them to feel the hurt back. It may have naturally led to understanding why the bully was mean: they were already hurting and taking their pain out on me.

Instead, when they said something mean and I thought about them getting hurt; I realized that my desire to see them get hurt was “wrong;” and therefore, the bully was right about me: I was whatever horrible thing they said I was. So it wasn’t just the bully picking on me, I was picking on myself. If I told anyone about the bully and my thoughts immediately after the incident, it was reinforced that these thoughts were wrong.

The internal voice I developed over my childhood was angry and reflected the judgments I heard by adults. Often the judgments weren’t directed at me, but at others in similar situations as myself. I would compare myself to the people in these judgment scenarios and recognize a lot of similarities in myself: “that person claims to be following a specific code of conduct, but look what they are doing. It’s so hypocritical.”

Oh, I would think to myself. I always wanted to do that thing they are doing. I guess that makes me bad because I feel/act that way in private. In those moments, my shame increased and my internal voice would get louder about how bad I was as a person.

This angry, negative internal narrative turned me into a bitter, anxious, and stressed-out person. I burnt out fast. This lead to a deep depression in my early twenties where I struggled to get anything done in my life. Every missed opportunity was not a learning experience but a personal failure. Every failure was fuel to my “I feel worthless” fire. Rather than persevering in the face of self-doubt and failure, I gave in and wallowed in the thoughts of how I was a bad person.

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I’m Sorry, but I Can’t Remember: MS Mental Fog

I first received my MS diagnosis while I was in a graduate program for literature. One of the key components to graduation is the Comprehensive Exams. In these exams, it’s expected to memorize key dates, figures, concepts, and timelines to do essay identifications and write several seminar length papers with little to no help over 48-72 hours. Prior to the diagnosis, I knew I was struggling with memory issues, but I assumed it was from lack of sleep. After my diagnosis, I realized what I experienced was a form of MS mental fog.

Granted, post-diagnosis, my University was required to make accommodations for me, but my pride struggled to allow it. Acknowledging that I have memory issues is something I still struggle with today: as someone who needs their brain for their living, knowing that it isn’t working properly is a huge blow to the ego.

All of this is to say, that this post is one of my harder ones to write because of how sensitive I am about my memory.

What is MS Mental Fog?

In more technical medical terms, MS mental fog falls under the cognition category. Cognition includes information processing, memory, attention and concentration, executive functions, visuospatial functions, and verbal fluency. As listed on the NMSS website, more than half the patients with MS experience some form of cognitive dysfunction. You have cognitive dysfunction if you experience one or more of the following (but not limited to):

  • Struggle with processing information appropriately with one of your senses, like something tastes off or does not feel like it should.
  • Remembering new information, such as names or tasks.
  • Decreased ability to concentrate.
  • No longer able to multi-task or divide attention.
  • Inability to plan or prioritize tasks (important to unimportant).
  • Decreased ability to judge spatial distances or think abstractly.
  • Struggle to find words in a conversation or writing.

I know I’ve struggled with all of these at one point or another, with some of them being an everyday occurrence like the fatigue.

Dealing with Memory Issues

I assumed my memory issues had everything to do with a lack of sleep from graduate school. Like many of the “problems” I was having, the solution would be to simply sleep when I got a chance.

I got the chance on several occasions and while it did help with my memory because anytime a person is “well-rested” they improve to a degree, the problem did not go away.

But once I got my diagnosis, it was like a flood-gate had opened. I had successfully repressed and blocked out any acknowledgement that there were deeper cognitive issues up to that point. Now that I knew what was going on, I had an “aha!” moment and felt like my cognitive issues got worse.

I don’t believe they got worse, but rather, I finally acknowledged that they existed.

Teaching was a passion and I realized how much harder it became. Remembering simple concepts, answering common questions all became more difficult. I found myself having to plan out my lessons to the very minute to ensure all the important things were covered. Half my time was spent planning my classes while the other half was spent grading.

It was little wonder I had no time to work on required work for graduation. I didn’t push myself too hard because I felt useless with my memory issues. I think I hoped it would somehow go away or I would find a key to fixing it so I could get back on track.

Testing Acuity

I eventually got so frustrated with my cognitive issues that I spent a whole day testing my acuity in a lab associated with my neurologist’s office. I wanted to get a baseline of my abilities, but I also wanted to figure out if I truly was getting worse like I suspected.

A mentally trying day, I was given a series of tests where they would ask me a series of questions to test my memory. I had to rank things in various orders, come up with synonmns for words, and other tests that really stretched my brain power, reaching far in my mental reserves.


It was one of my least favorite rounds of testing, but I made it through it.

They gave me the results: I did have some memory issues, but I wasn’t nearly as bad as I thought. They mentioned the only reason why I noticed it was because I was in graduate school and needed to use my memory more than other patients, but it was small comfort.

They provided me with some insight on how I could manage my cognitive issues, but I was doing everything I needed to do already.

Seeing Some Improvements

When I got pregnant, I put concerns about my cognitive issues on the backburner. It wasn’t until after I gave birth to Jai and getting more sleep that I noticed I had a better time remembering things. It wasn’t perfect, but my cognitive issues were better.

I don’t know why I improved my cognitive abilities. I assume that during the pregnancy, my body was able to heal in the same way it healed the lesions I previously had.

I still am not at one-hundred percent. I struggle with memory recall or committing things to memory. Word recall is a struggle on a daily basis, and I still feel this barrier in my brain that prevents me from feeling like I have full access to my mind.

The Emotional Toll

This particular symptom of my MS takes a larger emotional toll than fatigue or numbness. Fatigue is omnipresent and numbness is a sad reminder of my illness – but memory fog really hits me in my ego and feelings of self-worth. It’s so hard to say to a friend “I know you told me this already, but I can’t remember what you said…” because it feels like I didn’t listen to them in the first place.

I tell acquaintances that I don’t remember their name or their partner’s name. I generally play it off as a symptom of “getting old” if I don’t know them well, but with closer friends, I will fully blame the MS. Everyone understand because I know everyone has their own form of memory blanks.

I am just painfully aware of the blanks which is what frustrates me so much.

The biggest toll the memory fog plays is in my relationship with Ash. I swear up and down that I remember a conversation in a particular way, and he remembers it differently. I get extremely frustrated because it feels like he’s not listening to me or trying to mess with me, but deep down I suspect that he’s right and I just can’t remember anything because of the MS.

Having memory issues is one of my biggest personal fears. When I learned about Alzheimer’s, I freaked out over the idea of losing control over my mind. MS creates the same sort of fear: with each exacerbation I have, I increase my chances of cognition issues becoming permanent. What if my MS takes me down the road similar to Annette Funicello? Would I know who I am or would I be trapped in my immobile body?

As with many other symptoms, I’ve learned to place my fears aside and work through the steps of self-compassion to manage the MS. I am keeping myself mentally active through reading, writing, teaching, and playing puzzle games (all recommended by the people who tested me), and stretching myself mentally often.

I still have my moments where I am extremely frustrated by my lack of mental abilities, but they are becoming more infrequent. I think that’s all I wanted to say, but I can’t remember.


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Featured photo credit: Michelle Melton