Zero Visibility a.k.a. Brain Fog

One of the most amazing things about the human body is its ability to adapt and overcome, especially with chronic illness. In time your brain leads you to believe that most of your symptoms become your new ‘baseline’ (as I call it), because let’s face it, it’s not really your new ‘normal’. Cognitive impairment or ‘brain fog’ as it’s more commonly known, likely has you pulling out your list of symptoms at every new doctors appointment ensuring you don’t forget your new baseline symptoms. As you nervously go through the list the doctor is likely looking at you as if you’ve seriously got to be joking.  I found this ME/CFS and Fibromyalgia handy dandy symptom list and took the printed version to my last appointment (crossing out the 14 out of 144 items that didn’t apply to me). The doctor looked it over in front of me and then looking at me straight faced said, “You can’t show this to doctors. They will think you are crazy. It’s overwhelming.” To which I said, “Yes, having all those symptoms is overwhelming.” Needless to say everything else he said was a blur because I knew that he wasn’t on my team. Regardless I was thankful to have the list, because at the end of the day whether he wanted to roll up his sleeves and help isn’t something I can control, what I can control is being totally honest about my symptoms at every appointment.  When you have SO many symptoms mixed with brain fog it’s hard to remember them as they become your new baseline.  As a shy, introverted person it’s even harder to be honest about each and every symptom for fear that people will think you are attention seeking or one of the myriad of labels doctors have for people when they don’t have answers for them (yes you are sensing a little hostility aimed at doctors). I can’t encourage you enough to be honest at your appointments, because that’s the only way we can continue to spread the word about what this illness does to our bodies, even amongst the fog.

If I’m to be 100% honest I don’t actually like the term brain fog.  In my opinion it’s like calling a lady a girl.  It’s demeaning and trivializes a very frightening symptom. Although I take it in stride, laughing at my forgetfulness, and actually using the term myself, I feel like it’s not a joke, it’s scary and it’s life altering in some very negative ways.  We don’t know when it will stop, nor just how much we will forget.  Will our current coping mechanisms of lists everywhere we look and setting alarms and reminders for positively everything requiring such always be sufficient?  I used to be sharp, intellectual abilities came very easily to me, peers used to give me a hard time because I didn’t have to study and now? Now I can’t remember the name of the thing in my hand, or that I was doing something, or that I left the water running, or what I was saying.  My mind simply refuses to connect from one thought to the next, and the worse the fatigue the worse the impairment, it comes on instantly leaving me dazed, confused and searching for the next thing to say like a lost sailor searching for the lighthouse.

When my mother passed in 2002 I read a lot about grieving as the analyst in me wanted to learn how to grieve ‘properly’. I was terrified as my mind numbed. But I learned that that was simply my body’s way of protecting my heart through this awful experience. I also learned that you can learn all about grief, but that knowledge isn’t going to make your mind sharp again.  I would often drive past my destinations, or just feel lost in space.  But in time it did all come back to me, for about 12 years.  And then one day I awoke and my mind felt like it was grieving again, but what?  Did it know before I did what I was about to lose? What was it protecting me from, and if in fact it’s protecting to me, what is it still protecting me from?

Considering that scientist are still trying to figure out cognitive impairment I cannot pretend to understand the symptoms that come along with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis and Fibromyalgia. But I did find this article that explains that researchers found clues in the spinal fluid of CFS patients and confirmed that this symptom is not ‘made up’.  We knew that though. We know everyone forgets things.  We were normal once too.  We remember locking ourselves out of the car or forgetting what we were going to say, and it is because of that that we also know this is very different. It’s a complete lack of remembering things.  Like asking someone how their day was, several times, repeatedly because you have no memory of having just done so, nor their response.  It’s people looking at you like you are lesser because you struggle for words, for memory recall.  It’s being talked down to because you simply do not have the energy to correct people or stick up for yourself.  It’s distancing yourself from people because you don’t want to look stupid when you can’t keep up with the conversation or you don’t want to be embarrassed by what you say. It’s being lost in a fog, like driving down the road on a foggy night with zero visibility, never knowing if the fog will clear. For me it’s not being able to work, nor drive because my mind doesn’t keep up with the speed of the car and necessary reaction time. Some days are better than others, when I’m more fatigued my brain is simply mush.

I’ll close by saying please take your lists to doctors appointments and be honest folks, about every single symptom.  If we don’t tell them, they will never know. And when they give you a hard time stand tall because you are standing up to a bully.  Be proud of yourself for taking good care of you when it’s highly likely you were terrified to come to the appointment at all, but you did.  You are a rock star! And keep making those lists of to-dos, calendar everything, and use that timer every single time you are using the stove or toaster.  The microwave is ahead of us on this one! 🙂 Most importantly be kind to yourself, you are doing the very best you can.

Thank you for reading along!  Feel free to comment on your experiences with brain impairment, how you handle your symptoms lists at the doctor or just any old thing you feel like talking about. 🙂

Here’s a little painting from this last week, because painting makes me happy and I like to share that happiness with YOU.Favorite Shell: Seashells are all my favorite :)

 

 

 

 

22 thoughts on “Zero Visibility a.k.a. Brain Fog

  1. The last time I took a comprehensive symptom list to a GP she tried to brush me off as crazy, made fun of me and finished the appointment with “thanks for the list – it was really handy!” Yeh, never again.

    Liked by 1 person

    1. Thank you for sharing that and I’m really sorry that you too have experienced being bullied in a place where the people employed have literally taken an oath to first do no harm. I truly believe that when this illness is finally uncovered for what it is, from the central nervous system to the brain, and people are better educated, then and only then will we not be made to feel like we are making it all up. How can millions make up the same symptoms? They can’t, and they don’t. Some day, some day…

      Liked by 1 person

  2. Great article. Brain fog is so tough to deal with. Especially when like you say, we were pretty switched on before. I find I forget things all the time and if I don’t write it down it’s usually “gone” out of my head until it’s too late! Following a conversation is also tough. This is a very timely article as I have an appointment with a new GP tomorrow – yikes! I always try and make a list before I go in but I really like the symptoms list – thanks very much for that 🙂 xx

    Liked by 1 person

  3. Reblogged this on Lavender and Levity and commented:
    I read this post less than four hours after I wrote a post that included the line, “I bet fibro can make you faint, too.” Well, per this symptom list, it absolutely can. I procrastinated like the ADHDer I am in reblogging this, but I felt the timing was too coincidental not to share.

    Liked by 1 person

  4. I am so happy to read this, not because it’s a happy thing but because I used to have an eidetic memory and now I can’t remember anything, like ever. I also paint to manage my fibro and chronic daily migraine. It makes me happy and inducing artistic “flow” is the only time I can really escape from my symptoms.
    Thank you for writing this!

    Liked by 1 person

    1. It warms my heart to know it made you happy, in a ‘me too’ kinda way. But I’m sorry to hear you can relate and can only imagine your frustrations. What a blessing painting is. It really is this amazing escape. Hoping your day, or what’s left of it, is enjoyable.🌸

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  5. I’m very new to brain fog and it’s very difficult for me to explain this to my friends and family. It’s more than I’m just tired but I’m too “tired” to explain it.

    I actually had a very bad car crash (I’m fine, very lucky) just a week after I was diagnosed because my brain power wasn’t up to making critical decisions on the road. It’s a very weird place to be after being so switched on your entire life, and scary to know that this will be it for the rest of my life.

    Nice post. Thank you xx

    Liked by 1 person

    1. Thank you for reading and I’m sorry you can relate. Brain fog seems to seep into every area of our lives, turning things upside down in it’s path. It’s not something I’ve been able to accurately describe to someone who doesn’t have it. And you are so right! Taking our precious energy to try and articulate it seems such a waste a lot of the time. I’m glad to know you are okay after the crash. I’ve been in a few (pre-illness) and they are terribly scary. Now there’s no way I could drive as I feel like someone who has had too much to drink when riding in the car. I remember vividly the last time I drove and had to pull over…I didn’t realize that would be forever. Although I still hold out hope that one day I’ll drive again. It is incredibly difficult to give up that independence. Thank you for your comment and hoping this finds you having the best day possible. 🙂

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  6. I have found doctors almost always look down at you for bringing in a “list”, and honestly I have no clue why. You would think that would be helpful but I always feel like they think I am trying to self-diagnose and override their authority over the diagnosis of my illness. I sigh about it now, but it used to me make me feel very angry and humiliated when I was treated with such condescension.

    Your mental impairment due to fibro/CFS sounds very severe indeed, and I am really sorry to hear about this. :/ Although I have only been wracked with a much milder version of “fibro fog”, I thought I might share some of the things that helped me. I hope, if nothing else, that it gives you some ideas for things you may try. https://fibronacciblog.wordpress.com/2016/10/23/overcoming-brain-fog/

    Take care! ❤

    Liked by 1 person

    1. Thank you for reading along. And yes, most Drs don’t like lists. I have wondered if they are lazy…which is odd because, well, med. school is not easy. It’s like they get through it and are all taxed out. Not all of them of course just the ones I’ve seen recently. I’ll never know. All I’ll ever really know is how it feels to be made to feel a bother by someone you went to for help. I’m sorry you can relate, I had a feeling it wasn’t just me. Someday maybe the check in will be computerized where you input your symptoms and the office visit will be your results printout and of course an rx.

      Thank you for the link. I’ll check it out. I take my brain health pretty seriously. I exercise it, feed it right and try to oxygenate it best I can. Sounds like a pet😁 I read this great book about brain health many years ago but for the life of me cannot remember the name.

      Wishing a fog-free day!😊

      Liked by 1 person

      1. Love your idea of computerized Dx! Basically, an official version of WebMD whose Dx and Rx pharmacists can respect. 😉

        It’s awesome how you have really taken the reigns on your cognitive impairment and are consciously working to keep your brain sharp and clear. Have you heard of the brain/mental exercises people sometimes do to combat chemo-brain? I wonder if you might find those of any use.

        Liked by 1 person

      2. I haven’t heard of chemo-brain, nor the exercises. I’ll have to check that out. I’m trying to keep my brain as sharp as possible partly because I just know they’re going to find a cure for CFS while I’m alive and there’s so much more I want to do in life once I have the energy. Thank you for the suggestion!!

        Liked by 1 person

  7. I had terrible experiences with brain fog, and i too dislike the term because it does nothing to really explain what it actually feels like. I’ve had times when i’ve woken up and literally cannot remember how to put my knickers on, even though i know i must know! I stood in a court room for over an hour (appealing the decision to stop my sick benefits at the time) explaining how it felt, and showing the calendars on my phone reminding me to do the most normal things! Thankfully they were very understanding. I’ve been to consultants with lists of symptoms who have told me if i really experience all of these then why am i not ‘suicidal’ by now! Its crazy what you have to deal with when your suffering like that. Great article

    Liked by 1 person

    1. I’m sorry you had to go through that in court and have to endure cognitive dysfunction. It’s not only frustrating but scary at times. And it’s difficult to explain to someone who has never experienced it. I’m glad to hear your results in court were favorable. We are a strong bunch, that’s for certain!

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  8. Thank you for this article. Is it terrible that I feel slightly better about my situation after reading about yours? I’m sorry if is, but I can so relate to this! But I can still drive. I can still function most days with no one knowing/noticing/recognizing that I’m desperately making lists and trying not to lose focus. Until I get home, hit the wall, and give up- tomorrow is another day. It will be better tomorrow.
    In the morning, I can write, read, cook, make decisions, understand. When I hit the wall, I can’t.
    I don’t dare use the stove unless I DON’T leave the kitchen. Even when I tell myself- do NOT forget the pot is on, if I leave the kitchen, all bets are off.
    So, I’m sorry if this is terrible, but thank you for this article; I feel better for reading it.

    Liked by 1 person

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