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Brain Fog (seen from the inside out)

This is a post from a friend of mine, Carole Byrd. We met in an on-line group called Gaia and then in person at a brain injury conference. Carole is fabulous and eager to have others learn from her experiences, so I invited her to share what she's experienced and learned.

Carole will tell her own story in the post that follows, so I won't do it here. But I did want to share that what makes Carole special is that she is a "fighter" in the best, most productive, sense of that word. She worked hard to regain as much as she could, she worked hard to change her attitudes toward what she couldn't do the same way anymore, she worked hard to feel productive and happy.

I can't begin to tell you how much I respect her and how delighted I am that she has agreed to be a regular poster on our blog here.

Enough from me! I'll let her speak now...it's a little long this time, but I think you'll see why and how it all fits together. Don't stop before you get to her journal entry!

And do share what you learned from her -- questions you may have for her -- thoughts you want to share around her story.

Thanks!

___________________________________________________________________

This is an attempt to tell you what it feels like to live with/in Brain Fog, what I was actually experiencing moment to moment.

In 2000, I suffered two brain attacks that left me with Brain Fog. It was like the aliens had come and reprogrammed my brain or had stolen vital operating parts. As I lay in the hospital emergency observation for five days, I hardly moved. It was very peaceful and my mind was mostly blank though I watched and heard everything going on around me. I had no concept of time passing.

When I first got out of bed and tried to walk, I found myself leaning backwards and taking long steps and hanging onto the curtains and other beds to keep from falling. A physiotherapist was called in to assess me and he said the messages to my brain were being scrambled and short circuited. No one told me that this would also affect my ability to walk, perform other physical tasks, and understand instructions.

They discharged me in a dazed condition, no physiotherapy (there was a one year waiting list). My family thought I was “OK”, because there didn’t seem to be anything extremely wrong with me, even though I could barely speak, my right arm hung down, my hand was curled in a claw, and I was dragging my right leg. I was to “rest at home”.

At home, I lay in bed hardly moving and with next to no thoughts in my head and it was very peaceful (perhaps the brain’s way of resting and healing itself). It was only when I attempted to do anything that I realized I was in real trouble. It took me about 10 minutes just to try to stand erect and then move forward, because I felt very top heavy. I would bump into everything and ended up covered in huge bruises.

It took me forever to get dressed. Clothes were an enemy, and just getting dressed was a huge challenge. Each piece of clothing was a mystery –how could I get it on my body? Each piece was turned round and round, upside down, until I could find a Front and a Top. Then I knew if I laid it on my lap and flipped it over, I could slip into it. It took me at least 15 minutes to figure out how to put on my socks.

An occupational therapist came and did some tests and said I had “apraxia”.

She gave me energy savings tips, explaining that if you couldn’t do a task automatically, your brain uses up 6 times the oxygen to figure it out. She told me to keep trying to do stuff because the brain circuits might reconnect, or create new pathways.

Her tests showed that I could not distinguish between background and foreground. This visual disturbance caused confusion and distress in doing simple tasks. Trying to sort silverware into the drawer was impossible, as I would forget what I had in my hand after I had looked to see where it went. Anything in a heap was visually disturbing. The only way I could fold my laundry was by it being in a dark garbage bag and taking out one piece at a time. Simple things took forever to do. It took me about 10 minutes to peel one potato and many times I would slice myself with the peeler. Even small tasks were exhausting.

Walking required extreme concentration and adjustment – I kept drifting off to the left, so I would purposely walk to the right so that I would end up in the middle.

Everything distracted me, a car passing by in the opposite direction would totally confuse me about which direction I was heading.

Anything that moved caused me confusion, so it was impossible to walk through a crowd without holding on to another person. It was hard to cross a street because after checking for traffic one way, as soon as I looked the other direction, I wouldn’t remember what I had previously seen. Many times, after looking back and forth I would just go for it, and would hear the car horns blaring and the cursing.

Going to the corner stoplights was just as bad because if I moved my eyes away for one minute, I would get all confused about what colour the light was, and I would have to start again. It was dangerous to go out alone.

I want to take a minute to tell you what the brain fog felt like. It was like my head was stuffed with grey cotton balls or cotton candy, and there was a constant humming like one would hear from a nearby factory. Processing information was absolutely frustrating – written instructions, or worse, spoken instructions because I could not make a mental picture of the whole thing. Nor could I remember the steps.

On a visit to the doctor, the nurse said, “take off your… and watch, you can leave on your….. and put your ….on the chair, “ and left. I panicked trying to reconstruct. What was I to put on the chair? ..not the watch, ok, and finally in tears, called the nurse to stay with me and tell me step by step.

I could not remember numbers and even had problems visualizing some of them. After 5 years, I finally can dial a friend’s simple phone number without looking it up. I still cannot remember the bank account number I’ve had for 4 years.

Then there was the problem of over-stimulation. Too many sounds, too many voices talking at once, too many colours, too many patterns, too many people moving. This made it difficult for me to go out socially in crowds. At times, I would break down and run away to get relief in the silence. I gave away coloured, patterned clothes and linens and replaced them with neutrals.

I had a lag both in speaking and hearing. I could not process what people said fast enough. When I spoke, it was staccato and I finally figured out that I was going through a sequence, hearing the words. figuring out what they meant. figuring out what was the appropriate response, finally actually forming the right words to respond appropriately.

My sessions with the speech therapist were torture because he had his standard bag of tricks that he wanted to stay with , and was not the least bit interested in WHY I was having problems processing what he said and was I getting far behind and into overload as he kept talking.

Journaling was mentioned and I think this is a very valuable tool, for many reasons. One can look back and see how much progress has been made. I would like to share a piece from my journal about a year after my attacks:

JOURNAL ENTRY#1 Feb. 2002

"I’m so…….?frustrated? frightened. I wish I could just “be” without things to attend to which are causing me frustration. I feel at the mercy of others who don’t understand the frustration and anguish I’m experiencing. . I have no plans, no imagination. I am not sharp – everything is present, not “what if or suppose…” I really don’t imagine anything! Being in the present is a job in itself. This is very difficult to explain to anyone without a brain injury. Things just don’t happen automatically. I am “Flat”. My mind has big spaces. Simple things don’t register. I tried to do a crossword puzzle. The clue was “watch your ….”. I could think of nothing and my head felt like a pinball machine, like someone was speaking earnestly to me in a foreign language and I was hoping to understand or recognize even one word and grab it!

Sometimes people talk and I have no idea what they said even though I hear them talking, and I see their mouths moving. I have to constantly FOCUS, otherwise it is like hearing a conversation through a wall of the next room. It reminds me of being a child in bed and hearing the grown ups talking the next room.” (end of journal entry)

About 2 years ago, I suffered one of my many small TIA’s, always fearing a deadly blood clot might occur. As I sat in my lazy boy chair, unable to move, I felt like a balloon that had the air let out. I was deflating, getting smaller and smaller. . My head spun, and I actually believed that I might die in the chair. I was very calm. After maybe 15 seconds, I was ok, and sat quietly in disbelief that I was alive. I kept really still so as not to break the magic. I was fearful and relieved. Fearful that I was getting worse, but the next day I realized that a lot of the brain fog was GONE! My doctor has absolutely no interest when I told him about it.


Many survivors have been ridiculed and have suffered distress at not being believed about brain fog in all its variations. It is encouraging to see the “Out of the Mist” article. Hopefully, the professionals will talk more about Brain Fog, and that will lead to further discussion and understanding for “invisible brain injury”.

There is a wealth of first- hand information out there from survivors-- for anyone who wants to listen.

Posted on Tuesday, March 16, 2010 at 18:07 by Registered CommenterDr Karen in , | Comments2 Comments

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Reader Comments (2)

Wow Carole. First off, welcome and please accept my appreciation of your detailed description of not only what Brain Fog feels like but how it impacted you each and every day.

The description you have given us about how the brain fog presented such a barrier for you to think and act is really powerful. Were you able to tell people about how this felt or what you needed? If you did, and others were not able to make consistent adjustments to assist you, what did you do?

My second question, comes out of Karen's introduction. Do you have thoughts on what you did to help you in changing your attitude? You speak of the frustration and anguish. How did you move from those feelings to feeling happy?

Thanks again Carole. I am looking forward to reading more of your postings and really appreciate you sharing your experiences so that I can reflect and learn.

March 17, 2010 | Registered CommenterPaula Cassin

First off Paula, thank you so much for reading my article and taking time to comment and ask some questions.

It was very difficult to get anyone to even listen to, nevermind understand what was going in on inside---the hundreds of things that just didn't work automatically. Because I could still kind of walk and speak, I was dismissed without a definite diagnosis of "brain injury".It would take several years to even get an MRI that would show brain lesions.

I did finally get help from the Brain Injury Association of Niagara and Brain Injury Re-Entry, St. Catharines who assigned a caseworker to me. Between the 2 associations, they saved me, got me disability that had been denied for several years,arranged for therapists to see me in my home, attended doctors appointments with me, accompanied me to shopping malls,helped me fill out forms. They understood my problems. Some friends and family members did not,and thought perhaps I was faking. It was very disheartening.

What helped me to change my attitude was accomplished with BIAN's and BICR's help---I was able to ACCEPT that I was not going to be as I was before..
THAT ACCEPTANCE DID NOT MEAN THAT I WAS GIVING UP!

What also helped me was yoga and meditation which was offered free to me by generous spiritual yoga teachers in Niagara Falls. I started doing Buddhist practice. I decided to "give up all hope of a better past", forgive everyone everything, and make the best life for myself with the cards I had been dealt.

That only meant a lot of hard work lay ahead for me,that I would have to invent new ways to do things and I would be persistent --luckily with continued help from BIAN and BICR for about 9 years.

More later....again - thanks for your interest.And please feel free to ask me anything. I will try to answer clearly and concisely.

March 17, 2010 | Unregistered CommenterCarole

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