Wednesday, 7 March 2018

MY BRAIN IS MISSING

Bonjour, 

This blog is about the commonly used phrase BRAIN FOG that sums up feelings of confusion, forgetfulness, lack of focus and mental clarity. 

It reminds me of one of the worst episodes of Star Trek called 'Spock's Brain' where Spock has his brain stolen by an alien female.  To me brain fog feels like my brain is missing. My mind feels slow and unresponsive, like I'm wading through treacle, like I'm stumbling in the dark, like I'm lost in a fog and can't find my way out. It feels like the worst hangover without the benefits of having a drink! My memory is hardly better than a goldfish. Did someone put cotton wool in my head? Where's my brain gone?!!! 

So despite my cognitive difficulties I'm going to explore brain fog, how do we describe it, what are the main problems, how to prove brain fog, comparing then and now, what causes brain fog and what if anything helps brain fog?    




Brain fog is a common symptom of M.E. although not unique to M.E. 

"One of the most troublesome symptoms in people with ME/CFS is “brain fog,” which manifests as impaired working memory and concentration accompanied by difficulty processing complex information".

How do we describe Brain fog? There are many cognitive problems  that are part of M.E. and may include the following 


  • Difficulty with simple calculations (e.g., balancing checkbook)
  • Word-finding difficulty
  • Saying the wrong word
  • Difficulty expressing ideas in words
  • Difficulty moving your mouth to speak
  • Slowed speech
  • Stuttering; stammering
  • Impaired ability to concentrate
  • Easily distracted during a task
  • Difficulty paying attention
  • Difficulty following a conversation when background noise is present
  • Losing your train of thought in the middle of a sentence
  • Difficulty putting tasks or things in proper sequence
  • Losing track in the middle of a task (remembering what to do next)
  • Difficulty with short-term memory
  • Difficulty with long-term memory
  • Forgetting how to do routine things
  • Difficulty understanding what you read
  • Switching left and right
  • Transposition (reversal) of numbers, words and/or letters when you speak
  • Transposition (reversal) of numbers, words and/or letters when you write
  • Difficulty remembering names of objects
  • Difficulty remembering names of people
  • Difficulty recognizing faces
  • Poor judgment
  • Difficulty making decision
  • Difficulty following simple written instructions
  • Difficulty following complicated written instructions
  • Difficulty following simple oral (spoken) instructions
  • Difficulty following complicated oral (spoken) instructions
  • Difficulty integrating information (putting ideas together to form a complete picture or concept)
  • Difficulty following directions while driving
  • Becoming lost in familiar locations when driving
  • Feeling too disoriented to drive
I'm sure you can add to this list! 

The problem for me and others with M.E. is how to prove that we really suffer from Brain fog. 

I know that my cognitive and mental ability is severely impaired since becoming ill with M.E. in 2003. If I compare my ability now to that of my former self and life there is a big difference.  

Here are some examples where I am able to notice the difference -  
  • reading books was once a pleasure and I could read through a book in a matter of days whereas now it can take me months to read a book and there are days when I can't read at all  
  • reading, analysing and understanding articles or letters was something that I excelled at but now it can be extremely hard or impossible  
  • writing or typing a letter or something like this blog could be done easily and quickly but now it will take days or even weeks
  • I used to love interaction with other people and have a good conversation but now that's very limited or not possible at all. My days are spent mostly alone. 
  • In my early years I was very academic, I was in the top stream at school, passed ten 'O' levels and 2 'A' levels. I was trained as a teacher and have a Bachelor of Education degree. I had excellent communication and organisational skills, I was a teacher, later I became a supervisor of a team of people in Finance, I was capable of making decisions, I helped others giving advice on official documents and procedures, I was an educator and so much more. Now all the skills required for my former self feel lost and gone forever. I find it very hard just to organise my own life on a daily basis and often get confused and forget the simplest of things.    
  • I used to travel and visit many places before becoming ill but now I rarely leave my home as I easily become lost and disorientated and I suffer from sensory overload which can lead to panic and anxiety attacks
  • other signs of brain fog in my life now include forgetting what I've just done; forgetting names of people and objects; going into a room and then having no idea what I'm doing there; forgetting where I've stored something; forgetting how to operate something; writing or typing words in the wrong order or unable to spell the simplest of words; forgetting what I'm talking about; unable to concentrate; unable to follow and understand something I'm watching or listening to and so on!!          

  So what causes Brain fog? 

In 2015 scientists at Columbia University's Mailman School of Public Health identified a unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis/chronic fatigues syndrome (ME/CFS) that provides insights into the basics for cognitive dysfunction - frequently described by patients as "brain fog" 

“We now know that the same changes to the immune system that we recently reported in the blood of people with ME/CFS with long-standing disease are also present in the central nervous system,” says Dr. Hornig, professor of Epidemiology and director of translational research at the Center for Infection and Immunity at the Mailman School. “These immune differences may contribute to symptoms in both the peripheral parts of the body and the brain, from muscle weakness to brain fog.”


A recent blog cites a few studies and suggests that the causes of Brain Fog may be as follows
  • sleep that isn't restful or restorative
  • abnormal blood flow to some areas of the brain
  • abnormal connectivity patterns between different regions of the brain
  • abnormal function of certain brain chemicals (neurotransmitters)
  • premature aging of the brain
  • mental distraction due to pain
  • overexertion in M.E./CFS as a consequence of post-exertional malaise 
The next question is what helps Brain fog? 

Here are some suggestions
  • for some brain fog improves with effective treatment for pain and sleep problems
  • some supplements may help with brain fog  
  • dietary changes may also help like fish (omega 3), canola or walnut oil (omega 3), eggs (choline), fruit and vegetables, a gluten free diet 



Brain Fog

My head feels light
Doesn't seem right 
Can`t think at all
Hard to recall
Lost words I seek
When want to speak
Then say wrong words
That sound absurd
Confuse a name
Brain fog to blame
Often forget
Then get upset
It`s hard to spell
Or write so well
Make notes to aid
For actions made
Weird sensation
Much frustration
Feels so scary
Makes me wary
Memory lost
But at what cost?
I feel so blank
M.E. to thank! 




Of course in the episode of Star Trek Spock's brain is found and restored. I don't know if that will ever happen to me. I've learnt to adjust and accept my limitations but it can be frustrating and scary.  

This blog has taken me the best part of a week. I hope it helps others. 

I would love to hear about your experiences. What does brain fog feel like to you? How has it caused you problems and difficulties? And what if anything has helped you to overcome it. 

A bientot 
from the French Femme 
xxx  

6 comments:

  1. Great blog.

    28 years at this and I have found that some medications exacerbated this fog. I was also a lot worse in the early years before antivirals gave me some improvement.

    What I discovered is as I saw improvement I was able to rehab my brain using various computer games and crosswords. At first I could barely keep track of what the clue was while I looked for where it was in the puzzle. Doing crosswords helped improve my concentration and word finding. It was a long slow process... but worth the effort over time. Unfortunately, mental work can lead to post exertional neuroimmune exhaustion as does physical activity. So moderation in all things and keeping a sense of humor have helped me cope.

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  2. Thank you Colleen for your comment. That's interesting to hear that antivirals have helped you. Of course it's a balance between keeping our brains active but not overdoing it and leading to post exertional neuroimmune exhaustion. I agree that a sense of humour helps.

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  3. Thank you. I feel relief that I'm not alone in having these debilitating and embarrassing issues. I majored in literature (with distinctions) at the age of 19, and 18 months later, could hardly read a paragraph. I haven't read a novel in decades. Because I can't explain that to people, or discuss the latest reads, or follow through on people's reading suggestions, I avoid talking to people who read books! (I've been housebound for most of the past 40 years, and so it's not often that I encounter someone who is a reader... 😉 Now, I've learned, through eastern belief systems, that the thinking brain can get in the way of a connection to the greater presence of life (what people call God?), I have shed my sense of shame and guilt, and practise meditation instead. The brain fog makes it quite "trippy". ;-)

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    1. Debbie these symptoms are common amongst people with M.E. and you are definitely not alone. However they are not so easily understood or explained. I too find mediation helps.

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  4. Great post! So much excellent information. Brain fog can be quite funny at times, making us do silly things, but it is also extremely debilitating and frustrating - like when you can't make yourself understood, ask for help, feel lost and confused even in a familiar place, or can't even understand your own language!

    Glad I found your blog. I'd love to have you join our ME bloggers group to share your content, details on my blog if you're interested.

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    Replies
    1. Thank you for your kind comment Char. I like to provide information in my blogs. I will take a look at your bloggers group.

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