Cognitive Dysfunction

A question from Linda on cognitive dysfunction :

The word ' cognitive dysfunction ' covers a wide range of distressing and disturbing communication difficulties which seem yet again to be down played , under-described in symptom lists and not taken seriously enough by the medical profession.

"Brain fog" is the classic name we use to cover over the horrible reality of living with a brain that is not working properly. In my experience the cognitive dysfunction is profound , intimately connected with and difficult to separate from the interaction with profound noise sensitivity, eye pain, blurred vision , photophobia, loss of motor control and ability to control physical function .

For me cognitive dysfunction causes massive problems with receiving, processing and comprehending information, whether visual, auditory, tactile, from an external source, as well as thinking ,imagining, visualising, remembering and comprehending information and speaking it.

Answering questions directly becomes virtually impossible. I can lose all connection between my thoughts and my ability to speak them.

I may hear but not be able to understand.

I may want to communicate in writing , yet I am completely unable to hold a pen, type a single letter, connect with my thoughts to explain them verbally.

Anything requiring information coming into my brain - then some thought process, followed by action is unlikely to happen 99% of the time.

I simply have breaks to connection and action and communication in every way. This is not conveyed in my opinion nor taken seriously by the medical profession and certainly not in the poor criteria used to supposedly identify ME, which fails us all so profoundly.

We live in effect with a form of dementia, yet it is not treated as such.

We live with damaged brains yet how many doctors do you see representing it like that and trying to treat it with the medical respect and acknowledgement it deserves?

I am able to convey some outward thoughts if they happen to be accessible in my brain at a particular connected moment. They come rarely.

I am frustrated by the lack of integrity surrounding the representation of ME and hope to put together with Greg's help ,at some point, a document to raise awareness of just how very severely affected the person with Severe ME actually is.

Greg also intends highlighting these issues in the coming update of his book," Care for Someone with Severe Myalgic Encephalomyelitis."

If you are able to and are willing to share your own experience, conveying if possible how complex and disabling brain fog actually is - and you do not mind being quoted anonymously, please tell us; it may not be possible to use all material.

We live with horrendously disturbing and distressing symptoms. We deserve much better recognition of what we go through.

Thanks !


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