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Jetmoo
last online: 05/03, 21:17
Verified User (5 years, 5 months)
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Look what i managed to write!i feel proud of myself :D i put this on my fb wall


"Something just dawned on me...

When i write online maybe it seems i communicate really well and have good cognition, likely leaving people puzzled why i make a fuss about struggling.

But what they dont see is the length of time it takes to put it together. And all the editing and sometimes deleting stuff and how sometimes spell check helps and how i can take all the time in the world to think of how i can respond to someone before i do it. Or if my mind is muddled being able to share it in a private group. Or if i post something and then feel unsure i can make it private until ive had time to think about it.

Also when i forget the content of a conversation then i can return and re- read the writing.

But if u put me face to face with someone and expect a convo to FLOW then it simply wont "work out"! I often cant process information on demand, make decisions on demand and if i am put under pressure to respond within time limits or they are adding additional info before i have processed the first lot, then dont expect my response to always be "appropriate"!

Online i can escape the noise of speech, the speed of processing speech, i can take as much time as i want to read.

But sometimes i get over whelmed and forget the words, "i need more time to think before i respond"... cos cognition is not always fast enough.

Cognition is never fast under normal circumstances such as with flowing speech face to face and has in the past resulted in there being bits missing from my vision and my world being distorted in slow motion unable to comprehend what sounds i hear are or what the speech i hear actually is. Id hear noise but not comprehend words from it, and it adding to the distress where i look like im misbehaving.

If only people knew... if they experienced it for themselves. But my carers see the struggles and it is extremely rare i ever even have a brief visit from family. Because it is complex to interact with me and i always become more unwell when people visit. I even struggle to talk with my mam as she over stimulates my brain and over whelms me. As did the district nurses..

But even sensory stimulation such as touch or movement like if one bumps the bed then my world can spin and body ache... or gently caresses my hand, i may get upset as i cant process.

Brains are funny things. Someone with dementia may not remember their own family but remember how to play the piano perfectly. They do not get to choose how their mind works. Same with myself... when i do any "activity" my brain and body processes my own movements and speech better than incoming from others. Probably cos the connections are already made in the brain at the time i "act" so when i hear my own speech, it confirms to my brain that the speech it planned out is working, so the brain doesnt understand it as "completely" new information, but only partially new. Or the body movement the brain already planned out is working as the brain expected it to. Spontaneous input doesnt get comprehended the same way.

When it comes from another, the connection is not already made in my mind. The brain has to work harder. So if i speak or am able to hug and caress someone else, it doesnt automatically mean they can do it back to me.

Weird huh. Well it is a neurological illness, amongst other things. Brain scans show M.E brains and stroke brains are very similar.

Even still, what i say is over simplified."

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Since writing this post Jetmoo may have helped people, but has not within the last four (4) days.
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time, hear, face, brain, speech
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Billy mills
Lawn
last online: 02/18, 4:01
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(2 days after post)
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You express yourself really well especially considering the circumstance. I didn't know about M.E. before - sorry you have to deal with - it sounds rough. I wish you all the best.

Help me with:

How difficult is it to build a back-end rest API with Amazon Web Services?

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Original Poster
Jetmoo
last online: 05/03, 21:17
Verified User (5 years, 5 months)
Long Term User
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(4 days after post)
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@Lawn thank you! :)

I was super happy cos its taken me months to realise this. I had forgotten and now that i remember n managed to express it, it means i can tell professionals who misunderstand me and i might actually get them to help me

Help me with:

What things are not appropriate to talk about with a guy?

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