BRAIN IN A BELL JAR

The last couple of days i have been completely decked , and been in trying to recover from my TWO hr occupational health meeting.

I went straight to bed in the morning when i returned and stayed there until the morning.

The day after i had to deal with acute back spasm , triggered buy having to sit far past my threshold.

Its so frustrating that aggravating postures arent always immediate and as in this instance sometimes have a accumulative and delayed effect.

As occ health will be totally unaware of the aftermath .

The meeting was emotionally and physically challenging as you might imagine.

I did try to keep moving around and not to sit for too long, but driven by the importance of getting my truth accross i reverted to my well ingrained stance of trying my best and take the consequences after.. WHEN will i learn.

My partner came in with me , that was really helpful, shes a gem!

To be honest i have no recollection of what i said, the memory of the conversation is patchy to say the least. Misted by subsequent brain fog and painkillers.

I have been left with a feeling that i was not asked thorough prompting questions, it all seemed disjointed to me and im not sure that she wrote the important things down.

One of my difficulties is to verbally communicate all the relevant information when asked a general question. For example "what is your typical day like?". Icould write it down for you as a list now, but to have to express that in words is really hard for me. Partly because of cognitive difficulties?? and also because a weird kind of shutter comes down probablty due to the panic of wanting to express myself and get all the information out. so i get overwhelmed and end up not saying most of the detail that would answer the question... and im left with a feeling of pure frustration and doubt that i didnt relay vital information.

I just cant process that kind of open question. Given prompts however , it is a completely different thing. Had i been asked talk me through the details say involved with particular day to day activities i would have felt that i was able to communicate the information. But give me a wide open space to have to tune in on like a whole day and i struggle and end up not saying much at all.

I did leave her with some notes i made around how my conditions impact on day to day activities, and my physical limitations, sitting , standing walking etc. I really hope she reads them. But again, i realise that i didnt go into minute detail and really break it down .

for example i said i am in severe pain when i bend , when in fact im in severe pain with any movement that involves a twist of my pelvis or bend at slight angles forward or backward . And i didnt relate to how that impacts on specific things like putting my socks on , standing at the sink to wash up etc. I said i couldnt wash up , but disnt spell out the dynamic reasons. There is so much detail.. more than i am able to communicate verbally, and i was concious that that kind of detail may be more than i think anyone would read if i was to write it down and it would be dismissed and not given the time , so i generalised. BAH!

One of the first things that i asked for clarification on what why the pain clinic consultants report regarding my back problem was " no longer needed". The responsei recieved when i asked another occ health person when i first heard was that she thought there was enough to go on with the neuro report, but that i should ask the occ health doctor when i saw her.

What i was told this time, was that pension trusts very rarely award ill health pension for muscular skeletal problems and that they thought it was better to concentrate on the Neurological condition that i have , that will be the MS.

So right from the beginning i was hearing that they didnt want to know how my back limitates my day to day living and how that prevents me from working. So that kind of silenced me somewhat and made it difficult for me to communicate the extent of the problems i have, because i dont actually experienced ms and my back condition separately. They both have their own disabiling and limitating effects , and interplay and compound on each other.

I reaffirmed that i would be persuing that report anyhow.

I just cant help feeling that yet again my employers are dismissing my back condition and im well aware that feeling is probably partially tied up with the residue resentment that they have never taken responsiblility for my back injury that happened at work in the first place 12 years ago. And im trying hard to hear that they are trying to make the best case for me with their knowledge that muscular skeletal conditions are really hard to get recognised by the pension trust, but i do wonder.

The occupational doctor made a quite unsatisfactory attempt at assesing my cognitive ability. She was obviously not prepared or comfortable with it . so it didnt highlight my difficulties.

I was told very close to the beginning of the meeting that she would tell me three things and ask me to recall them later into the meeting.

1. was a colour

2. was a name

3. was an address

however she spent such a long time after she had given me the three things, saying that she would have to write them down incase she forgot them, etc that i had plenty of time to try and compensate and make associations to try and remember them.

for example the colour was my least favourite so i was going to remember that, the road of the address was where a friend lived so that was easy to associate and the name i made a concious effort not to associate too hard. Needless to say i was able to recall, the colour , road but not the number and not the name.

There were some other questions that she asked like what year is it? , whats hapening in current affairs? Doh, thats just not what i have difficulties with.

I expressed how i find my cognitive difficulties the hardest to deal with emotionally.

At the end of two gruelling hrs, she said she thought she had enough information and that she would have a meeting with the top bod of occ health who would be signing off the report when it is written. And that he may ask for me to have a cognitive assessment, but she thought there probably wouldnt be the need. But if i was to need one, i had a choice of seeing a Neuropsychologist that the company buys the services in , either at my work place or at hs practice which is 10 miles away. I explained that although travelling to his practice was harder for me physically( i struggle to sit in a car) emotionally i would be better not having the cognitive assessment done at my workplace. I just cant face stepping out and seeing people i worked with when i fired with full mental capacity after having what i feel to be intrusive delvings into how i relate to the world. Iam trying to take care of myself.

So, im waiting for the appointment for cognitive assessment to come through.

And to be honest that scares the hell out of me.

I know deep down that the essence of me is not my brain. But it does influence how i relate to the outside world and other people. And it feels really intrusive to have it analysed statistically in a tiny snapshot of time . I dont believe that you can assess the difficulties that someone has with their cognitive processing by tests.Or the impact that those difficulties have on fatigue etc.

I know the tests are standardised, to the NORM, what ever that is, and that Neurophyscologists believe that they can use some fomula that somehow entrapolates to show premordid cognition. (what i was like before). But i just dont think its that simple to quantify.

I know i have difficulties, difficulties that i struggle to compensate for and that takes a huge amount of effort and leaves me wiped. Sometimes i just cannot due to MS fatigue , even try to compensate. Will they try and quantify the aftermath affects of struggling to compensate.. i doubt it. I dont think they can, its subjective and not quantifiable. But has a huge impact on a persons quality of life and that cant be measure objectively.

Disclaimer :) I feel i have justification to say this being trained in a scientific field.( wink)

Scientists feel that they have to have an answer. They dont like to say that they just dont know. If they dont know, they formulate a theory, it is accepted as fact until its proved otherwise later on down the line. When a new theory becomes the new fact.Scientists feel that they have to be able to quantify things that maybe cant be quantified..... Because society expects them to.

‘Today, only science supports the myth of progress. If people cling to the hope of progress, it isn’t so much from genuine belief as from fear of what may come if they give it up. ... Science gives us a sensation of progress that ethical and political life cannot.

Again, science alone has the power to silence heretics. ... In fact, science does not yield any fixed picture of things, but by censoring thinkers who stray too far from current orthodoxies it preserves the comforting illusion of a single established world view.’
John Gray - Straw Dogs, Granta, 2002, p.19

This might seem heretical to a contemporary scientist, but not necessarily to a philosopher, or to makers of models seeking to seize the truth.

opps , gone off on a rant there!:)

So, im anticipating an emotional impact if i finding out statistically that my cognitive abilities are impared. And frustration if the dont statistically reflect the difficulties i know i have and my personal experience of those difficulties arent taken into consideration.

I asking :why does occ health feel that they need a cognitive assessment when my neurologist has written in his report that my cognitive difficuties are one of the symptoms that for which he suports early retirement and i have expressed those difficulties?

Why does a cognitive assessment count and be deemed necessary,when a report form my back pain specialist is dismissed.

What true value will it have?

And if statistically the cognitive assessment doesnt reflect the difficulties i have, then great.

It wont matter that my body fails me, i can just send my brain in a bell jar to work instead!

And if i can separate them out, then the stuggles that my brain has wont affect the rest of my body.

Now why didnt i think of that before?

Thats frazzled some more neurons, time to crash.