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.

Russian Roulette

I addressed in writing my concerns regarding the inaccuracies in the medical report from my Neurologist . And requested to see it again before it was forwarded to occupational health.

However, I have since received a phone call form occupational health to say that they have received the Neurologist report!

After many phone calls to the Neurologists secretary I established that some of the inaccuracies in the report have been corrected, but the final statement and the misuse of the word “near” has not been addressed.

I don't really understand why simply striking the out the word “near” entirely would have addressed my concerns.
I understand that maybe he didn't feel comfortable trying to predict the future until my retirement age (a good 25yrs ahead), but I would have been more comfortable if he had stated that ms is a permanent condition (he cant speak for my other conditions - that will fall to the other consultant who will be writing a report also) and that currently I am unable to work and that it is likely that my ms condition will at best stay the same or become worse in the future.

I imagine that the pension trust would understand that Ms in a permanent, chronic, progressive, often debilitating neurological central nervous system (CNS) disorder?

It seems crazy that the pension trust will make such an important decision will be made on the basis of medical consultants reports written after the best part of three 10 minute consultations, of which imp not convinced they really listen anyhow!
I did leave the consultants with notes of all that I am struggling with and how it affects me on a day-to –day basis, which I thought would help him write the report, but from the amendments I had to ask him to make its clear he didn't use them.

I have decided to write my own account of how my symptoms affect me on a day to day basis and put that also in the context of how it affects my ability to work- and sent that to occur health, and request that this is used to supplement the consultants reports.

As im really frustrated that the medical consultants don't take the whole picture into account.
Surprisingly in the 12+ years I have had a spinal problem due to injury and two years of MS diagnosis and been under various medical consultants- I have NEVER been asked in any detail how these conditions impact my day-to day life?

I’m finding this all incredibly very stressful worrying, and i am having to deal with severe pain and fatigue to boot through out all of this.

My situation is made all the more complicated by the fact that I am due to be made redundant in the next year anyhow.
And I believe by the fact that I am by going for ill health retirement, I will have put myself in a position of negating any responsibility of the company that I work for to give me redundancy. As the criteria I have to meet for my employer to even submit my case for ill health retirement, means that I am incapable of work, so the worse case scenario would be that I would be refused ill health retirement and then the employer terminates my employment on a capability procedure. So no redundancy pay and no ill health pension.

It feels a bit like Russian roulette going for ill health retirement, but a redundancy pay would be small and mean I would spend the rest of my years until retirement reporting to the social security regularly to review my capability for work which would be far to stressful for me. And we all know that ms and stress don't mix.
Where as ill health pension would give me a small regular payment for life that would enable me to reduce stress levels and try to get some quality of life back and manage my conditions- and finally clear some space to look after myself like I should have done years back.

I dont know how my health will pan out in the future, I have been told that my back condition is progressive and there is nothing else the medical profession can do but try and manage the severe pain and that the MS symptoms I am experiencing currently not an exacerbation but permanent residue disability from previous episodes and that this is my new baseline of disability. So. I have to make the most of what my health does allow me to do now.
Life is too short and it cannot be just about saving myself to struggle for a couple of hrs a week and to spend the rest of the time trying to recover from the physical effects of that .

Its taken me years to get to this point, as I have a very strong work ethic , i look back now and realise too strong . I didn’t really realise that i had let things get quite so out of balance- not helped by denial of full the extent of which my health conditions were impacting on my life.

Words fail me.....help from the more eloquent needed!

There are days when i just cant find the words to express myself.

Whether thats due to MS i just dont know.

Its as though i have some kind of word blindness at times, or maybe better explained as knowing that i have the word filed away somewhere in my brain, but it takes a huge amout of energy to rummage through the cabinet of my brain to find it.

If i do decide to invest the energy required to seek the required word out then the time it takes to do so leaves the person i am talking to glazed over or unable to resist the temptation to jump in.
There are times when i just dont want to try that hard, so i use the first word that comes into my head, often with humourous results.


With my partner its not an issue as she understands the problem i have but we do have what would appear to be the most Bizarre conversations to the outsider!
" im going to put the dinner back in the .......(now what cabinet is that word stored in....damm its taking too long and too much energy.. come on any word will do.....) washing machine! lol!!!
As frustrating as it is , it does make us laugh often.


However its not always words for inanimate objects that escape me.

I too have difficulties with constructing concise sentences. Made all the more difficult if i am emotionally engaged with what i want to say;hence my tendancy to ramble and babble at times.

But harder than that is formulating a written sentence that has emotional significance.


None of these difficulties are constant, yet another thing that varies on a day to day basis.

Some days i am able to communicate with what seems by comparison razor sharp sentences which are relative, accurate and concise.And the sentence comes to me in lightening speed and reminds me of how my brain synapses used to fire.


But today i have to write a very important letter.which is why i am writing this blog requesting some help from those who have a greater eloquent capacity than i do today ,which is probably you!!


so,some background to the letter i must write:


Due to my health conditions i have been told by both my medical consultants that they support my ill health retirement.


I have receieved a report from my Neurologist as a part of the process of persuing ill health retirement.I reviewed it and there are some inaccuracies which i have addressed in writing and these have been ammended, and i have also raised my concern with the final sentence. However, the neurologists closing statement is still causing me concern that i feel i must address. And it is formulating a written response to this that i am having great difficulty with and for which I ask for your help.


The criteria that i must meet for ill health retirement is...


"unable to carry out their normal occupation or any other occupation which the Trustees could reasonably expect the employee to undertake, whether with the Company or not; and that the condition is permanent – i.e. the condition will prevent, on the balance of probability, a resumption of normal occupation in any period prior to normal retirement age"


my neurologists closing statement


" I would suspect that the physical difficulties caused by***************** make employment in the near future in any capacity very difficult and i would support her early retirement"


ok so, the bit that makes me edgy and that i feel i want to address is the word NEAR.
The use of "near" seems misleading to me.

My current symptoms mean i am incapable of working ,these symptoms are not likely to improve.As for the future both my health conditions are only likely to at best stay as they are currently or get worse. ( i ran this by my GP today and she agreed that his was the case)
I have requested that the consutant remove the word "near" as i thought it was misleading, but he has chosen not to.


As you can imagine the implicaions of ill health retirement are emotionally challenging and i am worried that the pension trust will read the statement and interpret the use of "near", to mean that i am not capable now, or in the near future but that i may be in the period of time between near future and my normal retirement age( which is a long way off!)


How does this closing statement read to you?


Do you think i am worrying unnecessarily?


should i address this again, and if so what should i say?

I appologise

This whole ill health retirement thing sure is physically and emotionally draining.
Its been a couple of months now since i decided to stop struggling to build up on my return to work programme, having ground to a stand still and not even making 3 hrs, three days a week..no way id get to already reduce contract of three full days!!!

In the last month, i was starting to get a glipse of how my health could be managed without trying to sturggle to work. A brief glimpse of how i could have some degree of quality of life, and i was even finding my way with a routine of regular rest periods through out the day , eating properly and managing my time limiting my activities and posture to 15 minute blocks,to enable some of those things that makes life worth living.
This brief reprieve from constant health appointments, meetings etc, has made any wavering with doubts as to whether i should go this route diminish hugely.
I know this is the way to go, ive seen just how much better i can be given the chance to be able to "manage" my health conditions.

But ,now im in the throws of more medical reviews, report writing and worry.
Its been the worse time of my life, so many ups and downs, fits and starts of the ill health retirement process. I realy hope im comming to the last leg of the journey now.
I have been trying to keep this blog upto date, in the hope that it may help others who are going or will go though the similar thing- im aware its not always very cheery reading though. For that i appologise. But its a real account of my experience, and its hard to be objective.
When this ill health retirement process has reached its conclusion- i hope to be able to relect a bit more objectively and offer some help to others who may be having to navigate their way along a similar path.

Its been a strange day.. is it really only 10 past 9.- feel like 12.00pm
totally disorientated with time, guess thats because ive been up and back to bed three times today. think the anaesthetic / antiinflamm dr pumped into me around the areas he was rummaging in my back with the needle , is wearing off, its much worse today .
just been looking through redundancy calculations ( i know i should be resting , but i feel i need to do some more for my peice of mind to help move things on a bit )

To clarify on previous posts ,as I work for a large multinational company( yes it does rub on my ethics) , redundancy would be more than the Statutory package.
just done some rough redundancy calculations doesnt make things much clearer in the way of which outcome ,ill health retirement or redundancy would be better for me.
lots of people have said they think ill heath retirement would be better package, but need to find out what that would look like.
On the redundancy side the difference between calculating the whole of my 14 yrs service on my current parttime salary and prorata (10 yrs full + 4yrs reduced hrs) is £14,402 . quite a difference (big difference to me, its not much to such a large company though) cant really let that slip by without challenging .. got to pass those figures to the union now i guess there is a consultation process happening at the moment , and i know others in different circumstances are raising this. even if it gets thrown out , i think my circumstances are exceptional as i was forced to reduce my hrs due to ill health.
still no joy finding out what ill health retirement pension would look like.

Still pausing at the fork in the road..gathering information