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.

Bl**dy furious

Having been notified that one of the two medical reports have been recieved by occ health, i again decided to chase up for the outstanding report from my pain clinic consultant.

I was horrified to be told by the consultant secretary that my employers had contacted them to say that they didnt need it after all.

How can that be?

The reason i have been unable to work is due to a combination of MS and my lower back condition.

I was/am really quite angry about this, ok i am bl**dy furious ..as I want ALL my medical history, conditions to be taken into consideration.And feel that the the whole picture is vital to understand the difficulties i experience and how they affect my ability to work and live.

The angry part of me is yelling

" hey , i cant just ignore one of my conditions i have to deal with this on a day to day basis ... i cant just ignore one of my condition that is why i am having to give up work... so you shouldnt ignore one either!"

It was my difficulties with my back condition as a result of an injury at work , i may add- that the company have never taken any responibility for.
That prevented me from working full time and neccessitated a reduction to 3 days a week, and the subsequent inability to maintain 3-4 hrs , a days a week is due to a combination of both Ms and back associated disability.

It turns out that the pain clinic specialist is notoriously slow at providing reports and after waiting eight weeks and despite my chasing it has not come through. And occ health dont want to wait for it.
I am reading into this that the neurologist report must be enough on its own for occ health to make a recommendation? But will have to wait and see what they have to say tomorrow.
However , would really like the other med report from the pain clinic specialist. I dont want the pension trust to have any reason to throw it out and want it all to be taken into consideration.

Just imagine how i would feel if it was to been rejected and i knew that all the medical information hadnt been taken into consideration! This decision impacts on the rest of my life , as do BOTH my conditions.

As i have been under the pain clinic for 12 years or so for my spinal injury, occ health is aware of a lot of the limitations is poses on me . so maybe they feel they have all the information they need regarding my back condition?

But even so , its a major step for me , giving up work and i think i need that report as a part of "my process", even if occ health dont think they need it.

I need to feel that my employer who i have struggled into work for 15yrs truely understands just what i have been dealing with.
I guess i could still insist on having that report written and pay £200 myself for it.

Thing is i havent got that kind of cash and i think that the multinational company i work for could at least honour their request for the two medical reports.. £200 a drop in the ocean for them!

I so angry, not an emotion i do very often.

So whats next,? I have an appointment to see the occ health Doctor tomorrow at 11.30 am.
I will be raising my concerns about noth medical reports not being taken into consideration.
I have my notes and hopefully my partner can come in with me as im so exhausted and full of emotion right now , im worried about not communicating everything , let alone take in what they say to me.

positive vibes please.

Im listening.. alarm too deafening to ignore!

ok ok , Im listening!
I now fully recognise and acknowledge that I have foolishly compromised my quality of life for years trying to attend work, for the fear of loosing my job- to the extent that I have relinquished ALL leisure activities on my non -working days just to make sure I recovered enough and was fit for work,. I just CANT do that any longer.

After six years of continous struggle with severe back pain and full body spasms after a injury to my back .After numerous surgical interventions and many unsuccessful phases of phased return to work I was forced to reduce my working contact to three days a week, over three years ago .
I foolishly struggled to maintain this reduced 3 day a week contract for three long years , spending my non-working time recovering form the effects of working and severely curtailing leaisure activities in order to be “ok” for work.

After further failed surgical interventions and unsuccessful phases of phased return to work and a diagnosis of MS , I was not even managing 3hrs 3 days a week. It was at a point that I had to STOP trying to struggle into work three months ago and have been off sick since then.

I have foolishly compromised my quality of life for years trying to attend work, for the fear of loosing my job- to the extent that I have relinquished ALL leisure activities on my non -working days just to make sure I recovered enough and was fit for work,. I just CANT do that any longer.

have meant I have been unable to carry out many normal day-to-day activities.
I am no longer able to enjoy many leisure activities and I have had to make changes to my career path and reduce my working hours. Work involving standing has proved impossible resulting in change in role involving desk duties. Sitting for too long also triggers my back spasms.

Over the years I have put my commitment to work as the overriding priority.
Since 2003 have struggled to maintain a reduced working commitment of 23 hrs by severely limiting leisure activities for the fear of being unable to attend work. Latterly I spent my non-working days purely recovering in order to be well enough.
As a result my physical, emotional and spiritual standard of living has been seriously affected and diminished…from not being able to learn to drive, do my gardening, walk my dog to carrying out any activities that involve sitting or standing for too long.
Day-to –day activities that I took for granted when I was fit and healthy eg, ironing, washing up and cooking a meal are now an enormous struggle and have been neglected on order to preserve my physical status in order to work.

A more recent decline in my health due to the further deterioration of my back condition and the combination MS symptoms has meant that gradual return to my working 23hrs a week has not been possible.
And at the last point of the return to work programme a vastly reduced 3-4 hours daily over 3 working days is not attainable*
The day-to-day variability of my physical capabilities has meant frequent absences from work.
When I could get to into work I struggle through my working hrs* knowing that I would most probably be laid up at the end of the working day retiring to bed taking medications, unable to get myself a meal and take basic care of myself.
With a dual diagnosis and combined symptoms I am experiencing due to MS and back condition there is no further scope for compromising my quality of life and self care. I have realise that I have reached a point where I need to prioritise managing my health conditions and maintenance of my health above all else.

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

Operation cancelled

Today I was expecting to go for more surgery on my back ( factet joint denervation... again!) at 1.00pm today ( the last lot didnt work )
I just got a phone call from my consultants secretary to say that it has been cancelled because they cannot get the nursing staff together! bare in mind this is a private hospital, ( a perk of selling your soul to a multinational company).... my consultants sec is outraged that the hospital cancelled on the day.have another hospital appointment for this sunday.
I havent eaten since 7.00pm late night, , which i will pay for MS fatigue wise ,slept hardly at all and am tense as hell muscle wise which exacerbates my back pain.
Ive now got to explain to work why im not going in work today instead of going to hospital, which is probably what they will expect of me,but im in no fit state.I am on restricted hrs atm ( 3-4hrs ,3 days per week).
Got to make the phone call now which im dreading . im not sure how i feel atm.. but i do know i could really do without all the liasing im having to do with works occ health dept atm, just want to concentrate on of getting out of pain.
what im finding the hardest is to just concentrate on my health, there are so many work issues at the moment .

Feeling decidedly dodgy atm. Ms symptoms are doing my head in, there isn’t one day the same, the ms fatigue is really hard to deal with , and its rare to enjoy a long walk with willow recently as im either in pain or exhausted. I would have never believed that even going up the stairs or popping to the shops could wipe me out enough to need to sleep. At night I wake with numb arms and cramp in my legs and this is in addition to my back condition.

Im suffering cognitive problems too, which may or maynot be to do with the MS, as stress and depression guess cause wont be helping. But it’s scary when your brain won’t do what it used to do. I find it much harder to cope with than the physical stuff.
On the horizon in the next couple of months is the grand-housing conundrum, which I wont go into as its far too complicated, but it may well mean trying to coordinate the selling of three properties to buy two. How stressful it that chain going to be!

Finally after two years of threatened redundancy, we have been told that 400 jobs are going and 20 will remain. (Needless to say there isn’t a chance that I will be one of those 20) That’s fine, im trying to see it as an opportunity to do something different although my health isn’t going to allow me to work in any “proper job”.
As for redundancy, as i may have said before ( sorry)I had to go to reduced hrs about 3 yrs ago because of ill health and despite having worked for this company for 14 yrs in total (i.e. 11 yrs full time), they want to calculate my redundancy on my current salary. Which seems really unfair, it isn’t as though I left to have a child and decided to reduce my hrs because I could afford to, but because I was forced to do so due to ill health. So I’m going to have to try and negotiate a prorata basis for the redundancy, taking into account the 11yrs full service. My boss has asked me on several occasions if I could return to full time but am not physically able to, had I been able to, if I had done so for a few months when we were initially told there would be redundancies on the horizon, I would have redundancy calculated on 14yrs full time.
In fact I know people who did just that. But they could play that shrewd move because they don’t have the health problems I have. It sucks!
I don’t really have the energy to negotiate it, but I can’t leave it. Also Theres a possibility for ill health retirement, no guarantee, supposedly the only time it’s guaranteed is if you are terminally ill. but occ health said they will put a report together if I want them to as I have two chronic conditions
Thing is getting an idea of what that package might look like in comparison to the redundancy. what a mess.. its so hard to discretly get the information in order to work out which is the best option to go for . I don’t want to suddenly find I have been steam-rolled down the the ill health road, if its not the right thing for me to do. I don’t know about pensions and stuff, it’s a logistical nightmare! And im too exhausted to deal with it all. I cant believe im posting this, im not one for airing my problems so publicly and I usually play things down and seem to be coping, but im having a really hard time and I really don’t know how im going to deal with it all.
I guess this is what i started this blog for, a journal for me to express my emotions , and to offer others something. Im hoping i can be a bit more positive soon and offer more than my emotional ramblings.
For now i should just be conentrating on my imminent op, but my head is a whirling and im not supposed to get stressed as i can bring on an ms episode and exacerbate my existing ones!