Wednesday 30 April 2008

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.

Tuesday 29 April 2008

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?