The Waiting Game

image by Dale wicks
http://www.artbywicks.com/index.htm


I finally recieved a report from my pain consultant supporting ill health retirement, and this has been sent to occupational health dept.

The results of my cognitive assessment confirmed my difficulties

" significant difficulties with attention and concentration and working memory and performance on a test assessing speed of information processing confirmed defective abilities. Memory functions assessed, (verbal ,immediate and delayed) were within the average to defective range and verbal recognition memeory was also defective"
And this report has also been sent to occupational heath dept.

All has gone very quiet now, i assume occupational health are in the process of formulating a final report to be presented to the pension trustees.

Meanwhile I continue working hard finding strategies to manage by back condition and Ms symptoms on a day-to -day basis.

The impact of the the feedback from the neuropsychologist has been very challenging.

Of course i knew that i was having difficulties , but having them acknowledged brings me to a "what now ?" position.

Im sure in time , bit by bit i will find a way of compensating for the cognitive impairment.

Find different ways of doing things.. but first comes acceptance.

Acceptance is my first step, and a difficult one.

Frustration is the biggest thing. I still expect my brain to be able to work in the old ways, and find my mental processess sluggish and unreliable.

I am trying not to get too caught up in the undelying feeling that i have changed, and tthat somehow the essence of me is so different. Of course i can rationalise that my brain is just another organ and it has health problems. That i am NOT my brain. But the difficulties i have does affect the way that i react to the world and people around me. So yes if feels like as a person I have changed beyond recognition.

Outwardly, im sure that these changes arent as noticable to others as they feel to me.

I hope not anyhow!

So , yet more opportunities to find new ways of doing things.

I have had some real insights recently, and yes i can see gifts that are being presented to me by having cognitive difficulties.

Im running out of energy now , but i look forward to trying to communicate those another time

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?

Please dont...

PLEASE DON'T…

Don't assume because I look well

That I feel well.

Looks can be very deceiving.

Many days I look great but I feel terrible.
Don't ask me how I feel unless you really want to know.

You may heara lot more than you are prepared to listen to.
Don't tell me you know how I feel.
No-one knows how anyone else feels.
Two people with the same disease may feel totally different.
Don't tell me about your Aunt Gertrude
And her MS and how well she managed in spite of it.

I am not Aunt Gertrude and I'm doing my best.
Don't tell me" It could be worse."

Yes, it could be ,but I don't need to be reminded.
Don't decide what I am capable of doing.
Allow ME to decide what activities I can do.
There may be times I make the wrong

Decision, and if I do I'll know it soon enough.
Don't be upset that I cannot ease my problems.

It won't do any good for any of us to be miserable.
Don't assume that because I did a certain activity yesterday
that I can do it again today.
MS is ever changing.

Do realise that I am Angry and
frustrated with the disease -
NOT WITH YOU