The Waiting Game

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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

Cognitive Assessment

Received and answerphone message form occ health with an appointment date for the cognitive assessment and was told that they would get back to me once they have recieved the report.

I find this very unsettling, it doesnt feel right to me that my workplace will get the information on my cognitive impairment before i do!

Im really not comfortable with such intimate information being relayed to me in this way.
I have decided i am going to request that i see the report and have a chance to recieve feedback directly from the neuropsychologist.

All other medical information Ihave had to give consent for it to be made available to occ health, as far as im concerned this is no different.
Afterall, if i was having any other medical tests, i would expect to find out the results first.
Yes the company are paying for this assessment, but feel this should be handled more sensitively.
My partner isnt available to come with me on the original date i was given , so i have re-arranged it for the 27th. Feel Im going to need some support.

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.

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.

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.

" But you dont look sick"- The spoon Theory

"But You Don't Look Sick"....Taken from PatientsLikeMe.com


My best friend and I were in the diner talking.
As usual, it was very late and we were eating French Fries with gravy.
Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time.
We never got serious about anything in particular and spend most of our time laughing.
As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick.
I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS.
She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert.
She carried me out when I couldn't walk another step, what else was there to know?
I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS.
Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words.
How do I answer a question I never was able to answer for myself?
How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity?
I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand?
If I can't explain this to my best friend, how could I explain my world to anyone else?
I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables.
I looked her in the eyes and said, " Here you go, you have MS."
She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons.
The cold metal spoons clanked together as I shoved them into her hands.
I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.
The healthy have the luxury of choice, a gift most people take for granted.
Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point.
I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew.
If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become.
I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons.
But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet.
I've wanted more spoons for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon.
When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon.
I practically jumped down her throat. I said, "no, you don't just get up.
You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!"
I quickly took away a spoon and she realized she hasn't even gotten dressed yet.
Showering cost her another spoon, just washing her hair and shaving her legs.
Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning.
Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order.
You cannot simply throw clothes on when you have MS...its just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, they are gone.
Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons.
I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.
So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long.
She was forced to make choices and to think about things differently.
Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry.
I summarized that she had to eat dinner but she only had two spoons left.
If she cooked, she wouldn't have enough energy to clean the pots.
If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy.
I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit.
She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?"
I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it.
I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything.
I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
I wanted her to feel the frustration.
I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one.
I need to think about the weather and my own body before I can attack any one thing.
When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.
It is in that lifestyle, the difference between having a chronic illness and being healthy.
It is the beautiful ability to not think and just do. I miss that freedom.
I miss never having to count my spoons.
After we were emotional and talked about this for a while longer, I sensed she was sad.
Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands.
But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.
I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry.
I see this as a blessing. I have been forced to think about everything I do.
Do you know how many spoons people waste every day?
I don't have room to waste them, and I choose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people.
In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do.
Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness.
Hopefully, they don't take so much for granted or their life in general.
I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke.
I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.

Taken from PatientsLikeMe.com

A True friend's Truth

I now find myself trying to review my situation and decide the path i need to take, whilst weighing up impending redundancy and the possibility of ill health retirement .

So i need reflect on how I have been struggling for the last 12+ years with my health conditions and how they have affected me . Its time for a wake up call! why the alarm hasnt gone off way before now is a shocking mystery!

Whilst wading my way through the Disability living allowance form, trying to remember all the thousand of adjstments i have made over the years to try and cope with day to day activities and how my disabilities affect all areas of my life- I struggled .

I stuggled- not only to remember what i have intergrated into my life as a way of coping, but also what i have had to give up totally in the way of leisure activitiesand the impact on my quality of life.

Thousand of both huge and tiny adjustments. But also with the emotions that are raised whilst filling in this monstrous beaurocratic form that makes war and peace look like a beano comic.

I have tried several times over the years to fill in this form, each time not completing it. It was just too hard for me to reflect on the effects of my health had on my life.

May be had i managed to fill it in the realisation of the impact would have been fully realised by me and i would have had my wakeup call far earlier, and who knows maybe i would have found that my strong work ethic would have been touched into reality and i would have taken a different path by now.

But there is no point in reflecting on what ifs.. im here now .

I will return and write a more positive and encouraging guide to tackling the DLA monster, when I have managed it- I promise!

As a part of my process i decided to take a difficult step for me, to ask a very dear friend who has known me before and throughout my stuggles with ill health to help me reflect.

To give me her truth of how she has seen what i have been through.

As a way of helping me face up to things and to put it all into perspective, push me through denial i guess. And empower me to make to take the diection that would be best for me.

"Friends are kisses blown to us by angels"

This is what she wrote :

I have grown to know and love you since we were 17/18.

We seem to have been bonded together by a mutually deep emotional, intellectual, spiritual, philosophical understanding of life (as well as Annie Lennox of course before either of us really truly understood what sexuality was even!)

From our shared experiences and time spent over twenty years, particularly the weekly hours together after your therapy sessions after your back first went at work, I feel hopeful to give reflection to you which may help support you on this leg of your life journey. Of course… let’s talk if anything is not understood or just needs clarity.

You have always sought the depths of the human situation and given particular attention to its detail. I have always tried to reflect my truth (albeit from my own biases and love for you as a friend) and offer a fair and real mirror in which you can trust and share your self / feelings in order for us to try to excavate any issues or worries which have challenged any of your predispositions.

The main predisposition I speak of, as I see it, has generally been of you carrying a damaged self worth and an equivalent fear for sharing safely your true feelings in a hard edged masculine world.

This damaged self worth is a big part of why I love and respect you. I believe it has particularly equipped you with an earnest strength and drive to work, play and relate to the world around you with nothing but the highest of integrity. A challenge for you has been to work out how to do that at your own pace in a world that spins much faster than you with nowhere near the attention to detail or care to even stop and see it.

I believe your essential need to thoroughly research and understand something, before you offer an intelligent appraisal of fact, offer your opinion or make a decision, has been driven by your integrity and need / search for safety. It is in a way your science and consequently why you are good at your science and hence your chosen occupation!

As far as your career/back is concerned… I have watched you struggle to work out how to maintain your earnest, committed, conscientious approach to your employers (beyond the stretch or care of most people) with a confusing, debilitating, intermittent but relentless back pain, the origins of which have been rudely denied you and the solution to which seems to have flummoxed most medical practitioners.

This constant tightrope walking has seriously affected and diminished your physical standard of living (from not being able to do your gardening or walk your dog or learn to drive or sit for too long or stand up straight or move let alone the need to at times pee in a potty) and subsequently your emotional responses to such restrictions (shock, upset, confusion, acceptance and accommodation of fact let alone the fact that you have never truly been able to switch your mind off from it – it has been a constant for 15 or so years and it looks possible to be a constant for the rest of your life. The added MS diagnosis is I would imagine most unlikely to help the situation).

Despite juggling the stark reality of the physical and emotional compromise to your life with a multitude of brain fogging drugs, pain killers and physicians, you have somehow managed to keep your job, maintain your integrity to it and your employers and I’ve not doubt pulled off an excellent standard of work that you yourself have been satisfied with!
At every turn it seems to me that you have tried your utmost to stay financially independent though your back has seriously jeopardized this wish.

You have offered your work place realistic suggestions and respectful professional conduct in order to maintain your job, your self esteem and their needs of you as an employee as well as the human right to have a roof over your head (reduced hours, practical measures and changes for H&S in the work place, clear communication of your needs following all their stipulations and regulations when in the first instance of your back going they did not follow them themselves! – procedure was neglected)
You pioneered a new role when your original position for which you were trained became too untenable – with the height of the laboratory surfaces and the pain you were suffering, with the need to constantly try to move in order not to aggravate the pain or come to the point that you need to leave work early.

Though I understand also that it’s always been tricky to know what would be good for your back and what wouldn’t – it’s been so unpleasantly unpredictable. After a certain amount of time you generally have worked out what’s manageable in order to offer you at least a certain quality of life that you can’t compromise further on (I would wager that most people would have drawn their line way before you’ve been able to state yours) Your confidence in your deductions has always been undermined by a fear of something. It seems to me that you have always put your commitment to your work as the priority over the consequence to your back. You would go to work, struggle through knowing that you would probably be laid up the next day – but that’s not so bad coz it’s a day where you don’t have to be in at work! Your assumed position has always seemed to be a compromise to your free time.

You have stretched yourself so far to try to accommodate the unfortunate situation that the turn of phrase ‘break one’s back’ certainly and eerily springs to mind.

At some point on this whole journey you have reached the need to offer the earnest, committed and conscientious approach you have shown to your work - to your self, your back and your health. The ultimate challenge I’m guessing now might be to find trust and strength in your own feelings on the matter and assert what’s best for you when all those around you are pushing their own agenda whilst talking from an unemotional standpoint. A stand point which they take for granted because they can run upstairs, they can make love when they like and in whatever position they like, they can play sport, they can act without a constant compromise of movement.

As I always have, I urge you to muster the energy you can to get what you need here, what your body needs, to ask for what in your heart feels like a fair outcome to your years of pain and mental anguish. You are entitled to ask for what is best and fair for the management of your continued back issues and I believe you have researched the issue thoroughly by now to know what would be that ‘best’ outcome. I’m not suggesting you in any way ‘give up’ anything. In fact I think you may be pleasantly surprised that ‘letting go’ of your current idea of what work is will only lead to big, better and beautiful doors opening up for you. You have held the stress of the struggle for years. I can imagine your body giving a huge sigh of relief in the knowledge that it may be given the time to do what it needs rather than holding itself together in order to fulfill what everyone else demands of it.

You have secured a roof over your head.
You have a gorgeous loving caring partner and stable relationship.
You have an amazingly creative and spiritual streak just waiting around the corner to be given the time, energy and focus it rightfully deserves.I send you my love and strength for the best outcome you see, feel and deduce ‘fit’ having done your thorough research, lived with the experience of a continual unnerving back pain for so long and borne all the intricacy of personal attention to detail in mind. I trust your judgement. You are worth it. I urge and support you to be unafraid in asking / telling others what you need.

For such precious friendship I am truely blessed.

The alarm is now deafening.. Namaste and thankyou x

"A friend knows the song in my heart and sings it to me when my memory fails"