The Waiting Game

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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.

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?

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"

frustation....

looks like im going to have to explore the possibility of ill health retirement.( combination of my two conditions)

My occ health hasnt thrown it out, and is happy to put together a report and i will need to contact other medical experts for their statements on my health.

Sadly my gp, whom i had an excellent relationship with, who knew me well and my health issues is no longer a practicing GP ( This has actually shaken as much as anything, she has been supportive for many years and always repected my approach and participation in my own healthcare).

Going to book a double appt with my new doctor to get her up to speed and also chat about the way i like to work with a GP. my old GP was a one off , so im not expecting this one to meet her standards . so now im left with a doctor who .. has no sense of me or the adjustments i have made over the last 8 yrs with work etc just the records to go on .And a consultant (Neuro) who has seen me once to give me the MS diagnosis, but who doesnt know any of my symptoms.

The nature of the MS beast ( symptoms comming and going) and the inaccessability of seeing a consultant , means that he cant possibly be up to speed .
so im wondering what exactly is the role of a ms nurse? And if it is worth seeing her on a regular basis to keep her informed with my health ? I wonder if there a way of her to relay the information to the neuro consultant, so if he is called upon for a report he will actually know a bit about me and what im dealing with?

sorry for the downer post , im feeling overwhelmed with it all and kind of stranded with health professionals that will have so much influence in and ill health retirement decisions , yet they dont fuly realise the impact of what i am been dealing with and its hard for me to find the opportunity that information accross.

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!

Sunflowers in November- the beginning

It was a beautiful bright but cold November morning in 2006

I paced the pavement as i chain smoked my third cigarette of the morning.
Seagulls overhead stalked the fishing boat and and i watched as everyone started their day whilst i waited for 9.00 am to arrive.

So, i had Multiple Sclerosis.. i had woken every morning since i was told by the neurologist two weeks before that my brain had white plaques which was indicative of MS, with those words in my head.
I have MS, I have MS, I have MS....... like some strange kind of incantation.

It was a normal day in October , October 6th 2006 ...a Friday when i was diagnosed with Multiple sclerosis ,after about three weeks of experiencing a weird face.
It started as an itching sensation on the right side, i thought i had an allergic reaction to an insect bite or something.
For days I soaked my bandanna in water and rested it against my face for relief and took piriton. We were on holiday in North Yorkshire.
Gradually the itching turned to a surface numbness and my eye was kind of blurry.. like i had sleep of a stringy kind on the surface of my eye that wouldnt move when i rubbed it.

We walked on the moors, and every evening at 6.00pm we watched as startlings came into roost in the trees behind our cottage..hundreds of black specks dancing in the sky.

The blurring of my eye turned to itchyness of the actual eyeball, that made me want to pop it out and dig around behind it. And my scalp on the right side was itchy -numb too.
On our return a visit to the doctor was in order.

In another two weeks the roof of my mouth was numb and i couldnt taste food properly, and weirdly everything smelt of vegetable soup!

Doc did some blood tests, and said it was probably a virus and the symptoms would settle in time. a virus made sense as i had blocked sinuses for a couple of months.
I recognised the tests she had written on the pathology form, due to my biochemistry training. So i knew what it was that she was wanting to rule out, so i asked her are you considering MS ?
At this point i knew very little about the disease, but of course i had tentatively googled. But hadnt taken much in and wasnt overly worried about it.. i really didnt think it would be MS. My self awareness is such that i know i could have a tendancy to worry after having researched things .. but i truely wasnt overly concerned. Denial phase even before diagnosis maybe?
All came back negative, so she said she wanted to do a MRI scan which would mean a wait , but she wanted to refer me to a neurologist
By now my symptoms were diminishing to a certain degree but the sight in my right eyes wasnt right still, and when i got hot my face itched like mad.

It was whilst at work that my eye was such that i couldnt see the computor screen properly , so I went to occupational health. The nurse examined me and rang a collegue for advice.

They were concerned that i may have a tumour, so before i knew it i was being rushed to A&E by taxi for a CT scan on my brain. The CT scan was "unremarkable"...relief no tumours.

When i saw the Neurologist, he examined me. Tested relexes and found nothing " remarkable".
He referred to the letter from my Gp, in which she she said i had a concern regarding MS.
He insisted that it was very unlikely , i assume because of the negative blood test and neuro exam, but reluctantly agreed to refer me for a brain Mri scan. And asked if i wanted a follow -up appointment or wait for him to contact me to say it was negative.

Of course i wanted a follow-up appointment!
If the symptoms were still there then i wanted to know what it was.

off i trundled.. COOL ,he obviously didnt think it was MS.


By the time i had my brain MRI scan, all i was left with symptoms wise was some numbness on the roof of my mouth.
A month passed, and on day of my follow-up appointment , we went shopping .
I thought about cancelling it as i was feelling fine now, and as they hadnt contacted me saying they found something i felt i was just going throught the motions.
The follow up appointment was much like any other appointment with a consultant that
ive had -and ive seen lots over the last twelve years due to an ongoing lower back condition.

It was , what do they say? ...." unremarkable" in its difference from the other specialist consultations.
The same lack of bedside manner and compassion that i had come to expect.
Shortly after taking a seat, he took out my scans and placed them on the lamp.
"There is no easy way to say this , so i will just say it. You have plaques on you brain that are indicative of MS".

The delivery of this shocking news, or i could say the shocking delivery of this news , left us stunned.
I believe there was a little time spent scribbling bar graphs, but i came away with no understanding of what this meant for me.
Straight into action, i asked
"Is there was anything that i can do to help, diet etc?
"No.. there are lots of fandangled diets out there, but no proof that they work."
"Is there anything i shouldnt do , to look after myself?"
"No , carry on as usual, whatever happens in the next five years will tell us what type you have "

Later that day i was angry. Really angry! Not for the cruel card i had been dealt , perhaps misdirected to the consultant.. i checked myself on that one!

But because of the way that the consultant handled it all.
My partner works in a hospice and so is used to breaking bad news, was horrified by his lack of explanation and the fact that he gave no perspective on what i might mean for me at all.
I realise now that this disease is so varied there is no way of telling how its going to affect someone. It has a path of its own as far a i can tell.- But this needs to be explained.

Days later, i was even more angry!
I cannot believe that I was offered so little in the way of explanation of the disease and its nature.
What made me most angry is that MS by nature often affects young people.
And there was a specialist in MS who had no consideration of the importance of empowering an individual to do all they can to look after themselves, backed by scientific evidence or not!
As a 39 year old who has 12yrs experience of needing to take care of my body in ill health I felt that maybe i was lucky to have a particular slant on such things .

Yes , do what you are physically capable of , course you gotta live live to the full, but there was no reference to eating healthily, resting when you need to , minimising stress and generally taking care of yourself.
I certainly wasnt doing any of that when i was in my twenties!


Thankfully there is a whole lots of great information and support out there.

Stubbing my third cigarette out on the kerb, i walked into the surgery. A month had past since my diagnosis and this was the first time that i had seen my Gp since then.

She spoke to me in some depth about the nature of MS. Told me that as I had an almost complete recovery from sensory symptoms and not motor, and that i was close to 40yrs old that there was a chance that i may well never have another episode. And that I may well be in a "benign category".

I left knowing that the future was uncertain.. I heard myself and smiled ...but it is isnt it!
I knew that there were things i could do to look after myself.
There was an intensity to life that i realised Ihad let drift by me for a while.
A brightness, a euphoria.
I felt as though i had ben given permission to live.. to really live, with both eyes and heart fully open. That i had been given a gift as it were, a reminder to experience things fully, moment to moment.

As I walked away from the surgery towards the harbour, seagulls circled.
The November sun was warm on my back and to my left in an sea spray and wind exposed garden , right on the on the seas front in full bloom .. was a Sunflower
....a Sunflower in November!