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.

Please dont...

PLEASE DON'T…

Don't assume because I look well

That I feel well.

Looks can be very deceiving.

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

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

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

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

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

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

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

Its been a strange day.. is it really only 10 past 9.- feel like 12.00pm
totally disorientated with time, guess thats because ive been up and back to bed three times today. think the anaesthetic / antiinflamm dr pumped into me around the areas he was rummaging in my back with the needle , is wearing off, its much worse today .
just been looking through redundancy calculations ( i know i should be resting , but i feel i need to do some more for my peice of mind to help move things on a bit )

To clarify on previous posts ,as I work for a large multinational company( yes it does rub on my ethics) , redundancy would be more than the Statutory package.
just done some rough redundancy calculations doesnt make things much clearer in the way of which outcome ,ill health retirement or redundancy would be better for me.
lots of people have said they think ill heath retirement would be better package, but need to find out what that would look like.
On the redundancy side the difference between calculating the whole of my 14 yrs service on my current parttime salary and prorata (10 yrs full + 4yrs reduced hrs) is £14,402 . quite a difference (big difference to me, its not much to such a large company though) cant really let that slip by without challenging .. got to pass those figures to the union now i guess there is a consultation process happening at the moment , and i know others in different circumstances are raising this. even if it gets thrown out , i think my circumstances are exceptional as i was forced to reduce my hrs due to ill health.
still no joy finding out what ill health retirement pension would look like.

Still pausing at the fork in the road..gathering information

Operation cancelled

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

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

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

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

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!