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!
