"All our dreams can come true, if we have the courage to pursue them"

Home

Sylvie’s Autobiography

Inc Health Diary

Sylvie in

the Media

How to

Cope

with MS

Help

dealing

with MS

Diet,

Nutrition  

Exercise

CCSVI

Sylvie’s Poems


Useful

Links

MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote as health diary they were originally written for different sites. There are some specific topics which are named rather than dated, these have been put in approximately when I was doing them / they occurred.

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018





Updates List

Building walls with my habit of habits - December 2017 to July 2018


It’s time for a new update, although compared with some times in the past I’ve really been quite boring since the last update. Don’t worry I’ve not been boring enough to just talk about the good old English weather, but having mentioned it I must say it hasn’t been the usual ‘good old’ English weather this year at all! No its been either snowing or desert weather this year, with hardly a raindrop to be seen, alright I might be exaggerating slightly but its felt to me that when I’ve gone out its been much too cold or much too hot.

There’s only been Cold Cold Snow and Hot Hot Sunshine, Trust me I’m an MS’er

I’m going to start with the most important news, I got another new carer in February and even better it was Clare! Clare mainly works with me at the weekend and we both enjoy it when I’m able to get up to Grandma’s, especially when we can shade-bathe in the back garden.

Clare, me and Grandma, shade-bathers.

Clare and me.

I don’t know if you can see it very well on the photo on the left but Grandma let her garden grow like a meadow this year, it was a beautiful site, see below.

The other main news, is that I have been talking to a Psychologist who has given me a diagnosis, which wouldn’t reflect all that well on me if I was a fully healthy individual, but I am not. I know it might come as a shock to you but NO I have NOT been faking this illness for years, just to claim benefits! NO its very real and bloody horrible too!


The diagnosis, yet to be fully written up, is that I have difficulty taking information aboard and am very rigid in my thoughts, probably due to lesions in the brain caused by MS.


When I say difficulty, well the diagnosis say that’s an understatement. There are 3 ways of taking information in, through reading, listening and I forget the third. What it comes down to is that I can’t read due to my eye shimmer and that I am only really left with the use of listening to learn, and that I am no good at that. There is a 0-100 scale they use to measure remembering, cognition and thought. Most people are between 25-75 on it, well I don’t even make 0!


Its a weird scale as you can score less than 0 and more than 100, anyway as I said in terms of listening I score less than 0. I can hear my brother saying I could have told you that.


Interestingly it turns out that if you talk to me in a structured logical way, I can do better, yes I score higher, yes higher than 0, yes a whopping great 5!


That’s the official diagnosis!


So what were peoples reactions, to this?

  1. Good we have a diagnosis it should help us get more funding for your care. (Until they move the goalposts again.)
  2. Bad, You’ll use the diagnosis as an excuse for your habit of habits
  3. Yes, but Sylvia can remember more when she’s really interested!


There is truth in all these reactions probably but the diagnosis is correct and its something that reflects who I have now become,



A LADY WHO HAS MADE A HABIT OF HABITS



My brother says I am restricting myself by building a wall of limiting habits around myself, this is true, but I have to, otherwise anxiety takes over, building walls with my habit of habits, comforts and calms me, even if it help nobody else, I must do it, there is no other option.  


I mentioned funding above so I’ll continue the update on this topic. I’m currently going through re-budgeting and I have unofficially heard that I have managed to secure a small increase to my yearly budget, this increase will solely be from social services funding. Fingers crossed I will soon get the official notification and funding very soon and be able to say an official thank you.


This does not mean I get all the funding I need to cover the costs of my carers, I don’t, family privately tops it up, I am very lucky they can afford to do that because if not I’d have to cut back my carers hours.


How I’m still joint funded and not Health only funded I don’t know, we’ll see what the next Clinical Health Care (CHC) assessment brings. I’ve been told if its after October 1st it will be under new funding criteria, and the new criteria should reflect my needs better, but I’ll wait for the outcome before believing that. Trust CHC, no way.


What is worse is that my care needs in terms of hours are likely to go up as my habits put an increasing psychological strain on the family, but I need those habits, not just that family is becoming less able to do the care Grandma is getting older. These are both also reasons why my brother had to stop being a main carer at the beginning of the year, and why I got Clare, yey, and why I’ve got an over-squeezed budget, not-yey.


My habits are my habits and I need them.


That does not mean that all the habits are good, they’re not, even I recognise that, I’m not totally stupid, BUT I STILL NEED MY HABITS.


A case in point is my teeth, unfortunately for them I have had the habit of needing to drink something all the time, or hoard food in my mouth. Over time this habit of firstly drinking litres of tonic water a day, secondly hoarding grapes all day in my cheeks by my teeth, thirdly hoarding watermelon all day in my mouth by my teeth and lastly by  hoarding sweets in my cheeks by my teeth all evening, has rotted many of my teeth away.


Ok time to confess, I’ve either had, or am going to have nearly all my back teeth out. In the autumn I’m going to have to have a general anaesthetic so they can take a least 11 out that my habits have sent beyond repair, BUT STILL I NEED MY HABITS.


Another habit that can annoy is that I have become addicted to Alexa, I’m sure there are times when I’m saying Alexa, Alexa, Alexa, that people want to strangle me, but it’s great to have music etc at your tonsil tips. I don’t think I help myself by having the preference her playing music whilst I am watching TV, I don’t always get my way with this, but I try too, as it’s my preference, my habit. That sounds painfully close to being an excuse doesn’t it, but it isn’t, no way, not ever.


Looking back at this update, it’s quite full of things, it’s not that boring, even though I have been relatively boring. I guess one of the less boring things I did was compose The Meaning of Life aka John Shuttleworth should be Prime Minister Poem. Click the link if you haven’t read it before, you want to refresh your memory or just bamboozle your poor brain.


My book of Poems, Jokes and Riddles is coming along, being re-edited again, but hopefully it will soon be ready for professional editing and then for publishing. Not sure of the status of my life book, whether I’m going to pursue it, I’ll decide after this ones done.  


Oh and Marcus is doing fine at school.


That’s All for now folks

Sylvie Wright

1st August 2018

Feel Free to Email Me

Mail: brown.websites@gmail.com?subject=My autobiography A22 - Building Walls

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018





Updates List