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

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 the health diary updates were originally written for a different site than this one. There are some specific topics which are named rather than dated, and 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Unpublished articles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

April 2019

November 2019

March 2020

November 2020

April 2021

Home

Sylvie - My Autobiography

Inc Health Diary

Sylvie in

the Media

How to

Cope

with MS

Help

dealing

with MS

Diet,

Nutrition  

Exercise

CCSVI

Sylvie My Poems


My

Family


Useful

Links

September

2021

2021 Day to Day Reality

January 2022

My Book

July 2022



Updates List

  I paid in Dinosaurs!


January 2022 to July 2022

Firstly and most importantly I’d like to say thank you to all of you who have purchased a copy, it means a lot to me. I really appreciate it and thank you for the positive feedback, especially on the poems and their introductions. I realise the jokes and riddles can be hit and miss depending on ones tastes.


Secondly, I need to say thank you to Dee, who edited the book, and brought it up to a condition in which Bill could do the typesetting and front and back covers for me. Thank you Bill. They’ve both made me a very happy lady. You’ll see at the back of my book a list of novels Bill (Allerton) has written and self published, amazon link here. When you have time please have a look at them, as he has been very helpful to me, he even let me pay for me the work he did in dinosaurs,








to the delight of his grandchildren, I think they might like this too.















I still have further plans related to the book. I am looking to make it into an audio book so people like me who’s eye sight is too poor to be able to read it can enjoy it. The feedback on this plan is that the audio book should probably just be for the poems section of the book as the ordering and timing of the jokes and riddles part would be extremely difficult to do. This is a little disappointing for me, but Marcus, who is exploring how to record it all, has promised to record the jokes and riddles just for me, so I can listen to and continue to remember them all. Be warned I won’t ever forget any of them.







Marcus has the time to do this at the moment as he has just finished taking his GCSE exams, we’re hoping he did well in them.


I am also hoping to get an article about my book, and me, in MS-UK’s New Pathways magazine, we’ll see if this pans out long term but currently it seems promising unlike the local paper which disappointingly was a dead end.


The book has been the definite positive of the last 6 months, other things have chugged along generally, apart from one hospitalisation when another Kidney Stone dropped in June.


I told you in a stop press of the January 2022 update that a District Nurse had pulled my Nephrostomy out. This meant the Urology consultants and I had to have a rethink in strategy. The decision was made that it would be lowest risk to not to put another Nephrostomy in but to run me on low dose antibiotics to help sterilise the urine and prevent infections building. This strategy worked well until a 17mm Kidney Stone dropped and sent my body balance out of whack.


Kidney Stones dropping are an extra big problem for me because I have only 1 Kidney, which means the body can’t compensate by kicking the other Kidney into a higher gear, so all my vitals get out of balance very quickly which also aids the spread of infections, not a good combination.


Again it happened at the weekend, and on a bank holiday too boot; my brother says I deliberately choose these times, I don’t! It was on the long Jubilee weekend when the stone dropped. My pee had been getting discoloured for about a week before, which must have been due to Kidney Stone debris moving down my system; but it was only on the Bank Holiday Thursday that I was put onto preventative antibiotics by my brother and carers as it seemed to clearing up less and they were concerned about a UTI occurring. On the Saturday, Cheeryn was concerned enough about my behaviour to ring my brother. Once he arrived at the house, he agreed that it was worth ringing 111.


We rang around 10.30am, had a call back from the local GP collaborative around 11.30am, and a doctor out visiting by around 12.30pm. A good turn around really. The doctor, after consultation with the hospital microbiologist, prescribed a different antibiotic in case I was becoming resistant to the low dose one, and the preventative one. I took the new antibiotic mid afternoon. By evening 6pmish Yvonne, who was now on shift, was concerned enough to ask my brother to come back down. This was possible as grandma had already gone to bed.


Once back down my brother saw that my condition was worse, so he rang the Urology Assessment Unit, with the hope of getting me straight on there without going through A&E; unfortunately they said no and told my brother to ring the doctors back. Rather than do this he rang 999 as he judged my condition would likely to deteriorate more quickly than it would take a doctor to attend. As it was Jubilee Saturday, the demand for Ambulances was acute, and we were told we’d have to wait at least 50 minutes even as a priority. After about an hour or so they rang back, and the lady stayed on the phone as my condition was variable and I was at times, non responsive to questions. The ambulance arrived about twenty minutes later, they did all their monitoring and agreed I needed to go into hospital. Due to my history they also rang the Urology Assessment Unit, and the answer to them was yes bring her directly here, so I was able to avoid A&E and get straight to treatment. All in all the whole process went quite well.


Once in hospital I had a new Nephrostomy put in, on the Sunday. This allowed my body to try and recover and get back into balance. This took longer than it often does and I was in the hospital for over a week, coming out on Wednesday 15th . During my time in there my mind was very confused at times, mixing up different things I’d heard and knew into a new reality of memories that weren’t actually true to fact, though very real to me. That’s what an infection on top of an out of balance body chemistry will do to you.


We’re not sure what the plan is going forward, to leave the Nephrostomy in or to take it out, but given there is another Kidney Stone potentially loosening, I think I’d prefer to keep it in, on balance. This has been agreed at least until October.


Apart from this hospitalisation I’ve generally been healthy, in fact I gained weight in the first 6 months of the year to 9 Stone. I think this may have in part been due to all those Christmas Maltesers, as I was adding them to my drinking chocolate each night. My weight has stabilised since I switched to Maltesers flavoured drink chocolate, which I recommend if you haven’t tried it.


It’s good to have, good carers who know me and who know the difference between when I’m being a moaner and when I am becoming seriously ill, I consider myself lucky that way. I was recently saddened to hear that my former carer June passed away. Cancer again, that bastard.



I am still simplifying matters following Steve’s passing, I can’t believe it’s nearly 2 years ago already.


I recently sold the Florida property as I wasn’t ever going to go there again and it was in needs of repairs.


It is a place that holds many fond memories, including so many stories blogged about on this website, but it was time to let it go.


There are still lose end to tie up in the US, but it will all be sorted legally and financially by the end of 2023. Yes things take time, but we get there, or out of there in this case, in the end.


Love as always.

Feel free to e-mail me

Sylvie Wright

18th July 2022

Mail: brown.websites@gmail.com?subject=A30: Lucky

It’s been 6 months since my last general update, though I was pleased to inform everyone when  my book MY CRAZY BRAIN was published, with a splash, back in April.


Now it’s time to update you on everything that’s been happening. Where should I start, I know, by updating you about my book.

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

April 2019

November 2019

March 2020

November 2020

April 2021

September

2021

2021 Day to Day Reality

January 2022

My Book

July 2022



Updates List