"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Unpublished articles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

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Sylvie - My Autobiography

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September

2021

2021 Day to Day Reality

January 2022

My Book

July 2022

December 2022

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December 2023








Updates List

Half a Century

May 2023 to December 2023

I seem to be falling into a six monthly routine with my autobiographical updates, and as usual I will start off with my health.


Since May I have only had two spells in hospital, though they were close together, in late September and in early October. Both were due to kidney infections. The first one set in just before my 50th birthday.


On the morning before my birthday, I was at icandy, where I go to get my nails done, and the lady who does them commented that I was not my usual self, being much more subdued. In the evening Tony was concerned enough to call my brother, who came down. After a conflab they agreed it would be best for my brother to take me up to A&E, as he has numerous times before.


We arrived at A&E shortly after 8pm and the receptionist prioritised me for triage, this happened promptly and we were quickly allocated to a space in A&E, in their blue zone. There I was seen by the doctors, bloods were taken, my stats were taken and my condition monitored. It was decided quite early on that it would likely be a Urology, kidney infection issue but they needed blood results to confirm a few things. They needed to redraw some of the bloods as the initial ones coagulated. Things took time, as they do, and it wasn’t until after 5am that transport arrived to take me to my second home, ward F1 at the Hallamshire hospital. No sleep for my brother that night.


My big celebration for my 50th birthday, was to get admitted to hospital. Trust me to do things differently. A few days later my brother asked me if I’d done it deliberately to get double wishes, one lot for my birthday and another for a speedy recovery.

 



                                                                                                          







I was in a very good mood that day and replied yes.


The reality was however that on my actual birthday I was just in recovery mode, and I didn’t really start interacting with the ward until my birthday had passed.


I recovered ok, but as I was on IV antibiotics I couldn’t be discharged immediately. I was eventually allowed home a fortnight later on the 29th September.


Unfortunately a week later one of the District Nurses made a mess of changing the Nephrostomy bag and dressing. After she redressed it the tubing was kinked. This meant that the urine was unable to drain from my kidney into the Nephrostomy bag, not good! Tony spotted the error, and corrected it, unfortunately what neither he or my brother realised was that the correction wasn’t a permanent fix, so the tube kept re-kinking. What my brother should have done, in hindsight, was get the District Nurses to come out the same day to redress the site, unfortunately this didn’t get done until the Monday. On Monday 9th October, a different District Nurse made a professional job of changing the dressing, which allowed the Nephrostomy to drain properly. Unfortunately in the meantime an infection had, had time to brew within the kidney.


We knew from the dark colour of the urine that an infection was possible, but Cheeryn and my brother were hopeful that with the Nephrostomy draining properly, it would not set in. My brother left at 5.30pm thinking he would come back down around 9.30pm. Once back at mine he expected to stay and have to keep an eye on my health overnight. The hope was that I would be fine, but he would be there if this was not the case.


What actually happened was that Cheeryn had to ring my brother at 6.30pm as I had taken a sudden turn for the worse. My brother said he would come down, but if needed Cheeryn should call for an ambulance. Before they’d made a definitive decision they got cut off, this is when Cheeryn made the decision to call 999. An ambulance arrived quickly, at the same time my brother did. Cheeryn definitely made the right call as I was not able to communicate at all, due to my body entering it’s shutdown to cope mode, meaning hospital was a must. The way I presented made the ambulance crew think I may have had a stroke, so they rang the Stroke Unit and I was whisked there rather than to A&E.


This had the advantage of quick treatment, essential if it was a stroke. My brother and Cheeryn thought it was unlikely, but weren’t going to double guess the paramedic. So lights flashing I zoomed up to the hospital and was promptly scanned for a stroke before being taken to ward L2. I was on the ward within about an hour. Their diagnosis being that it was likely that there hadn’t been a stroke. This all happened really quickly, no slow bother with A&E. I arrived on the ward during shift change, so it wasn’t until a little later that the doctor talked to my brother. This discussion helped confirm the kidney / urology infection diagnosis.


Once I had settled they were going to move me to another ward, either L1 or F1 I think, but then a swab came back positive for MRSA, so I was moved to a single room within L2 instead. Later in the week my brother came to visit and he said entering my single room was like coming into a disco. This was because my boombox was playing my music out loud, and me and the 2 nurses, who were doing my drugs, weren’t being quiet either.

This stay in hospital was shorter, even though I had been rushed in this time, and I was discharged the following week on the 18th October.


Since then I’ve been at home and going to routine hospital appointments. My health when I am at home is similar to what is has always been, but the way I cope has changed in the last year.


Up to about a year ago, my coping mechanisms were mainly within my own head, but something changed after the October 2022 infection and hospitalisation. It can be that infections can cause mental changes, not all of which rectify themselves; I suspect this is the case for me, allied with the impact of progressing MS.


Now I often chat to ‘little people’ who are around me, on my bed often. People who the carers and my brother can’t see. The impact of these little people isn’t always good as I can imagine that they are sometimes getting up to no good, which upsets me.


Another thing I do is insist the time is completely different from what it actually is, for example that it is the middle of the night during daylight hours. This can mean I often ask that my TV is turned off during the day, despite my having insisted my brother programmes it every day. I guess I’m developing more irritating habits than I had before, which isn’t a good thing for getting on well with my brother or my carers. Oh, by the way, the TV I’m not watching is a new TV I was given for my birthday!


My brother would say I have a looser grip on, or is it interest in, reality now than a year ago, unless I’ve had a really great sleep, when I can be my old self again for a short time. He would also say that sometimes I still say some things for a reaction, because I can, not because I’m in the ‘new’ looser grip on reality, ‘new’ habits, mode. That I still push buttons, because I want to. The difficulty for my brother and the carers is judging which it is and acting accordingly. These different modes, don’t help me either, as my brother and carers may think I’m deliberately acting out when I’m not. Why do I act these ways then? It’s because these behaviours are a way for me to stay in control. I keep doing them for control, even if the reactions that come back aren’t positive, because they are reactions I’ve made happen, which means by making them happen I’m, in theory at least, still in control in some small way, which I psychologically need to be.


I know my brother finds it particularly irritating when I don’t answer questions about what I want to do, so he has to decide. Naturally I’ll then decide I want to do what was offered, once the option is no longer there and I’ll go on about it. This is where my brother and carers suspect I have more control over things than my actions would often suggest. Again my need for control, my way, isn’t necessarily a positive for me.


A positive that has happened however is that after a funding review, my care is to continue to be fully health care funded, meaning I don’t have to make any financial contributions myself. This meeting took place back in July, though par for the course we haven’t yet had confirmation of my revised personal health budget a full 4 months later. Last time it took around 5 months to sort and for the extra money to appear. The difference in money this time will be small, albeit we expect an increase.


I think that’s most of the health related nonsense, so I will move onto the back garden renovation I reported was in progress back in May. I am please to say that it went well as you can see from the photographs below. It’s not so much a garden now, but it suits me and my needs.

Carol, Steve’s sister, and me in the back garden

in June.

Since then my brother has painted the fences and shed which makes the garden seem brighter.

Since my brother painted the fences, the wet weather has meant that the older fence panels have deteriorated and one recently collapsed in the wind, so 3 new panels and a couple of new posts will be going in, in December. New panels which my brother will have to paint, which is sort of funny as he has just done the lot.


You can see my room on the right of the last picture. What the photograph doesn’t show is the successful re-roof of it which was completed in June. I now have a nice solid roof over my head, rather than one that was deteriorating. I won’t bore you with photographs of it.


That isn’t it for work at my house as it has got to the stage, after 25 years, where jobs need doing. Jobs for 2024, include

  1. Getting some of the fascia at the front of the house replaced as it is starting to rot.
  2. Re-roofing the car port as it is in a poor state now.
  3. Sorting pointing work on the outside of my room.
  4. Getting the dinosaur and friends painted.


Number 4 is an important job, because the animals are complaining that everything else is looking neater and they should too. They’re not wrong, especially at the back where they are, because as well as the work already mentioned I’ve had the house windows repainted. They will now look ok for 3 or 4 years. It is likely the windows will need replacing rather than repainting next time, but thankfully it is a job that can be put off for now.

The Moaning Monsters.

2024 is lining up to be an expensive year, because after 2 years of letting Steve’s bachelor house lie empty, after it had been wrecked by tenants who were growing cannabis there, we’ve decided to renovate it rather than sell it as is. This is no small job, because as well as the internal damage they did, we have to reinstate the electrics and the connection to the grid! This is because they by-passed the electrics which eventually caused a fire in electrical box outside the property. The blaze did not just effect us, it also took the property below ours off the grid too as their box was also burnt out.


This happened one evening back in October 2021. My brother was called over there by neighbours, and had to stand around whilst the fire brigade, police and Northern Power Grid did their things into the early hours of the morning. In the end the police didn’t bring in crime scene investigations as the number of plants involved was ‘small’. They took away all the plants and a lot of the growing tech, and destroyed it. We haven’t heard anything since so it just another unsolved crime as far as we know.


When I say its no small job, I mean it, we even have to put in a new front door and frame. It’s currently screwed shut as it was damaged when the fire brigade broke in to check there were no people or further fires within the property. Jobs to be done, once clearance is completed include.


1. New front door.

2. New Kitchen

3. New Carpets.

4. Getting electrical supply reconnected

5. Checking internal electrics and removing, replacing as needed.

6. Stripping everything back and re-plastering, painting.

7. New Fire Escape, an age thing, not their damage.

8. Replace the ceiling / floor between main room & the loft, as their hydroponics soaked it.

9. Sorting any other damp patches in house from source.

10. Sort problems yet to be discovered.


Here are a few pictures of it’s current state just to give you an idea what we’re dealing with.



Those above are just in the main part of the property and don’t include the loft are where they had their factory, see below.

If that wasn’t a big enough job we have Steve’s Classic American cars to sell next year. We’ve currently got 7 of the 8 up and running and hopefully it will be all of them by the end of the year, ready to list for sale early next year.


As regards other matters, the audio book version is on hold, as Emerald has 4 A levels, piano lessons and life to handle at the moment, more than enough with out prioritising the poems in My Crazy Brain.

My book! —––––––>

Of Poems and Joke










Well I’ve got to keep plugging it.


Available as a paperback & e-book online & at / through most bookstores.



Talking of Emerald, she is currently filling in the deed poll form to formally change her name to Emerald Light from Marcus Wright. She is making this change she is trans gender and Emerald Light reflects her better than her birth name.


We’re just happy she’s confident enough to tell everyone who she really is and isn’t hiding herself away at all.


Music is a big part of who Emerald is, and her composition, Onionade, was performed in Gloucester Cathedral by the ORA Singers as part of their young composers showcase during the 3 Choirs Festival. There is a YouTube stream of the whole concert. Emerald’s piece starts at 43:40


I am proud of Emerald for getting her composition in the concert, and for composing something different to the others. That someone else won, matters not to me. It was unfortunate however that the car broke down on the way home, a brake pipe going on the way out of Gloucester, but a least she and my brother were dry whilst waiting on the M5 for recovery. This wouldn’t have been the case if it had happened around Sheffield, as that day was one of many we’ve had recently when it not only rained cats and dogs, but pigs, sheep, horses and cows too.


Emerald has just finished composing her first symphony, Flaming Symphony, follow the link to hear the composition on YouTube.


To finish off this update, I have a question for you.


Can you believe Emerald is now 18?


I can and can’t believe my little baby is all grown up!


Here is a photo of Emerald and me taken on her 18th Birthday.

Sylvie Wright

5th December 2023

Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=A35: Half a Century

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

December 2022

May 2023

December 2023








Updates List