"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Unpublished articles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

December 2022

May 2023

December 2023








Updates List

Little Miss Obstreperous

December 2022 to May 2023.

The good news is that I am currently at home and feeling good and healthy.


My health has been very up and down since the last update, my having been admitted to hospital three times since the beginning of December, each time due to infections developing in my Kidney. I have been in hospital 5 times in the last year, which is a little bit yikes.


The first of these latest admissions was on December 27th 2022, so I managed to have a good, though quieter Christmas at home with M (Marcus), my brother and my carers. It was quieter for many reasons; my being even less interested in Christmas than before, M growing up, my brother not instigating as much this last year and of course due to there being no interaction with Grandma, something which always added smiles to Christmas.


The December 27th admission meant that I spent New Year in hospital something I avoided in 2018, when I was discharged between Christmas and New Year.


What happened this time was that my health dropped overnight, which meant Cheeryn was quite concerned for me as soon as she came in the morning, so she quickly got on the blower to my brother who then came down to my house. By 8.30am they’d made the decision to ring 999. The 999 operator agreed that I needed to be seen; but suggested that due to ambulance workloads and priorities, it would be quicker if my brother took me up to A&E himself rather than wait for an ambulance to arrive. So my brother and Cheeryn took me up to A&E in my WAV.


Once we were at A&E we had a bit of a wait, not a really long one, before I was triaged into A&E. Once in A&E, I went into resus, due to my unstable condition. There the doctors kept a close eye on my condition. Shortly after 12.30pm it was noted that my health was starting to go down hill quickly, something primarily indicated by a sudden drop in my blood pressure to very low levels. This caused great concern and I had 4 or 5 doctors gathered round, consulting each other and discussing little old me.


I am not saying that it caused great concern to get your attention, they were significantly more concerned on this occasion than they usually are, so much so that my brother and Cheeryn were dispatched to the family waiting room. The doctors had the conversation with my brother, that I might not pull through; that they would have to make appropriate clinical decisions about how far to take the treatment. I was so ill, my brother felt that it was appropriate to allow a Do Not Resuscitate (DNAPCR) to be put in place for the length of that hospital admission, one to be rescinded, when I returned home. It was not an easy choice and maybe not the right one, but even without a DNACPR in place I’m not sure if their treatment choices would have been much different, it being mainly up to my body to win the battle.


Apologies to all, I didn’t mean to worry everyone so much, but I am glad that my brother tried to let as many people a possible know how ill I was.


Once it was known I was over the worst of it, Cheeryn went home, whilst my brother stayed in A&E with me, he was allowed back into Resus sometime around 3pm.


Once my health had been stabilised, by their dropping a lot of fluids into my system to get my blood pressure up, they got Urology more involved as they realised that due to my history it was likely to be a Kidney infection, related to a likely blocked Urethra that was the source of the infection I was battling. This turned out to be the case.


The Urology registrar did more than one Nephrostomy wash out which cleared it a bit, but he wanted a new Nephrostomy bag on so things would run more smoothly, but there wasn’t one anywhere on the Northern General Hospital site.







The problem was solved, by my brother going back to my place and getting one from our supplies.






Even with the pee being able to flow easily down the Nephrostomy, I was still too poorly to be transported over to the Urolugy ward, so I ended up in the Acute Medical Unit (AMU) for a couple of nights, before the transfer was made.


I actually made a relatively quick recovery on this occasion and was discharged home on the 5th January 2023, with no DNACPR in place.


My time at home was not to last more than a few weeks as another Kidney Stone dropped and blocked the Urethra towards the end of January. On the 25th January 2023, Cheeryn noticed I wasn’t doing as well in the morning, but decided monitoring was the way to go. By 11am she was getting concerned, so a per usual rang my brother, who came down to my house. He agreed with Cheeryn’s concerns and this time took the decision that ringing the non-emergency 111 number was the way to go.


The outcome was that they decided to send out an Ambulance to me, which duly arrived between 12pm and 1pm. The paramedics assessment was that I should go up to A&E, where sometime after 1pm my brother joined me.


It was quite busy so things didn’t move very quickly, which was ok at first, but it meant an assessment by a doctor took longer to happen than desirable. Also my bloods weren’t done, because the lady gave up very quickly as my veins were small. Eventually I was assessed by a doctor and allocated a room in the general Blue section of A&E. It was there where my blood pressure suddenly dropped, not helped by the fact that my first drip by cannula had failed as the needle had moved, meaning the fluid went into the muscle instead of the vein. As the Resus part of A&E was quiet the doctors scooted me round there, where the senior consultant put a cannula in my thigh, using an ultrasound machine to get it placed. Once they got fluids into me my blood pressure recovered. I was transferred over to the Urology ward late that evening, after 11pm, enabling my brother to go home and get his dinner at midnight.


This was again a shorter stay in hospital as I was discharged on the 31st January 2023. Compared to previous times I hadn’t been as ill on this particular occasion.


I was again back home, and actually made quite good progress according to my brother. By which he means I was slowly becoming more the person I was before the October 2022 infection, someone with more interest in interacting with people in the world outside my head, rather than someone just trying to dictate things on my terms only.


This progress was interrupted in the week before Easter, when my condition started to lapse from the Tuesday evening. For a couple of days, through Wednesday and Thursday, I wasn’t fully myself according to my carers, my speech was a bit off, as was my interest in things, but it wasn’t at an A&E level of concern. Especially as my pee was still running.


On the Thursday, I had a routine bloods monitoring appointment at the local doctors in the afternoon. Therefore my brother went up in the morning to see if a Doctor could see me after that appointment, as I would already be up at the surgery. This was duly arranged, so I first had blood taken and was then assessed by a GP, as a result of which I was prescribed some prophylactic antibiotics, which had been successful before, which I started that afternoon. It turns out that the antibiotic chosen wasn’t going to work against the infection I was brewing, but the doctors weren’t to know that at the time.


On the Friday, Good Friday, I was slightly worse than the previous two days, not as talkative etc. Tony was thinking of contacting my brother when he popped into my house anyway. After quite a bit of discussion, as I was borderline, they decided that advice was needed. It turned out, as it was Good Friday, that getting advice was easier said than done, as the Urology Assessment Unit (UAU) was closed, and the Urology Ward wasn’t answering the phone. Therefore around 12.30pm my brother decided to take me up to A&E, we got there around 1pm, as it’s only a few miles from where I live.


I was triaged around an hour later, the nurse apologising for the delay, and she got me straight into A&E. I was parked, in my chair, near the nurses station in A&E as a temporary measure as they had to move someone out of the one bay in A&E that had a hoist, to be able to hoist me into a bed. To my mind only one hoist in A&E is pretty poor.


Instead of taking 5 to 10 minutes to get me transferred it took nearly an hour. The sister in charge of A&E eventually took things into her own hands and went into Resus, where the hoist is, and bossed people about, after which I was quickly transferred. I was then moved to the Yellow section of A&E. There I was fully assessed, put on a drip and hooked up to monitors etc.


All went well for a while, until my blood pressure dropped quite quickly. My brother who having seen this on the last few admissions, knew it wasn’t a good sign, quickly pointed this out to them. My blood pressure drop gave them a scare, so I was moved back round to Resus, into the hoisting bay coincidently, as a precaution. There my brother continued to monitor my blood pressure meaning timely extra fluids were given each time. I was stable enough to go over to the Urology Ward just after 9pm that night.


Each extra admission, leads to my brother learning something new about the symptoms I present in A&E, which helps the doctors treat me more quickly. The main two things he looks out for are.


1. My heart rate racing; this means I have excess pee in me, backing up. This is usually due to a Kidney Stone blocking the Urethra and the Nephrostomy being blocked. The usual, solution is to get the Nephrostomy cleared asap.


2. My blood pressure dropping quickly; this means I haven’t taken onboard enough fluids, which means I need to be on intravenous (IV) fluids asap.


After which it’s a matter of the microbiologists finding out which bacteria is causing the infection and selecting the appropriate antibiotic(s) to combat the said infection.


It was because they could only use an antibiotic that can negatively interact with another drug I take, that I was kept in hospital for longer on this occasion, so they could monitor me for the just in case moment should it come. In the end I was in for 16 days, eventually being discharged on Sunday 23rd April.


It was at this time that my brother found out that there is a DNAPR in place for me, which I had supposedly agreed to. I may well have, I don’t think so, but I may have, but even if I did they should have told my brother when I was discharged on the 31st January not three months later, as it had been put in place on the 30th January.








I have consistently told my brother since the beginning of January 2023 that I don’t want a DNAPR in place, especially when I am at home, and this one was put in place for the rest of my life!


I’m not sure how it came to be, I’m sure the doctors would have talked to me about it, but how I came to agree, I’m less sure, maybe I felt pressured or maybe I wasn’t really listening and just agreed so the doctor would go away.


My brother has organised a phone call with the local doctors, to try and get it removed from the system, on the basis I don’t want it, and querying it’s appropriateness whilst I am at home. We understand appropriate medical decision have to be made in hospital, and we are happy for doctors to do that, but not less qualified medical practitioners, who I’d more likely see at home. Hopefully it will be removed, the local doctors have removed a DNACPR once before.


It does however bring up an interesting question, about whether I am still mentally competent, to make my own decisions.


It’s a question to which my brother says the answer is yes when I am interested and engaged on a subject, and no if I see the discussion at that moment as pointless and irrelevant to me.


This is how different medical professionals and psychological experts, can come to different conclusions about my competency to make decisions for myself.


In the case the DNACPR completed on the 30th January 2023, the doctor declared me mentally competent to agree that one should be put in place for the rest of my life. Whist an assessment carried out on the 8th February 2023, to assess my capability to be competent enough to vary Grandma’s will, decided the opposite, that I was not.


We know the not competent outcome occurred because the tests they use, have sections that are very simplistic within them. These simplistic sections lead me to disengage as I see them demeaning, stupid and pointless, even though I know they are part of an overall assessment I need to complete and pass. I no longer have a long enough focus to put up with such trivial parts.This lead to me disengaging and being declared non-competent, to my disadvantage.


My brother says that I’m in many ways too clever to be an easy person to deal with in a disabled state. He says it would be easier if I was more stupid, not that he’s saying he wants that. At least I hope, not.


I know what he means though, I can often, by choice, be

Obstreperousness is part of who I am, it’s part of what drives me and keeps me going, without it no me, and we can’t have that!


It does cause me to do quite a lot of things for the reaction they cause, which isn’t always good for those around me, be they family, friends or carers.


It also means I can come out with statements that others wouldn’t, in part to see the reaction they get and in part because I think why shouldn’t I say them.


I said in the hospital this last time, that I was going to die, but then forgot to.








The reason I’m still alive, is because I forgot to die.



The problem is if I do things for reaction, too much, people don’t tend to believe me if I do get something bizzare stuck in my head as a truth in my world.


For example recently I have been saying I’ve not got a Nephrostomy in, or someone else’s Nephrostomy in. That is taken as me going for a reaction, most of the time, but occasionally I can wind myself up about it and then get in a panic about it, so the line between my wanting to get a reaction and keeping a grip on reality can sometimes blur and then others, the carers especially, have to deal with that.


Thank you to my carers, for all you do.


I mentioned wills further up the page, well we’ve finally closed probate in the USA which was linked to Steve’s will and estate; we’ve completed most things over the other side of the pond now, just tax returns to be signed off, though that may take a while yet.

I still miss Steve and also Grandma. Love you both.







I’m spending quite a bit on the house at the moment as it has got to an age where jobs need doing.


So far most of the work has been done during my stays in hospital. During my last stay the long halogen lights in the house, were replaced with new circular LED lights as we wouldn’t have been able to buy new halogen bulbs from September.







Also during the last stay in hospital I had a new boiler put in, a great change as the old one was a noisy old thing, not good, especially as the boiler is located in my bedroom.


During the late January stay in hospital I had some gardeners come in and clear all the ivy and growth from the back garden. During my last stay they came back and started working on paving the back garden, so I can access it better. The plan is to half pave, half pebble the back garden, the pebbles being on the dinosaur / animals side of the garden.


They gardeners have made a good start and are due back in the next week to continue the job.





None of this cheap, and there’s a bit more to spend as the flat roof on the extension needs replacing as does the one on the car port, and the window frames could do with a touch up.


Talking of the car port, we still have Steve’s yanks, they will eventually get sorted, probably sold, but it’s not the highest priority at present, it may well not happen until next year.


Other things are also moving slowly, like the audio book version of my book, we’ve all taken our eye off the ball on that, but my brother and M are aware it still needs to be done.


Talking of M, Marcus now goes by the name Emerald Light, rather than Marcus Wright, they do this by their choice and that’s ok with me because it’s right for them.


One of the reasons for informing you of this now is because this is the name they are known by at school and because they’ve got into the ORA Singers Young Composers Final 10, this year, as Emerald Light. They will have a composition featured in a concert in July. I think it will be available on t’internet, I will send people that information nearer the time. I’m really proud of them for doing so well in their music and composition.




Sylvie Wright

3rd May 2023

Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=A34: Obstreperous

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

And now I don’t want to, because life is still existing.

I just love some of statements my brain come up with, and the reactions they cause.

September

2021

2021 Day to Day Reality

January 2022

My Book

July 2022

December 2022

May 2023

December 2023








Updates List