"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Unpublished articles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




Updates List

  I’m Very Lucky!


January 2022

Penultimately following up on my day in my life post before Christmas which emphasised the real struggles I have day to day, I would like to add that I can see, I can hear, I can taste, I can smell, I can eat. My sense of touch / feeling may be reduced but given my spasms that isn’t always a bad thing and medicines help manage the worst of them. For me having these senses balances out, in a big way, the other struggles in my life. Having these senses is so important and a blessing for me. A lot of people can’t see, some people can’t speak, I’m lucky that way and I’m very privileged to have them in this wonderful world, and despite everything it is a wonderful world. As I’ve always said


Life is not measured by the number of breaths you take, but by the number of moments that take your breath away”


And thanks in a large part to Steve I’ve had many of those in my life, be it seeing shooting stars in the night sky whilst in Florida or moments on our trips to Machu Picchu, Angel Falls, Iguassu Falls, Jamaica etc


I’m still here, I’m still alive, I’m still kicking (spasm kicking definitely).


Things could be a lot worse, despite all my trials and tribulations I am still very lucky. I really appreciate what my carers do for me, despite the stress I can cause them and I appreciate the funding I get for them in the UK; and the NHS which is still keeping me alive. I appreciate what I get, as I realise I wouldn’t receive it in many countries.


I am the cat that has already had 16 lives, and I plan on having many, many, more!

Finally I want to say congratulations to Tigga (Marcus’s second mum / big sister) and Tara on the birth of their son Finley, enjoy the parenthood journey with him, it’s a fine one.


Feel free to e-mail me

Sylvie Wright

29th January 2022

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

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

It’s time for another update, I wanted this up around Christmas, but you can’t the staff to work to deadlines anymore, now when I was young, we used to have things finished way before deadlines, just because…….  Enough on that, onto the update.


In September you will remember I went to the Royal Hallamshire Hospital for my Nephrostomy to be changed and for a Stent to be put in place, but rather than having it done, I found myself being turned away as they had cancelled the procedure without them informing me.


The rearranged procedure took place on the 27th October and they successfully changed my Nephrostomy and put the Stent in the Ureter to hold it open more, and allow urine and Kidney Stones to more easily pass between the Kidney and Bladder. It was a day that dragged; more for my brother than me probably, as I was telling jokes and listening to music on his phone. It took time because they struggled to get the Cannula into a vein before the procedure and then they wanted me to stay for 2 to 3 hours after for precautionary observation; something they had not warned us about beforehand. We therefore didn’t get back home until nearly 4pm, but at least all went well.


Another problem on the day was we couldn’t find a disabled parking space at the hospital, all full. My disability vehicle at the time was 7 foot high and this meant it couldn’t access the disabled parking spaces in the multi story car park at the hospital. We ended up blue badge parking on double yellow lines at the top of the hill and having to trek down to the part of hospital where the Urology is situated, not ideal.


Did you notice, I said “My disability vehicle at the time”, this is because since then I’ve had to buy a new one, more on this later.


Since the new Nephrostomy was put in I’ve generally been healthy but I’ve been on the edge of a Urinary Tract Infection (UTI) a couple of times, fortunately on both occasions we have prevented it developing.


The first time was on Saturday 18th December. Was I trying to get back to hospital for Christmas? If so I failed!


On the Friday I was not totally with it, but the cause was difficult to pin down as I was also exhausted. As my confused state carried on into the Saturday it was decided to call the non-emergency 111 service because the local doctors were closed, as is often the case when I am ill. The outcome of the call to 111 was to our surprise, them sending an ambulance out as a priority though not at emergency pace. This seems to have been because when my brother was ringing 111 my speech was slurring, which we reported, and this seems to have upped me priority wise. In the less than an hour it took them to turn up I had a nap, which meant, due to this little bit of rest, I was no longer slurring my speech by the time they arrived.


The paramedics did their checks and discussed my condition with my brother, their conclusion, as my temperature was slightly up was that I was probably on the edge of a UTI and needed antibiotics. As none of them was qualified to prescribe them they rang the local GP collaborative, and a doctor rang them back within half an hour, during which time they admired the myriad of things Steve and I have collected. The doctor concurred with them and prescribed antibiotics, this meant within 2 hours of the call to 111, I was starting on a course of antibiotics, much quicker than we expected. The slurring speech quickened things to my advantage.


It definitely was a UTI brewing; soon after the antibiotics were started my Nephrostomy started running again which it hadn’t done for a couple of weeks before this.


We had discussed the non-running Nephrostomy with the Urology Assessment Unit and they had said not to worry as the Stent was holding open the Ureter between the Kidney and Bladder and the Urine was running fine that way. It seems they were both right and wrong, as I was peeing fine, but we suspect a tiny blockage at the end of the Nephrostomy is where the UTI brewed.


A suggestion they made at the time was that we ask my doctors to prescribe prophylactic antibiotics so we can get any potential UTIs hit quickly. My brother tried to sort this on the phone with my doctor’s, as they’re still not letting people access the surgery normally, but he failed as no appointments were available, instead he had to resort to writing to them.


This delay meant we didn’t get the prescribed antibiotics in time before a subsequent infection starting in mid January. This was in part because my drugs are now delivered by post from a pharmacy in Liverpool as we’ve given up trying to get the doctors allocating certain drugs locally and others nationally. We use the Liverpool Pharmacy as it can provide some drugs with a longer shelf life. The doctors IT systems just can’t cope with it.


Fortunately the local doctors know my condition very well and were very responsive when my brother rang them about this second UTI. Within 2 hours of my brother ringing we had antibiotics via the local pharmacy. 2 hours isn’t bad given that my brother waited for 25 minutes to get through on their phone system in the first place, not good. Once through however the receptionist went straight to chat with a doctor and he got back to my brother about half an hour later. As he knew that my brother knows my condition well, he was willing to prescribe antibiotics without a home visit, meaning just over half an hour later they were collectable from the local pharmacy and shortly after that in me.


Overall the NHS and its systems have worked well enough for me during this update, but you can see where the main issue is, accessibility.


Lack of accessibility means delay. I’ve been fortunate that most of my needs have been met on time and nothing truly urgent has so far been delayed. So far is the key, I am now overdue for the Nephrostomy change, it’s meant to happen every 12 weeks but we still haven’t heard about this after 12 weeks. We still have no date for for the Kidney Stone removal operation and we were told when we chased my 6 month overdue Spinal Injuries check-up / Botox injection appointment, that they are currently reducing face to face appointments.


What about other people’s health?


Grandma was unfortunately unwell after Christmas, with a Bronchial infection, which I think she and my brother had passed between each other until she needed antibiotics and bed rest to get better from it. Her doctors were very prompt in response to my brother’s call to them, and much easier to get through to on the phone than mine ever are. After a home visit they prescribed antibiotics, but also insisted on a Covid test, predictably negative. Negative with the caveat that it still might be Covid, good grief.


I am vulnerable to Covid, but even I wonder if we’ve got the balance right? Are as many people going to die of Cancer etc longer term as we save from Covid? My views are mild really, I can see my brother biting his tongue, being very polite, when talking to medical professionals and hard lockdown advocates.


Fortunately Grandma is on the mend now as is Marcus after he dislocated his knee during the Autumn term. We found out from this that he now has to go to Adult Accident and Emergency as he is 16.


Grandma is getting older and needs more help from my brother for all things as the Alzheimer's progresses, but she is still recognisable as herself which is a great thing.

That’s enough about health I think, lets get back to me having a new vehicle. What happened there was that the airbag sensor on my 17 year old vehicle stopped working and needed replacing, unfortunately the part had been discontinued and was very scarce. As the vehicle’s MOT was coming up, and failing it would mean the vehicle wouldn’t be allowed on the road, we couldn’t afford to wait around to get a replacement part so I really had to purchase a new vehicle. I choose to buy privately rather than get one through Motability as it means I keep the mobility part of my Personal Independence Payments allowance.


We found a place near Chesterfield that was selling a number of Wheelchair Accessible Vehicle. I went down to South Normanton and tried out a number of options, to see how they suited me and my chair. It turned out that the best one was a nearly 6 year old Citroen Berlingo. It wasn’t cheap at all but it was the right vehicle and surprisingly had done less than 7,000 miles in all that time, a definite plus.



My

New

WAV

 (At Grandma’s)

That’s purchase was made in November, which meant it was nicely out of the way before Christmas. We didn’t make a huge fuss over Christmas beyond presents, thank you to all who sent me and Marcus something.


The present I got the most of at Christmas may well be a surprise for many of you.


Before Christmas I mentioned, worried about running out of Maltesers for my nighttime drinking chocolate, adding them makes it delicious. I’m not lactose intolerant so I can have drinking chocolate. Mentioned, well maybe that’s an understatement, hence the above.


I invested in a Piano / Keyboard for Marcus for Christmas as he is probably going to do A’level music and he has been using it a lot, which is great!


Talking of exams Marcus did well in his mocks so is on course for higher end grades in his GCSE exams in the summer.


My work on my book is progressing, we are now at the stage after editing, where it needs to be typeset, so we are currently in the process of finding someone who can do that for me.


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




Updates List

! STOP PRESS !

Well it was an and finally as this update was in its final draft, but now one of the District Nurses has pulled my Nephrostomy out. The only way this happens, when it is running properly, which it had been, is when your too careless in handling it. Not that she’s admitting that it was her fault. Do people ever admit fault? No and now we’ve found out that I was the last call of her shift, rushing to go home? Yes, me thinks so.


We’ll see what the hospital says, but hopefully as I have a Stent in place in the Ureter it will only mean an earlier appointment for a new Nephrostomy to go in, rather than anything more urgent.

P.S.

Despite everything, I do still think It’s a Wonderful World. The song It’s a Wonderful World as sung by Louis Armstrong truly sums up how I feel about life at the moment.

! STOP PRESS 2 !

After over 6 months we’ve received the response from Yorkshire Ambulance Service about their failure to send me an Ambulance last July when my heart rate went to the highly dangerous 170 to 220 beats per minute. A heart rate which was of huge concern to the Accident and Emergency doctor, within 3 hours of them refusing me an Ambulance. Unfortunately the response is the expected whitewash.


Yorkshire Ambulance Service cleared themselves as they say they followed the national system, based on the symptoms given, correctly. Maybe they are technically correct to say this, but the caller taker did not listen to what was being said about my ‘whole’ condition and needs.


They also make excuses about how under strain they were at the time blah, blah, blah and that they can’t attend everyone who rings 999 quickly, even though everyone expects them to. Actually, that under estimates us, what we expect an appropriate quick response if we ring 999, as we ring 111 or my doctors when we don’t need a quicker ‘emergency’ response. Yes we understand that those in cardiac and respiratory arrest are higher priority, but to fob us off to the local GP service was incorrect on this occasion, which they don’t acknowledge.


My brother now says the 999 and 111 services are now just tick box medical services, not fit for practice. I think this is going a bit far but I can see his point because we rang Emergency 999 and didn’t say the right words no ambulance was sent, but when we rang 111 and said certain magic words, an ambulance dispatched.


We are fortunate that we live near the hospital so the Ambulance Service not turning up wasn’t fatal for me, but if I’d lived 2 to 3 hours from it in the middle of Lincolnshire say, who knows. All we want is for their systems to categorise people correctly and save lives. The 999 and 111 systems unfortunately don’t currently seem to categorise need well.


My brother’s summary of their letter is that Yorkshire Ambulance Service is saying that they were right to refuse me an ambulance, that my brother was right to take me to A&E himself as this got me seen and treated quicker than the ambulance service would have got me there. His conclusion is that, reading between the lines, they are admitting that their service couldn’t and can’t cope with demand and that it is not fit for purpose. I don’t think they are admitting this, but I do think that my experiences show that the categorising of need within the systems can definitely be improved.


If we are to take this matter further it would be on this basis, but I doubt that is something the systems will accept as a reason for taking this further, so we may just leave it with the unsatisfactory reply we’ve had.


Overall I still appreciate what we do get in this country, even if there can be ‘issues’. I’m so glad for example that we don’t have to pay for being taken by ambulance. That’s what totally mind boggles me about the US system.