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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Unpublished articles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

Updates List

Recruiting June, means that 6 daytime shifts a week are now covered by women who are at least as stubborn as me, but who care stubbornly in a way I can respect totally. Verni and June are the right types of carers for me - well most of the time, sometimes they drive me mad with their stubbornness from which fortunately, or is it unfortunately, Yvonne who mainly does evening shifts with me is learning. Aaaaah, I’m being out-stubborned by 3 stubborn ladies, aaaah. Does this make my brother who is now just doing one day a week, the weakest link, maybe?


It’s a good thing my brother has been able to reduce his care for me to one day, as it is good for us both psychologically as we are starting to drive each other round the bend at times.


It’s also a good thing because of the last few months my mum has been feeling more lonely when she’s been at home on her own when everyone is concentrating on me, especially when Steve has been out of the country on one of his regular ‘holidays’. My brother working with me less means he can be with her and help her more. This feeling of a bit of loneliness wasn’t helped by the fact that when my brother finally managed to get away on a holiday himself, that my mum was targeted by doorstep thieves, Grrrrrrrrr.


They won’t be doing that again successfully, as we’re having cctv put in at hers to catch anyone who deems to try such a thing in the future.


It’s not good what’s happened to my mum, but it has woken me up to the fact I need to think about her more, think about others more, but especially her more; so it’s been good in kicking me into being a bit less selfish towards her, and hopefully everyone else as well, including Marcus my darling boy, sorry Marcus if I’m too self-centred sometimes.


Marcus, he’s now at secondary school and it’s amazing that he’s 12 already; it seems like only yesterday that he wasn’t here, and now he’s taking a 40 minute bus ride to and from school each day on his own, and wanting to, as it proves his maturity.


Marcus is turning out to be quite musical and is currently learning the piano from his grandma; those two are so great together, as well as continuing with his trombone lessons at school.

I’m being out-stubborned - August 2017 to November 2017


I don’t know if it’s time for a new update, as it’s been a shorter time than sometimes, but when have I ever been predictable, so here I am with one. Let’s start with the good news.


As I told you last time Natasha and Lisa have finished working for me in July, August time; that wasn’t bad news, but the good news is that in September I recruited June. This is especially because June is the right kind of carer for me, someone who is stubborn with me when I am being stubborn but who is stubborn in a non-bullying, fair way.

Me and June and Marcus

(And it wasn’t Halloween!)


In this run up to Christmas, Steve is away on ‘holiday’ again. This might have caused a strain for me psychologically, with my brother being at our mums more, if we hadn’t pre-budgeted for being able to have carers in in the evening whilst Steve is away. I, well we the whole family, has been able to cope much better because we did pre-plan. I’m not sure my carers are coping better, as they have been spending more hours than ever with me. Poor Yvonne, Verni and June; what have they done wrong to deserve that fate!


Talking of pre-planning and pre-budgeting, we’re going to have to do that all over again because the organisation got in touch! Wow, yes, really. The inept, non-communicative, Clinical Health Care (CHC) got in touch!

Grandma and Marcus NOT playing the Piano.

Naturally they wanted to do another assessment a.s.a.p., yes, a.s.a.p., over a year late. We accommodated them and their inept forms in September. My brother disagreed with about half of their assessments of where my needs should be categorised; we have submitted our difference of opinion on the appropriate paperwork, though, given they make their secretive decisions behind closed doors; these opinions will probably be ignored. Yes I have a lot of confidence in them - no actually none: and guess how much contact we’ve had in the last 2 months since the meeting, since the paperwork went in. That’s right, none, just

Overall my health has been pretty stable since the last update, with my weight sticking around my optimum 8 stone. The balance we have between my meals during the day and the night feed, which drips into my stomach PEG as I sleep, seems to be working well.


We did however have a problem when my PEG blocked one Sunday when my brother was on holiday. Thankfully, Verni got me to the hospital where it was sorted quickly enough for me to be home the same evening with a new peg fitted.


The A&E doctors didn’t get the change 100% right as they displeased Sean my PEG dietician because they yanked my old PEG out, causing me substantial pain at the time. Fortunately we got away with it and no damage was done, but potentially it could have been damaged when they yanked the PEG through the stomach wall. Pulling a PEG through the stomach wall is no problem if it’s an inflatable and deflatable stomach PEG, like the one they put in after taking the old one out; but the one they took out wasn’t like that. It was one with a coin shaped piece of material holding it in place. Sean has made sure appropriate training has been put in place to ensure it doesn’t happen to others in future.


Whilst my physical health has been generally fine, my psychological state has been more varied. I have started working with Nicola the NES Psychologist to see if there are cognitive reasons for this, due to progressing MS. It’s a slow process and one I sometimes hate, as some of the questions seem very stupid to me, but it’s something I must do if we are to be able to progress onto me getting psychological help with the compulsions that run my life. My feeling that I need to burp all of the time, my constant state of anxiety and my constant need to have melon in my mouth.


Talking of melon in the mouth, as you do, my dentists put up with me hoarding it in my mouth but honestly I don’t think they’re best pleased, though they don’t say so. I am however paying the price, as I am currently having many fillings in my pre-molars and my molars taken out, due to the acid damage having melon constantly in my mouth, has caused.

Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=living with ms site - autobio 5

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

Updates List

Sylvie Wright

3rd December 2017