"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.
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
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
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,
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
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
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,