"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.
Building walls with my habit of habits- December 2017 to July 2018
It’s time for a new update, although compared with some times in the past I’ve really
been quite boring since the last update. Don’t worry I’ve not been boring enough
to just talk about the good old English weather, but having mentioned it I must say
it hasn’t been the usual ‘good old’ English weather this year at all! No its been
either snowing or desert weather this year, with hardly a raindrop to be seen, alright
I might be exaggerating slightly but its felt to me that when I’ve gone out its been
much too cold or much too hot.
There’s only been Cold Cold Snow and Hot Hot Sunshine, Trust me I’m an MS’er
I’m going to start with the most important news, I got another new carer in February
and even better it was Clare! Clare mainly works with me at the weekend and we both
enjoy it when I’m able to get up to Grandma’s, especially when we can shade-bathe
in the back garden.
Clare, me and Grandma, shade-bathers.
Clare and me.
I don’t know if you can see it very well on the photo on the left but Grandma let
her garden grow like a meadow this year, it was a beautiful site, see below.
The other main news, is that I have been talking to a Psychologist who has given
me a diagnosis, which wouldn’t reflect all that well on me if I was a fully healthy
individual, but I am not. I know it might come as a shock to you but NO I have NOT
been faking this illness for years, just to claim benefits! NO its very real and
bloody horrible too!
The diagnosis, yet to be fully written up, is that I have difficulty taking information
aboard and am very rigid in my thoughts, probably due to lesions in the brain caused
When I say difficulty, well the diagnosis say that’s an understatement. There are
3 ways of taking information in, through reading, listening and I forget the third.
What it comes down to is that I can’t read due to my eye shimmer and that I am only
really left with the use of listening to learn, and that I am no good at that. There
is a 0-100 scale they use to measure remembering, cognition and thought. Most people
are between 25-75 on it, well I don’t even make 0!
Its a weird scale as you can score less than 0 and more than 100, anyway as I said
in terms of listening I score less than 0. I can hear my brother saying I could have
told you that.
Interestingly it turns out that if you talk to me in a structured logical way, I
can do better, yes I score higher, yes higher than 0, yes a whopping great 5!
That’s the official diagnosis!
So what were peoples reactions, to this?
Good we have a diagnosis it should help us get more funding for your care. (Until
they move the goalposts again.)
Bad, You’ll use the diagnosis as an excuse for your habit of habits
Yes, but Sylvia can remember more when she’s really interested!
There is truth in all these reactions probably but the diagnosis is correct and its
something that reflects who I have now become,
A LADY WHO HAS MADE A HABIT OF HABITS
My brother says I am restricting myself by building a wall of limiting habits around
myself, this is true, but I have to, otherwise anxiety takes over, building walls
with my habit of habits, comforts and calms me, even if it help nobody else, I must
do it, there is no other option.
I mentioned funding above so I’ll continue the update on this topic. I’m currently
going through re-budgeting and I have unofficially heard that I have managed to secure
a small increase to my yearly budget, this increase will solely be from social services
funding. Fingers crossed I will soon get the official notification and funding very
soon and be able to say an official thank you.
This does not mean I get all the funding I need to cover the costs of my carers,
I don’t, family privately tops it up, I am very lucky they can afford to do that
because if not I’d have to cut back my carers hours.
How I’m still joint funded and not Health only funded I don’t know, we’ll see what
the next Clinical Health Care (CHC) assessment brings. I’ve been told if its after
October 1st it will be under new funding criteria, and the new criteria should reflect
my needs better, but I’ll wait for the outcome before believing that. Trust CHC,
What is worse is that my care needs in terms of hours are likely to go up as my habits
put an increasing psychological strain on the family, but I need those habits, not
just that family is becoming less able to do the care Grandma is getting older. These
are both also reasons why my brother had to stop being a main carer at the beginning
of the year, and why I got Clare, yey, and why I’ve got an over-squeezed budget,
My habits are my habits and I need them.
That does not mean that all the habits are good, they’re not, even I recognise that,
I’m not totally stupid, BUT I STILL NEED MY HABITS.
A case in point is my teeth, unfortunately for them I have had the habit of needing
to drink something all the time, or hoard food in my mouth. Over time this habit
of firstly drinking litres of tonic water a day, secondly hoarding grapes all day
in my cheeks by my teeth, thirdly hoarding watermelon all day in my mouth by my teeth
and lastly by hoarding sweets in my cheeks by my teeth all evening, has rotted many
of my teeth away.
Ok time to confess, I’ve either had, or am going to have nearly all my back teeth
out. In the autumn I’m going to have to have a general anaesthetic so they can take
a least 11 out that my habits have sent beyond repair, BUT STILL I NEED MY HABITS.
Another habit that can annoy is that I have become addicted to Alexa, I’m sure there
are times when I’m saying Alexa, Alexa, Alexa, that people want to strangle me, but
it’s great to have music etc at your tonsil tips. I don’t think I help myself by
having the preference her playing music whilst I am watching TV, I don’t always get
my way with this, but I try too, as it’s my preference, my habit. That sounds painfully
close to being an excuse doesn’t it, but it isn’t, no way, not ever.
Looking back at this update, it’s quite full of things, it’s not that boring, even
though I have been relatively boring. I guess one of the less boring things I did
was compose The Meaning of Life aka John Shuttleworth should be Prime MinisterPoem.
Click the link if you haven’t read it before, you want to refresh your memory or
just bamboozle your poor brain.
My book of Poems, Jokes and Riddles is coming along, being re-edited again, but hopefully
it will soon be ready for professional editing and then for publishing. Not sure
of the status of my life book, whether I’m going to pursue it, I’ll decide after
this ones done.