"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.
It’s the start of a new year, so I thought I’d do another update for my website as
there is quite a bit to update you on since June.
I’ll start with the most important people to me, my carers, you might be slightly
surprised to hear, given my previous quickish turn over in carers, that no one has
left, both Verney and Tasha are still doing two days a week with me and we’re all
still surviving each other. Additionally in September I recruited Yvonne, she is
now tucking me in 4 nights a week, with the addition of Yvonne to the team I definitely
have the best team of carers I’ve ever had, I call the team ‘Ace Care.’ We can now
cope with people going on holidays, taking annual leave, without having to resort
to using agencies, yippee.
I haven’t really mentioned it before but over the last few years I have been feeling
more and more nauseous on a daily basis, it’s probably something that’s related to
my bouts of pneumonia back in 2012 & 2013 because the symptoms date back to about
then. Anyway the nausea this year has been worse than ever and really makes my life
a misery when I can’t get relief from it. Nausea relief comes in two forms, throwing
up or burping, neither of which Lady Sylvie likes to do, but both of which are preferable
to the feeling nauseous, ad-nauseam.
Throwing up used to be a problem in 2012 & 2013 because I was so underweight and
my throat muscles were so weak that I was at risk of miss-swallowing it back down
the wrong pipe, but is not really a problem for me anymore as I am now physically
stronger. However burping is still preferable to up chucking and to aid with this
we introduced tonic water to my regime back in July. Verney is now regretting suggesting
this to me as the tonic water helps, but me being me, I have taken drinking it to
an extreme, anyone know, where the local tonic-aholics anonymous is?
We’ve not really got to the bottom of why I feel nauseous, my stomach having nothing
really solid to digest for years probably hasn’t helped, so I’m trying to eat a bit
more solid food now, still for pleasure not sustenance. I’m having shepherd’s pie
at the café and may ask Steve for some Sunday dinner when he cooks it for Marcus
& himself. I again had a carvery when meeting my friend Amanda and I ate a lot, well
for me it was a lot, of the lovely Christmas dinner Steve cooked this year.
I think in part the nausea may also be caused by the MS changing, but there is also
an element of my brain having learnt all the twitches of my stomach, so it notices
and reports the nausea at times when other people wouldn’t notice it. My neurologist
suggested this and I think he is right to an extent because I don’t feel as nauseous
when my brain is really distracted, like when I’m out chatting with friends.
I think there’s also an element of real nausea due to MS in there but I can’t be
sure about how much is brain induced and how much is real as I and MS are both much
too entropic for a firm conclusion.
Other health news is that I now have arm and hand splints to try and stretch the
muscles and stop further permanent contraction of the muscles in my hands and arms.
I’ve only used these intermittently so far as I don’t really like them, but I will
start using then more from January and then slowly build up the amount of time I
can wear them each day.
Further health news, potentially perturbing health news, is that in the summer they
found out that I have a 4.6cm bladder stone, somehow it had been missed over the
years as it grew. A bladder stone of that size is not small and the only way to get
it out is through major surgery, which I planned to have in December, thinking that
health wise it was best to get it out even though there is always some risk when
undergoing surgery and the MS could progress again after it.
So I went into hospital in December, with this plan in mind, but then late in the
afternoon the anaesthesiologist came and was concerned about the risks of the operation
as the result of my breath puffing test at the pre-op assessment had been abysmal,
my word not hers. The operation to get at the bladder cuts through muscles in your
torso that help you breathe, inhale and exhale, something I hadn’t really been aware
of and she explained that this and my lack of breathing strength, upped the risk
of the operation. She said I would be totally reliant on the ventilators, post-op
and while she was as certain as possible that she could get me through the operations
there were still big risks after it, I would need to be in the high dependency unit
for a while to ensure there was support for my breathing and to reduce infection
risk which she estimated there would be approximately a 50% chance of contracting.
I didn’t make a decision that day but waited until after I’d talked to my consultant,
Ms Read said given that my bladder stone hadn’t seemed to have grown in the last
year and as it isn’t causing me any problems, she was happy for me to choose not
to have the operation, I could visit the hospital every 6 months or so to keep an
eye on it. She was equally ok with going ahead with the operation, and would have
recommended it had I been fully healthy.
I therefore had to quickly decide what to do, it was my choice as it was elective
surgery, and it had to be a quick choice as this discussion was taking place at 8am
on the morning of the operation. I couldn’t decide whether to go ahead with the operation
now, with all this new information on risks worrying me. My brother then said, by
not being able to say yes I want the operation now, I was really saying no I don’t
want it now, it’s better to leave it until later. He was right; it was just that
I was panicking a bit about making the right choice.
I made my choice, to come out of hospital not having had the operation, on balance
having the operation was riskier to my health than not having the operation, so it
was not worth it. Maybe once the health risks of the bladder stone outweigh the risks
of the operation I’ll have it, but not now, that’s my choice. I want to LIVE.
Choices, you have to make them, the key thing is to make the best ones you can, over
my life I think I’ve done this more than not, unlike this selfish care quality commission
inspector, spotted parking in a disabled bay when I went for my pre-op assessment
at the Hallamshire Hospital.
You can see the disabled only parking sign to the right of the car.
Right hand piece of paper:
TOP: says CQC Inspector at SCH
BOTTOM: (In Pencil), Parking was supposed to be reserved but i couldn’t find it.
Dear Mr / Mrs CQC (Care Quality Commission) Inspector
I am giving you a FAIL mark! Why?
For thinking are you are such a VIP that you could therefore park in a Disabled Bay
whilst assessing the Royal Hallamshire Hospital in Sheffield, just because you couldn't
find your reserved parking space.(I saw you did this as I was it the RHH for an appointment
yesterday, and the photo evidence is below). Naughty, naughty, you know what you
did was both illegal and morally wrong; emblazoning your excuse in the front window
of your car doesn't make it right.
So for being VIP (Very Ignorant Person) person, Mr / Mrs Don't Care Quality Commission
Inspector I award you a FAIL.
Also please do not leave Sheffield before reporting to me to pay your PIG (Parking
Thank you. Sylvie Wright
What chance do we have as people, if the system is run by people like that?
On a more positive note the good news health wise is that I was exactly on my personal
target weight of 8 stone at my weighing.
Another great thing to happen since my last update was that I got a birthday greeting
from the one and only John Shuttleworth, and his manager Ken. I couldn’t believe
it, I didn’t believe it was real, but it was. Here’s the proof
My friend Eddie sorted it for me, by contacting Graham Fellows who plays John Shuttleworth,
wow the greatest birthday gift any girl could get, thanks Graham (John), Eddie, it
was a fantastic surprise.
Talking of birthdays, Marcus had his 10th birthday last year, can you believe it,
I can’t! Here’s a recent photos of him, which I love.
I’m seeing Double, hehehe
As usual Marcus and his dad went to Florida this year, with Marcus again going to
school over there. I missed them as usual but I’ve generally been positive in November
and December and trying to remain so by doing affirmations and feeling the fear and
doing it anyway.
What do I mean by this?
I’ve been re-listening to an audio version of the book ‘Feel the Fear and do it anyway’
by Dr Susan Jeffers.
The ideas in this book were some of the key things which enabled me to change my
life, back at the end of the last century. They enabled me to make myself believe
I had a future and was worth a place in the world. Affirmations, repeated positive
statements as fact, enabled me to make myself believe it was so, that I really was
worth a place on this planet, they stopped me wallowing in a mire of depression.
In a way I brainwashed myself into a positive state of mind, but as brainwashing
has negative connotations maybe brain-enabling is a better description of what feeling
the fear and doing it anyway lets you do. I have returned to these ideas now and
they do help still, I can see how they worked in the past and am working on adapting
them to help me now.
I would thoroughly recommend this book to anyone who has any anxiety or depression,
as she says in the book, just by trying it; you’re a success.
Talking of books, the latest news is that my book is progressing, albeit slowly.
We’re about halfway through an edit to create version 2 of the book. There was quite
a hiatus in doing it last year but I’m optimistic we’ll get through to a completed
version 3 by the middle of the year. How long will it take to re-edit more after
that, I don’t know, probably a good long time but at least the book is progressing.
Naturally whilst I’ve got my brother working on that I’m not stopping occupying my
brain with other projects, if I did I’d become a neurotic mess, and that would be
ugly for everyone, including me.
So what have I been doing, well I’ve been revising some of my old poems, see www.livingwithms.co.uk/poems.html,
and creating a really, really long one that covers my life story. It was originally
just meant to be from after I met Steve but it’s expanded with a will of its own
since then. I hope to get the revised poems and the new life poem up on the poems
part of this site sometime in January or February, but as I keep adding to the life
poem it may be later. Once I’ve done that, I’ll have to find another brain filling
project, ideas and suggestions are welcome, waits in trepidation for suggestions
to trickle, or is that flood, in.
It’s also been a great end to the year in terms of re-contacting old friends from
University, with possible visits from some of them in the New Year, being an added
bonus, I’ll report on them next time after they happen. I love keeping in touch with
friends, especially by phone, letter, Skype or best of all visits. Facebooks is ok
for updates too, but it feels less personal and special to me. One letter I want
to especially mention is one I got from my friend Lily-May in Dunstable, who is 91
years young, in the letter she told me of her memories of seeing the total solar
eclipse of the sun in 1927 when she was only 3. I mean wow, seeing a total solar
eclipse, the partial solar eclipse I saw in Sheffield in 1999 was great enough and
equally wow, remembering it from when you were 3.
Talking of things that happened a long time in the past, we’ve been adding interesting
historical information to our family website www.dustandstars.co.uk a website primarily
aimed a remembering members of the family who are no longer with us. Originally it
was created to remember my dad and grandad but it has been slowly expanding over
time. The last update added information about my great-grandad (my mums, mums dad)
Joseph Frederick Bear who was a conscientious objector during World War 1. It’s interesting
to see the official documentation from the time, which is already on the site, it’s
planned to add his personal letters at a later date, as time allows, but brother
knows my book has a higher priority than to the family website, sorry website.
Living now is more important than what happened in the past and what will happen
in the far future, for me it is about living and making the most of the moment, forward
planning further that is too daunting and to me usually seems plain daft. That isn’t
to say others shouldn’t, I hope that Steve’s plan to take Marcus camping in Wales
again this summer happens as they both had a great time father, son bonding last
summer. Teaching your son how to pee in a bottle and to beat you at chess whilst
sheltering in a tent from the rain is what life’s all about isn’t it? With the added
bonus of the beauty of the Gower Peninsula thrown in, Steve came back raving about
what a great holiday they’d had.
Fortunately I still get to bond with Marcus, as I’m still picking him up from school
most Tuesdays, although my being in bed or the wheelchair is a bit of a barrier to
hugs, but Marcus surprised me with a spontaneous one on Christmas day when I was
lying on my mums sofa and was easier to hug, he also told me I’m a great mum, oh
how I love my boy, so, so much.