"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.
This is another difficult update to write, as my mum, Sally Brown, M’s (Marcus’s)
grandma, passed away in July. Difficult because she has always been there for me,
through my whole life, in health and in MS.
Grandma passed on the 20th July in the Northern General Hospital. We were fortunate
that she was able to live at home until the day before she died, despite progressing
Alzheimer’s, thanks to help and support from my brother.
It is difficult to sum up the loss of ones mum, and of ones second parent, but there
is a definite hole now both mum and dad are no longer with us; it makes a difference
to life as this update may well show.
I’m just glad for the great relationship that she and M had, how they bonded closely
over music and walking, not forgetting the odd, odd game, when M was younger.
The best way to sum up Grandma overall is seen through the tributes we got from her
friends, some of over 70 years. Tributes to Grandma. Though they reflect in many
ways a different lady than we knew as her children, not unusual is suspect.
Grandma and me in 2020
Grandma in 2021
Grandma and M in 2021
Grandma’s visits a couple of times a week, had been an integral part of my life since
Steve passed, a sign that a ‘normal’ life was possible. It was also something that
got me out of my own head, because I knew I had to be better than ‘in my own head’,
for my mum. I knew this because I wanted to do it, for my mum, especially as Alzheimer’s
made it more difficult for her. I guess my deep love and respect for her made me
want to be a better person, for her, better than I often want to be for myself.
I wasn’t the only one who enjoyed her visits, my carers definitely looked forward
to them too.
This is now gone, a light has gone from my and my carers weeks.
I think this is part of what has made bouncing back from my latest serious infection,
again due to a blocking Kidney Stone, more difficult, especially mentally.
It was in mid October, Wednesday 12th, that the latest stone fragment dropped. We
reckon it dropped around lunchtime as the consequences kicked in, in the evening
6 to 8 hours later. My deterioration was flagged to my brother at around 8pm, and
then as worse again at around 9.30pm, which is when my brother decided to come down
and see for himself, knowing that if the carers were saying I sliding down this slope
this fast, then hospitalisation was likely to be the outcome.
My brother initially tried to get me admitted to the Urology Ward, F1, direct via
the Urology Assessment Unit, as we knew it would be a blocking Kidney Stone and blocked
Nephrostomy, that was causing everything; but they refused saying I needed the extra
resources available to doctors at A&E. I can understand this decision, but I have
been admitted straight to the ward before in very similar circumstances, so the implementation
of this decision, for this reason, seems a bit inconsistent to me.
Instead my brother had to ring 999 for an ambulance which turned up about 20 to 30
minutes later as I was priority, but not urgent. I ended up leaving for A&E in the
ambulance just after 11pm and my brother followed, in my car.
A&E was having one of its busy nights so I was still in the ambulance when my brother
arrived at A&E, though I was moved inside shortly afterwards. I was slowly processed
overnight, something which was fine in some ways, as my condition wasn’t bad enough
to warrant resus support this time partly due to the Urology registrar getting my
Nephrostomy unblocked. I hadn’t chosen the best night to be admitted as the computer
systems were down for maintenance, meaning it everything was being done on paper.
It was a good job my brother was there to ensure my needs were met as I was nearly
wrongly given a penicillin based antibiotic. I had a reaction to penicillin when
I was much younger.
I was still in A&E at 10.30am when my brother left after 11 hours. Later in the day
I was transferred over to the Urology Assessment Unit and then onto F1.
I was not really conscious for the next week, as my body tried to get over the infection.
My progress wasn’t helped by the fact that I had a toxic reaction to one of the antibiotics,
which meant they were continually having to readjust their treatment depending on
what my blood results showed.
After that it was further week until I was discharged on Friday 28th October. I came
out on 4 new drugs, additional to the plethora I usually take.
Since being discharged my behaviour has been different. The carers and my brother
initially thought it was the usual readjustment home and residual infection hangover
that usually disappears within a week, but this time, things didn’t change back to
routine behaviour. The question was why? Was it the new drugs reacting with existing
drugs, was it MS progression due to the last infection, or was it just me playing
On balance they decided that the main factor was probably drug interaction, so I
got a GP appointment on Monday 7th November at which it was agreed to stop one drug,
the Amolodopine, a blood pressure lowering medication. It was stopped as it can react
with Tizanidine which I also take and because my blood pressure seemed fine.
After it was stopped I did settle a bit, I wasn’t as erratic, but my thoughts were
still all over the place, so the following Monday, my brother tried to get another
review to remove further drugs, but we were only offered a phone appointment, on
the Thursday of the following week. Due to this my brother made the executive decision
to remove all the new drugs.
The GP’s review of my brothers decision took place the following week. The GP decided
that the Iron supplement should be reintroduced as my latest blood results were showing
it was still needed. It was however switched from a liquid to tablet form, which
is good as the liquid seemed to changing how my food tasted, and not in a nice way,
it was at times making me think I was drinking blood, urrgh. The final two drugs
an anti-biotic and an acid tablet linked to it, are being left out for now, to be
reviewed by the Urology team as necessary. I think we have made the right decision
just keeping 1 of the 4 new meds.
Has this sorted all my changes in behaviour? No. Things are different. My brother
says my ways of coping have changed, that I am externalising things more, talking
to people who aren’t actually there but who I chat to to help me cope, or help me
to think I’m coping. Previously a lot of this dialogue was internal and didn’t usually
come out in my behaviours and actions. My brother also says that this may in part
be due to MS progressing, a brain change brought on by the two episodes of infection
this year, but he says he thinks its not just that or the effects of medicine interactions
or how the medicines make food or drink taste.
Side Note: It could be that my sense of taste has gone, or partially gone, due to
the most recent infection(s).
Unfortunately he also says he thinks that I am making the choice to act up, whether
it be for attention or just because I can. That I am choosing to cause problems deliberately.
His reasoning for this, is that I have historically done this sometimes, but also
because when I am talking to visitors or at appointments, I don’t tend to do it at
all or as much. In other words I can control it when I choose to.
Talking of visits it was great to see Andrew Bromiley, one of my University of Sussex
friends, when he visited towards the end of November.
Andrew Bromiley and me
I was on my best behaviour for his visit and chatted away about old times and current
times, which maybe does add something to my brother’s point that my new way of acting
is happening in a large part through my choice to act that way, not just down to
medicines or progressing MS. He doesn’t say they aren’t a contributory factor, just
that they aren’t necessarily the main factor in the change.
I think he suspects I would be better in behaviour, actions and motivation if Grandma
was still here. I wonder if that is true?
I definitely don’t want to have an overly negative impact on those still in my life,
especially on my carers and M.
Talking of M, 6th form and A levels seems to a good fit. We just had very positive
feedback from the Lower 6th Parents Evening, just a few things to work on, otherwise
continue the good start.
M has also started piano lessons, which my brother takes him to, as this is going
to be his main instrument for A levels. These are going well so far, building on
a solid, self-taught, base that M already has.
Getting back to my health and medical issues, my stomach peg, feeding tube decided
to come out, for no apparent reason a couple of weeks ago, which meant another trip
up to A&E because it had come out in a traumatic way, rather than the usual slipping
out, after the water filled balloon holding it in place bursts.
Fortunately this visit to A&E was during the day and not that evening immediately
after the peg came out. This was possible because my carers have been trained to
put a M plug in, to hold everything in place and secure until a new peg is put in.
Honestly it was all rather a waste of time and a lot of faffing about for the simple
task of putting a new one in, especially as the doctor decided against any additional
scans etc, but we are bound by rules that make it so.
Finally on the health front I am due to have the Nephrostomy changed, a routine thing,
shortly after you get this update.
What next, for this update?
My book! —––––––>
Well I’ve got to keep plugging it.
On a serious note, the planned audio book is coming along and M, who is recording
it for me, expects to get it done by the end of the year, as agreed. I’m glad it’s
happening whilst at the same time not interfering with M’s school work.
Wow; I can’t believe I only just remembered this as I was sending the announcement
of this update out. I guess a lot is happening at the moment, including a leak in
the boiler causing the heating to go off, whilst we were reviewing this update. Fortunately
the boiler is fixed for now, though it will likely need replacing next year.