"All our dreams can come true, if we have the courage to pursue them"
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.
Half a Century
May 2023 to December 2023
I seem to be falling into a six monthly routine with my autobiographical updates,
and as usual I will start off with my health.
Since May I have only had two spells in hospital, though they were close together,
in late September and in early October. Both were due to kidney infections. The first
one set in just before my 50th birthday.
On the morning before my birthday, I was at icandy, where I go to get my nails done,
and the lady who does them commented that I was not my usual self, being much more
subdued. In the evening Tony was concerned enough to call my brother, who came down.
After a conflab they agreed it would be best for my brother to take me up to A&E,
as he has numerous times before.
We arrived at A&E shortly after 8pm and the receptionist prioritised me for triage,
this happened promptly and we were quickly allocated to a space in A&E, in their
blue zone. There I was seen by the doctors, bloods were taken, my stats were taken
and my condition monitored. It was decided quite early on that it would likely be
a Urology, kidney infection issue but they needed blood results to confirm a few
things. They needed to redraw some of the bloods as the initial ones coagulated.
Things took time, as they do, and it wasn’t until after 5am that transport arrived
to take me to my second home, ward F1 at the Hallamshire hospital. No sleep for my
brother that night.
My big celebration for my 50th birthday, was to get admitted to hospital. Trust me
to do things differently. A few days later my brother asked me if I’d done it deliberately
to get double wishes, one lot for my birthday and another for a speedy recovery.
I was in a very good mood that day and replied yes.
The reality was however that on my actual birthday I was just in recovery mode, and
I didn’t really start interacting with the ward until my birthday had passed.
I recovered ok, but as I was on IV antibiotics I couldn’t be discharged immediately.
I was eventually allowed home a fortnight later on the 29th September.
Unfortunately a week later one of the District Nurses made a mess of changing the
Nephrostomy bag and dressing. After she redressed it the tubing was kinked. This
meant that the urine was unable to drain from my kidney into the Nephrostomy bag,
not good! Tony spotted the error, and corrected it, unfortunately what neither he
or my brother realised was that the correction wasn’t a permanent fix, so the tube
kept re-kinking. What my brother should have done, in hindsight, was get the District
Nurses to come out the same day to redress the site, unfortunately this didn’t get
done until the Monday. On Monday 9th October, a different District Nurse made a professional
job of changing the dressing, which allowed the Nephrostomy to drain properly. Unfortunately
in the meantime an infection had, had time to brew within the kidney.
We knew from the dark colour of the urine that an infection was possible, but Cheeryn
and my brother were hopeful that with the Nephrostomy draining properly, it would
not set in. My brother left at 5.30pm thinking he would come back down around 9.30pm.
Once back at mine he expected to stay and have to keep an eye on my health overnight.
The hope was that I would be fine, but he would be there if this was not the case.
What actually happened was that Cheeryn had to ring my brother at 6.30pm as I had
taken a sudden turn for the worse. My brother said he would come down, but if needed
Cheeryn should call for an ambulance. Before they’d made a definitive decision they
got cut off, this is when Cheeryn made the decision to call 999. An ambulance arrived
quickly, at the same time my brother did. Cheeryn definitely made the right call
as I was not able to communicate at all, due to my body entering it’s shutdown to
cope mode, meaning hospital was a must. The way I presented made the ambulance crew
think I may have had a stroke, so they rang the Stroke Unit and I was whisked there
rather than to A&E.
This had the advantage of quick treatment, essential if it was a stroke. My brother
and Cheeryn thought it was unlikely, but weren’t going to double guess the paramedic.
So lights flashing I zoomed up to the hospital and was promptly scanned for a stroke
before being taken to ward L2. I was on the ward within about an hour. Their diagnosis
being that it was likely that there hadn’t been a stroke. This all happened really
quickly, no slow bother with A&E. I arrived on the ward during shift change, so it
wasn’t until a little later that the doctor talked to my brother. This discussion
helped confirm the kidney / urology infection diagnosis.
Once I had settled they were going to move me to another ward, either L1 or F1 I
think, but then a swab came back positive for MRSA, so I was moved to a single room
within L2 instead. Later in the week my brother came to visit and he said entering
my single room was like coming into a disco. This was because my boombox was playing
my music out loud, and me and the 2 nurses, who were doing my drugs, weren’t being
quiet either.
This stay in hospital was shorter, even though I had been rushed in this time, and
I was discharged the following week on the 18th October.
Since then I’ve been at home and going to routine hospital appointments. My health
when I am at home is similar to what is has always been, but the way I cope has changed
in the last year.
Up to about a year ago, my coping mechanisms were mainly within my own head, but
something changed after the October 2022 infection and hospitalisation. It can be
that infections can cause mental changes, not all of which rectify themselves; I
suspect this is the case for me, allied with the impact of progressing MS.
Now I often chat to ‘little people’ who are around me, on my bed often. People who
the carers and my brother can’t see. The impact of these little people isn’t always
good as I can imagine that they are sometimes getting up to no good, which upsets
me.
Another thing I do is insist the time is completely different from what it actually
is, for example that it is the middle of the night during daylight hours. This can
mean I often ask that my TV is turned off during the day, despite my having insisted
my brother programmes it every day. I guess I’m developing more irritating habits
than I had before, which isn’t a good thing for getting on well with my brother or
my carers. Oh, by the way, the TV I’m not watching is a new TV I was given for my
birthday!
My brother would say I have a looser grip on, or is it interest in, reality now than
a year ago, unless I’ve had a really great sleep, when I can be my old self again
for a short time. He would also say that sometimes I still say some things for a
reaction, because I can, not because I’m in the ‘new’ looser grip on reality, ‘new’
habits, mode. That I still push buttons, because I want to. The difficulty for my
brother and the carers is judging which it is and acting accordingly. These different
modes, don’t help me either, as my brother and carers may think I’m deliberately
acting out when I’m not. Why do I act these ways then? It’s because these behaviours
are a way for me to stay in control. I keep doing them for control, even if the reactions
that come back aren’t positive, because they are reactions I’ve made happen, which
means by making them happen I’m, in theory at least, still in control in some small
way, which I psychologically need to be.
I know my brother finds it particularly irritating when I don’t answer questions
about what I want to do, so he has to decide. Naturally I’ll then decide I want to
do what was offered, once the option is no longer there and I’ll go on about it.
This is where my brother and carers suspect I have more control over things than
my actions would often suggest. Again my need for control, my way, isn’t necessarily
a positive for me.
A positive that has happened however is that after a funding review, my care is to
continue to be fully health care funded, meaning I don’t have to make any financial
contributions myself. This meeting took place back in July, though par for the course
we haven’t yet had confirmation of my revised personal health budget a full 4 months
later. Last time it took around 5 months to sort and for the extra money to appear.
The difference in money this time will be small, albeit we expect an increase.
I think that’s most of the health related nonsense, so I will move onto the back
garden renovation I reported was in progress back in May. I am please to say that
it went well as you can see from the photographs below. It’s not so much a garden
now, but it suits me and my needs.
Carol, Steve’s sister, and me in the back garden
in June.
Since then my brother has painted the fences and shed which makes the garden seem
brighter.
Since my brother painted the fences, the wet weather has meant that the older fence
panels have deteriorated and one recently collapsed in the wind, so 3 new panels
and a couple of new posts will be going in, in December. New panels which my brother
will have to paint, which is sort of funny as he has just done the lot.
You can see my room on the right of the last picture. What the photograph doesn’t
show is the successful re-roof of it which was completed in June. I now have a nice
solid roof over my head, rather than one that was deteriorating. I won’t bore you
with photographs of it.
That isn’t it for work at my house as it has got to the stage, after 25 years, where
jobs need doing. Jobs for 2024, include
- Getting some of the fascia at the front of the house replaced as it is starting to
rot.
- Re-roofing the car port as it is in a poor state now.
- Sorting pointing work on the outside of my room.
- Getting the dinosaur and friends painted.
Number 4 is an important job, because the animals are complaining that everything
else is looking neater and they should too. They’re not wrong, especially at the
back where they are, because as well as the work already mentioned I’ve had the house
windows repainted. They will now look ok for 3 or 4 years. It is likely the windows
will need replacing rather than repainting next time, but thankfully it is a job
that can be put off for now.
2024 is lining up to be an expensive year, because after 2 years of letting Steve’s
bachelor house lie empty, after it had been wrecked by tenants who were growing cannabis
there, we’ve decided to renovate it rather than sell it as is. This is no small job,
because as well as the internal damage they did, we have to reinstate the electrics
and the connection to the grid! This is because they by-passed the electrics which
eventually caused a fire in electrical box outside the property. The blaze did not
just effect us, it also took the property below ours off the grid too as their box
was also burnt out.
This happened one evening back in October 2021. My brother was called over there
by neighbours, and had to stand around whilst the fire brigade, police and Northern
Power Grid did their things into the early hours of the morning. In the end the police
didn’t bring in crime scene investigations as the number of plants involved was ‘small’.
They took away all the plants and a lot of the growing tech, and destroyed it. We
haven’t heard anything since so it just another unsolved crime as far as we know.
When I say its no small job, I mean it, we even have to put in a new front door and
frame. It’s currently screwed shut as it was damaged when the fire brigade broke
in to check there were no people or further fires within the property. Jobs to be
done, once clearance is completed include.
1. New front door.
2. New Kitchen
3. New Carpets.
4. Getting electrical supply reconnected
5. Checking internal electrics and removing, replacing as needed.
6. Stripping everything back and re-plastering, painting.
7. New Fire Escape, an age thing, not their damage.
8. Replace the ceiling / floor between main room & the loft, as their hydroponics
soaked it.
9. Sorting any other damp patches in house from source.
10. Sort problems yet to be discovered.
Here are a few pictures of it’s current state just to give you an idea what we’re
dealing with.
Those above are just in the main part of the property and don’t include the loft
are where they had their factory, see below.
If that wasn’t a big enough job we have Steve’s Classic American cars to sell next
year. We’ve currently got 7 of the 8 up and running and hopefully it will be all
of them by the end of the year, ready to list for sale early next year.
As regards other matters, the audio book version is on hold, as Emerald has 4 A levels,
piano lessons and life to handle at the moment, more than enough with out prioritising
the poems in My Crazy Brain.
My book! —––––––>
Of Poems and Joke
Well I’ve got to keep plugging it.
Available as a paperback & e-book online & at / through most bookstores.
Talking of Emerald, she is currently filling in the deed poll form to formally change
her name to Emerald Light from Marcus Wright. She is making this change she is trans
gender and Emerald Light reflects her better than her birth name.
We’re just happy she’s confident enough to tell everyone who she really is and isn’t
hiding herself away at all.
Music is a big part of who Emerald is, and her composition, Onionade, was performed
in Gloucester Cathedral by the ORA Singers as part of their young composers showcase
during the 3 Choirs Festival. There is a YouTube stream of the whole concert. Emerald’s
piece starts at 43:40
I am proud of Emerald for getting her composition in the concert, and for composing
something different to the others. That someone else won, matters not to me. It was
unfortunate however that the car broke down on the way home, a brake pipe going on
the way out of Gloucester, but a least she and my brother were dry whilst waiting
on the M5 for recovery. This wouldn’t have been the case if it had happened around
Sheffield, as that day was one of many we’ve had recently when it not only rained
cats and dogs, but pigs, sheep, horses and cows too.
Emerald has just finished composing her first symphony, Flaming Symphony, follow
the link to hear the composition on YouTube.
To finish off this update, I have a question for you.
Can you believe Emerald is now 18?
I can and can’t believe my little baby is all grown up!
Here is a photo of Emerald and me taken on her 18th Birthday.
Sylvie Wright
5th December 2023
