"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.
Penultimately following up on my day in my life post before Christmas which emphasised
the real struggles I have day to day, I would like to add that I can see, I can hear,
I can taste, I can smell, I can eat. My sense of touch / feeling may be reduced but
given my spasms that isn’t always a bad thing and medicines help manage the worst
of them. For me having these senses balances out, in a big way, the other struggles
in my life. Having these senses is so important and a blessing for me. A lot of people
can’t see, some people can’t speak, I’m lucky that way and I’m very privileged to
have them in this wonderful world, and despite everything it is a wonderful world.
As I’ve always said
Life is not measured by the number of breaths you take, but by the number of moments
that take your breath away”
And thanks in a large part to Steve I’ve had many of those in my life, be it seeing
shooting stars in the night sky whilst in Florida or moments on our trips to Machu
Picchu, Angel Falls, Iguassu Falls, Jamaica etc
I’m still here, I’m still alive, I’m still kicking (spasm kicking definitely).
Things could be a lot worse, despite all my trials and tribulations I am still very
lucky. I really appreciate what my carers do for me, despite the stress I can cause
them and I appreciate the funding I get for them in the UK; and the NHS which is
still keeping me alive. I appreciate what I get, as I realise I wouldn’t receive
it in many countries.
I am the cat that has already had 16 lives, and I plan on having many, many, more!
Finally I want to say congratulations to Tigga (Marcus’s second mum / big sister)
and Tara on the birth of their son Finley, enjoy the parenthood journey with him,
it’s a fine one.
It’s time for another update, I wanted this up around Christmas, but you can’t the
staff to work to deadlines anymore, now when I was young, we used to have things
finished way before deadlines, just because……. Enough on that, onto the update.
In September you will remember I went to the Royal Hallamshire Hospital for my Nephrostomy
to be changed and for a Stent to be put in place, but rather than having it done,
I found myself being turned away as they had cancelled the procedure without them
The rearranged procedure took place on the 27th October and they successfully changed
my Nephrostomy and put the Stent in the Ureter to hold it open more, and allow urine
and Kidney Stones to more easily pass between the Kidney and Bladder. It was a day
that dragged; more for my brother than me probably, as I was telling jokes and listening
to music on his phone. It took time because they struggled to get the Cannula into
a vein before the procedure and then they wanted me to stay for 2 to 3 hours after
for precautionary observation; something they had not warned us about beforehand.
We therefore didn’t get back home until nearly 4pm, but at least all went well.
Another problem on the day was we couldn’t find a disabled parking space at the hospital,
all full. My disability vehicle at the time was 7 foot high and this meant it couldn’t
access the disabled parking spaces in the multi story car park at the hospital. We
ended up blue badge parking on double yellow lines at the top of the hill and having
to trek down to the part of hospital where the Urology is situated, not ideal.
Did you notice, I said “My disability vehicle at the time”, this is because since
then I’ve had to buy a new one, more on this later.
Since the new Nephrostomy was put in I’ve generally been healthy but I’ve been on
the edge of a Urinary Tract Infection (UTI) a couple of times, fortunately on both
occasions we have prevented it developing.
The first time was on Saturday 18th December. Was I trying to get back to hospital
for Christmas? If so I failed!
On the Friday I was not totally with it, but the cause was difficult to pin down
as I was also exhausted. As my confused state carried on into the Saturday it was
decided to call the non-emergency 111 service because the local doctors were closed,
as is often the case when I am ill. The outcome of the call to 111 was to our surprise,
them sending an ambulance out as a priority though not at emergency pace. This seems
to have been because when my brother was ringing 111 my speech was slurring, which
we reported, and this seems to have upped me priority wise. In the less than an hour
it took them to turn up I had a nap, which meant, due to this little bit of rest,
I was no longer slurring my speech by the time they arrived.
The paramedics did their checks and discussed my condition with my brother, their
conclusion, as my temperature was slightly up was that I was probably on the edge
of a UTI and needed antibiotics. As none of them was qualified to prescribe them
they rang the local GP collaborative, and a doctor rang them back within half an
hour, during which time they admired the myriad of things Steve and I have collected.
The doctor concurred with them and prescribed antibiotics, this meant within 2 hours
of the call to 111, I was starting on a course of antibiotics, much quicker than
we expected. The slurring speech quickened things to my advantage.
It definitely was a UTI brewing; soon after the antibiotics were started my Nephrostomy
started running again which it hadn’t done for a couple of weeks before this.
We had discussed the non-running Nephrostomy with the Urology Assessment Unit and
they had said not to worry as the Stent was holding open the Ureter between the Kidney
and Bladder and the Urine was running fine that way. It seems they were both right
and wrong, as I was peeing fine, but we suspect a tiny blockage at the end of the
Nephrostomy is where the UTI brewed.
A suggestion they made at the time was that we ask my doctors to prescribe prophylactic
antibiotics so we can get any potential UTIs hit quickly. My brother tried to sort
this on the phone with my doctor’s, as they’re still not letting people access the
surgery normally, but he failed as no appointments were available, instead he had
to resort to writing to them.
This delay meant we didn’t get the prescribed antibiotics in time before a subsequent
infection starting in mid January. This was in part because my drugs are now delivered
by post from a pharmacy in Liverpool as we’ve given up trying to get the doctors
allocating certain drugs locally and others nationally. We use the Liverpool Pharmacy
as it can provide some drugs with a longer shelf life. The doctors IT systems just
can’t cope with it.
Fortunately the local doctors know my condition very well and were very responsive
when my brother rang them about this second UTI. Within 2 hours of my brother ringing
we had antibiotics via the local pharmacy. 2 hours isn’t bad given that my brother
waited for 25 minutes to get through on their phone system in the first place, not
good. Once through however the receptionist went straight to chat with a doctor and
he got back to my brother about half an hour later. As he knew that my brother knows
my condition well, he was willing to prescribe antibiotics without a home visit,
meaning just over half an hour later they were collectable from the local pharmacy
and shortly after that in me.
Overall the NHS and its systems have worked well enough for me during this update,
but you can see where the main issue is, accessibility.
Lack of accessibility means delay. I’ve been fortunate that most of my needs have
been met on time and nothing truly urgent has so far been delayed. So far is the
key, I am now overdue for the Nephrostomy change, it’s meant to happen every 12 weeks
but we still haven’t heard about this after 12 weeks. We still have no date for for
the Kidney Stone removal operation and we were told when we chased my 6 month overdue
Spinal Injuries check-up / Botox injection appointment, that they are currently reducing
face to face appointments.
What about other people’s health?
Grandma was unfortunately unwell after Christmas, with a Bronchial infection, which
I think she and my brother had passed between each other until she needed antibiotics
and bed rest to get better from it. Her doctors were very prompt in response to my
brother’s call to them, and much easier to get through to on the phone than mine
ever are. After a home visit they prescribed antibiotics, but also insisted on a
Covid test, predictably negative. Negative with the caveat that it still might be
Covid, good grief.
I am vulnerable to Covid, but even I wonder if we’ve got the balance right? Are as
many people going to die of Cancer etc longer term as we save from Covid? My views
are mild really, I can see my brother biting his tongue, being very polite, when
talking to medical professionals and hard lockdown advocates.
Fortunately Grandma is on the mend now as is Marcus after he dislocated his knee
during the Autumn term. We found out from this that he now has to go to Adult Accident
and Emergency as he is 16.
Grandma is getting older and needs more help from my brother for all things as the
Alzheimer's progresses, but she is still recognisable as herself which is a great
That’s enough about health I think, lets get back to me having a new vehicle. What
happened there was that the airbag sensor on my 17 year old vehicle stopped working
and needed replacing, unfortunately the part had been discontinued and was very scarce.
As the vehicle’s MOT was coming up, and failing it would mean the vehicle wouldn’t
be allowed on the road, we couldn’t afford to wait around to get a replacement part
so I really had to purchase a new vehicle. I choose to buy privately rather than
get one through Motability as it means I keep the mobility part of my Personal Independence
We found a place near Chesterfield that was selling a number of Wheelchair Accessible
Vehicle. I went down to South Normanton and tried out a number of options, to see
how they suited me and my chair. It turned out that the best one was a nearly 6 year
old Citroen Berlingo. It wasn’t cheap at all but it was the right vehicle and surprisingly
had done less than 7,000 miles in all that time, a definite plus.
That’s purchase was made in November, which meant it was nicely out of the way before
Christmas. We didn’t make a huge fuss over Christmas beyond presents, thank you to
all who sent me and Marcus something.
The present I got the most of at Christmas may well be a surprise for many of you.
Before Christmas I mentioned, worried about running out of Maltesers for my nighttime
drinking chocolate, adding them makes it delicious. I’m not lactose intolerant so
I can have drinking chocolate. Mentioned, well maybe that’s an understatement, hence
I invested in a Piano / Keyboard for Marcus for Christmas as he is probably going
to do A’level music and he has been using it a lot, which is great!
Talking of exams Marcus did well in his mocks so is on course for higher end grades
in his GCSE exams in the summer.
My work on my book is progressing, we are now at the stage after editing, where it
needs to be typeset, so we are currently in the process of finding someone who can
do that for me.
Well it was an and finally as this update was in its final draft, but now one of
the District Nurses has pulled my Nephrostomy out. The only way this happens, when
it is running properly, which it had been, is when your too careless in handling
it. Not that she’s admitting that it was her fault. Do people ever admit fault? No
and now we’ve found out that I was the last call of her shift, rushing to go home?
Yes, me thinks so.
We’ll see what the hospital says, but hopefully as I have a Stent in place in the
Ureter it will only mean an earlier appointment for a new Nephrostomy to go in, rather
than anything more urgent.
Despite everything, I do still think It’s a Wonderful World. The song It’s a Wonderful
World as sung by Louis Armstrong truly sums up how I feel about life at the moment.
! STOP PRESS 2 !
After over 6 months we’ve received the response from Yorkshire Ambulance Service
about their failure to send me an Ambulance last July when my heart rate went to
the highly dangerous 170 to 220 beats per minute. A heart rate which was of huge
concern to the Accident and Emergency doctor, within 3 hours of them refusing me
an Ambulance. Unfortunately the response is the expected whitewash.
Yorkshire Ambulance Service cleared themselves as they say they followed the national
system, based on the symptoms given, correctly. Maybe they are technically correct
to say this, but the caller taker did not listen to what was being said about my
‘whole’ condition and needs.
They also make excuses about how under strain they were at the time blah, blah, blah
and that they can’t attend everyone who rings 999 quickly, even though everyone expects
them to. Actually, that under estimates us, what we expect an appropriate quick response
if we ring 999, as we ring 111 or my doctors when we don’t need a quicker ‘emergency’
response. Yes we understand that those in cardiac and respiratory arrest are higher
priority, but to fob us off to the local GP service was incorrect on this occasion,
which they don’t acknowledge.
My brother now says the 999 and 111 services are now just tick box medical services,
not fit for practice. I think this is going a bit far but I can see his point because
we rang Emergency 999 and didn’t say the right words no ambulance was sent, but when
we rang 111 and said certain magic words, an ambulance dispatched.
We are fortunate that we live near the hospital so the Ambulance Service not turning
up wasn’t fatal for me, but if I’d lived 2 to 3 hours from it in the middle of Lincolnshire
say, who knows. All we want is for their systems to categorise people correctly and
save lives. The 999 and 111 systems unfortunately don’t currently seem to categorise
My brother’s summary of their letter is that Yorkshire Ambulance Service is saying
that they were right to refuse me an ambulance, that my brother was right to take
me to A&E himself as this got me seen and treated quicker than the ambulance service
would have got me there. His conclusion is that, reading between the lines, they
are admitting that their service couldn’t and can’t cope with demand and that it
is not fit for purpose. I don’t think they are admitting this, but I do think that
my experiences show that the categorising of need within the systems can definitely
If we are to take this matter further it would be on this basis, but I doubt that
is something the systems will accept as a reason for taking this further, so we may
just leave it with the unsatisfactory reply we’ve had.
Overall I still appreciate what we do get in this country, even if there can be ‘issues’.
I’m so glad for example that we don’t have to pay for being taken by ambulance. That’s
what totally mind boggles me about the US system.