"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.
I want everyone to know Steve made me believe that I’d be ok and would get better,
and that belief was the key to everything, because once you believe……….
Steve’s love gave me a reason for living, he went swimming with me all the time,
he made me laugh he was of jokes and Steveisms, by this I mean mad crazy larking
about when the mood struck him. That’s what I loved. It meshed with the similar streak
The belief he gave me meant that when he said, do you want to go to xyz, I said yes,
it didn’t matter where it was. When my mum reads my Life Poem back to me, I think,
did I really say yes to, and do all those things. Me who used Mobility Scooters and
Wheelchairs to get around going to Machu Picchu, Easter island, Galapagos, Mexico,
Angel Falls, just wow, thanks Steve.
I let him into my world and that’s what happened, funny really, because at the beginning
I only really wanted sex from him, but he said where does that leave me? With a one-night
stand? Yes, Steve. That one-night stand lasted over 21 years. Typical of me and Steve,
it all worked even though I didn’t plan for it.
I sometimes wish, with hindsight that I’d pushed Steve to go to the Doctor to get
his ‘pain’ checked more, because now I know what it was, I know it could have been
cured if caught early enough. Reality is though Cancer of the White Blood Cells is
a difficult one to diagnose, and even if it had been diagnosed before he passed,
he may not have survived.
I’m just really glad I gave him the ‘fun pass’ because even if he was tired and stressed
when he went away, he could come back whistling, smiling, joking and more relaxed.
Time away from me is relaxing and I’m sure the other kept his ego up. It was bad
enough MS robbed me of my sex life, but why should Steve lose his as well.
Losing Steve still hurts so much, the lines in my poem about him still sum it up
Now I feel totally destroyed,
Like I’ve been hit by a meteoroid,
I’ve lost someone who was always there. At the beginning in a really great way, later
in a less available way because of the impact of MS; but despite that he was still
there, the man I loved and who loved me despite everything. It was, he was, the solid
foundation my life could depend on, and to lose that is just so……..
Cancer is so evil, it takes people any age, it doesn’t care, it’s a real bleep, bleep,
I doubt I’ll ever get over Steve passing but I am slowly moving on from it. I am
now able to watch videos of our life together. I can cope with watching the man I
loved so much. I can appreciate what he gave me and what we did together, I can now
appreciate those memories, rather than just hurt through and through.
It still impacts on everything about me though. I now sleep less well at night and
even though not sleeping well is nothing new, since Steve passed its different, more
so. I think its because even though I didn’t really get help at night, I just knew
he was there and that psychologically was such a big difference.
As I sleep less well at night, I tend to doze more in the day, which means less sleeping
in the night a bit of a re-enforcing circle, but one that is probably here to stay.
I hope it doesn’t mean I need night carers, because I really would prefer not, but
sometimes in the night I panic a lot so having them there would be good, but still
no, not really. My brother thinks we are getting to the stage between my not sleeping
and my medical needs, that night care at least needs to be raised, as a probable
need, at my next care needs review; but I still feel like saying no, no, no to it,
even if I may really need such help now. Two overnight medical issues which occurred
recently, have also highlighted that night care might be needed, more on these later.
I do however agree that my care needs, need to be reviewed, as the current review
is a year overdue, as the system has been a bit distracted in the last year, if only
I could remember by what, mmmm let me think, maybe they are still trying to get the
answer to one of my riddles, if so its my fault.
Getting back to my health, it started getting bumpier around the time of my last
update in November as this is when I started to burst catheter balloons which is
usually a sign of bladder stones. We weren’t sure but after a telephone consultation
it was decided they would bring me in for an outpatients appointment so they could
have look and remove any if possible.
This appointment happened on the 4th February and went smoothly really, I went to
the Spinal Injuries part of the Northern General where they took me to the day case
ward area. They found that I indeed did have bladder stones and they proceeded to
remove two 1cm stones. I was home within 3 to 4 hours of leaving, good, job done,
I thought; it turned out that wasn’t to be the case.
The next thing to happen was my first Covid vaccination, I decided to have it even
though originally I’d decided not to as I’d had a bad experience with a flu vaccine
years ago. What changed my mind, quite a few things.
1. I want to be able to go out and do things, even if its just going to the local
supermarket, I want to live life more and having the vaccine would reduce my risk,
2. Talking to Doctors etc, they said there is really very little risk involved in
taking it, so I followed the science and decided to accept that point of view, especially
3. My reaction to the flu vaccine could have been to do with some flu vaccines historically
having been made using an egg base, egg is something which my system reacts badly
to even if I don’t have severe reactions to it. The Covid Vaccines are not egg based
at all so this kind of reaction was something I didn’t need to worry about.
I had to go to a local health centre for the vaccination, this happened on the 11th
of February. As it was a health centre I had the Oxford jab, like my mum had had
at a few weeks before. I like she, had no reaction to the vaccine at all, lucky us.
However within 48 hours of the jab I was in hospital as overnight from Friday to
Saturday I had a severe bleed down, below. My carer came in to find coagulated blood
in my pad. After ringing 111, my brother took me to Accident and Emergency and by
mid afternoon I’d been admitted to ward F1 At the Royal Hallamshire Hospital in Sheffield.
Why the bleed? Such bleeds are a possibility for about 3 weeks after a bladder stone
operation, I’m not sure if mine was more than can happen or less, but it was the
first overnight health event that may flag that I may need night carers soon.
The major bleed had finished before I got to hospital but I was in until the Thursday,
18th, as they treated me for Urinary Infections and made sure that bleeding had completely
stopped. Whilst in they found I still had numerous Bladder Stones and Kidney Stones,
including one about 3cm in size, so they added me to the waiting list for an operation
to sort these. An operation they class as high risk due to my medical history, but
the same one as I sailed through in March 2019, it was classed high risk then too.
I was back home for just under 2 weeks because on the 3rd March, a Wednesday, I was
readmitted to hospital with a severe urinary infection. My brother says he reckons
I may have allowed the urinary infection to get an extra hold as I had a bout of
severe grief for Steve on the Monday and may not have slept at all that night as
I’d wound myself up so tight and anxious. It also wasn’t helpful that I had to go
up to the Northern General Hospital latish on the Tuesday for a pre-op assessment,
when I was already very tired.
That is sort of by-the-by, as I did end up in hospital again. In a way it was fortunate
I did because on that Thursday one of my Kidney Stones dropped and got stuck in the
tube between my Kidney and Bladder. Remember I only have 1 Kidney. At least I was
already in hospital where I could get the scans to confirm the problem, maybe quicker
than if I’d been a new admission to the hospital that day.
I was transferred to Urology where they put a nephrostomy in to allow the pee out
of my Kidney and my system relief from the blockage. Even so I became quite ill.
On the Friday I was unresponsive to anyone, unresponsive enough that the doctors
were worried I’d had a stroke, so they treated me as if I’d had one. They’d done
this also back in 2018. On neither occasion had I actually had one, the state is
just what I go into when my body is fighting away, it has no time to waste activating
my brain at all.
They checked for a stroke with CAT scans and a MRI, the new scans didn’t show a stroke
but they did show that the MS lesions in my brain had progressed quite a bit since
the previous scans of 2018.
Surprisingly, given I was completely unresponsive on that Friday, I was discharged
from hospital the following Friday with a nephrosptomy in place.
Then on the Sunday night my nephrostomy went wrong, it blocked. This meant that the
pee had nowhere to go, so by morning I wasn’t at all well, I couldn’t communicate
properly because of the pain and feedback from the blockage. So once again I was
carted to A&E by ambulance. By the Monday evening I had new nephrostomy in and was
peeing again, which meant my body could recover.
This time the stay was longer than expected, I think as I’d come back in still showing
Urinary Infections they decided to make sure they fully blasted them from my system,
which they could only do using intravenous antibiotics. I was therefore in until
the Friday of the following week. It worked, I came out healthier than I had been
for a good while; it makes one wonder how long I might have had an underlying urinary
It would only be a short stop home again as the Urology specialists had already booked
me in for the bladder stone operation on the following Wednesday, the 31st of March.
Their advice was to get it done as recurring infections would always be a problem
with it in situ. The previous time I was discharged my brother and carers didn’t
think I was well enough to go through this operation and so would probably have refused
to take me in, but after the intravenous treatment, they weren’t half as worried,
were ok with me to going ahead with it.
During this last hospital stay I’d had a picture from a Florida Cruise, of me, Steve
and Marcus; that was a great memory but it wasn’t Marcus now, so I asked my brother
to sort one, he did, but it was Marcus who made it into a great photo, by posing
I had it with me, newly framed, when I went back in on the Tuesday for the operation
on the Wednesday.
The operation was straight forward and they successfully removed the 3cm Bladder
Stone they were after, though they failed to dislodge the Kidney Stone, which was
a secondary objective.
It was so straight forward I went home on the Friday. The good news is that since
then I’ve passed the Kidney Stone that was causing the blockage, so now I’m peeing
normally again. Well normally for me, as it mainly through the supra-pubic catheter.
What does this mean? That depends on the outcome of my next joint Radiology / Urology
appointment in early May, but hopefully it means I can look forward to being urinary
infection free in the main for a couple of years and the nephrostomy can come out
soon. We’ll also find out if I have to go back in to have my bladder washed out as
I did after the same operation in 2019.
What else is there to update you on?
My book, we’re making progress as I’ve had someone look at it, edit it, make suggestions.
The process got stalled by my hospital visits but in May I’ll re-look at it again
with my brother and then maybe send it back for another edit, after which we would
need to look at type setting and maybe looking for publishers if we don’t do it ourselves.
So its moving on but it may be a year, 18 months or more before it comes to fruition.
Oh, I also have another new carer, Cheeryn. She’s got lots of care experience which
is a plus. She started in March,I just hope she didn’t take my hospital visits as
a personal thing, they weren’t aimed at getting away from her, I truly was ill.
Those photographs were taken when I was up in my chair watching videos of me, Steve
and Marcus, doing this makes a nice change from being in bed all the time.
I will finish this update by saying thank you to Steve for allowing me to be part
of his life for 21 years, it wasn’t nearly long enough, but then again 41 years wouldn’t
have been. I’ll love you forever My Husband, My Sweetheart, My Love.