Encephalitis – My Brain and Medicine 2019 – Sue’s Story
Hello everybody, my name is Sue Overton
and I’ve been invited to tell you about my lived experience – so that’s what I’m
going to spend a couple of minutes talking about.
2 years ago, to the day, was the day that I contracted shingles and it got up to mischief.
And so – at this stage I’m a bit ahead of myself, so maybe if I tell you about the build-up to it
first, and who I was before and who I am now.
So if we look at my starting point: here I am look, this is me – a lady of a certain age
who used to enjoy travelling extensively. I think the other thing that you might
like to look at is I was an aid worker. So I worked in third-world countries:
this is me in Malawi, I was helping to project manage a Children’s Centre.
The most important thing for me was that I was physically very fit, even though I was
getting on in age – it’s not the most flattering photograph I have to say, but
when you’re outside and offshoring your yacht – you think that makeup with hair is
not that important. But Brian and I had sailed 3,000 miles offshore just the
2 of us, so that gives you some idea of how fit I was at that time.
This photo shows you what we were doing just before I was ill: we ran a very small
film studio, and I had a staff of 10. This is the lovely Brian in the blue shirt
that’s my partner and husband. And we’d been working for 18 months – we took the photo
just as I was about to say “it’s a wrap!” And so we were really looking forward to
our holiday to Barcelona. What’s important to know is that just before I
was going away I started to feel a little bit off-colour. Sort of flue-y, really.
And I wasn’t too sure – I’d got pain in my it back, and pain in my leg
and I thought “no, I’m not one to give in so it really doesn’t matter –
it’s my holiday and we’re going, and what’s more we’re going to enjoy it!”
So off we went. If anybody’s familiar with Barcelona
you’ll identify with me when I say we walked miles, and miles, and miles – and it
took two days before the spots came out. And so I looked at it, and I thought “do you
know, that looks a little bit like shingles.” And then I thought “do you know what
it’s gonna be nasty, but it won’t kill you.” That came back to haunt me a few days later, because it very nearly did.
By day three I’d got the mother of all headaches, and actually I couldn’t stand the
glare in the sun, and I didn’t like noise. And this photo here, is the last
photograph that we took before we realised it was starting to get serious,
and maybe we’d better get home. So, somehow the lovely Brian managed to get
me on a plane, and get me home, but just prior to that he’d spoken to a friend of
mine who’s a GP and explained about my bizarre behaviour. And she said “you need
to go back, and you need to go straight to the GP, and if you can’t get in go straight
to hospital. What we didn’t know at that time, but we now know I was I had
meningoencephalitis. As you explained – “both bits were getting it.”
They say that the worst time to be in hospital is on a weekend or a bank holiday.
And my stay extended over 5 weekends and 3 bank holidays.
So it was a complex time. The emergency team chucked
everything at me: I have to say I was on a drip, I was given intravenous
antibiotics, and intravenous acyclovir. And I know that if it’s not part of
the solution, then it’s going to be part of the problem. And for me it was because
I was allergic to both of those intravenous treatments.
So add on to that this complex situation: what I was presenting to the doctors was one minute,
here I am in my pretty dress, with my with my pearls and a suntan,
blonde hair and a big smile. “I’m not ill I’m fine, and I’m going to get dressed!” –
I’m very strong-willed. And then the next minute I’m out with the fairies, literally.
And so I’m told when I’m out with the fairies, that I was
singing at the top of my voice, behaving like a 3 year-old.
I want to say, at this stage, the saying “the relative takes the strain, while the patient takes
the pain” – and I can honestly say that I think Brian got the rough end of the stick, he really got a raw deal. It’s a complex matrix: so you’ve got me here,
swinging on a pendulum, between these two different behaviours, we’ve got a skeleton
staff in the hospital that was run predominantly by junior doctors.
Recently there’s been an article published, and forgive me if I’ve got this wrong, but I
think it’s the British Journal of Hospital Medicine – thank you Ava – and
that was put together by Dr. Ava, Dr. Marta, and Dr. Benedict.
The 3 of them have talked about how it is for junior doctors. You need to read it – because it’s
easy for us to turn around and say “we got a rough deal” but if you look at the
other side of the coin I think it’s very difficult too.
So we’ve got me with the skeleton staff, I’m in isolation so out of sight and out of mind,
and I think the third thing was I’m swinging backwards and forwards.
I think to say at this stage – thank god for the frock and the pearls – because I think it
very nearly saved my life. Very early on a junior doctor came and saw me like
this and said “no, no it’s all right – meningitis – let’s get her on tablets,
let’s get her home.” They took me off the acyclovir intravenously, and put me on
to tablets, which I could tolerate much better.
What I do you need to tell you is I’m a veteran of 4 lumbar punctures – yeah 4!
Okay so that needle, I can tell you it’s much bigger than that!
The first one was a junior doctor who had never done one before – okay – never done one before!
So here I was, I was his guinea pig, and all I’m gonna say to you is – ouch! – and it didn’t work.
The second one came from the senior consultant, and he done many more so actually this one did work.
I’m going to tell you the shingles were giving
everybody a big fat clue as to what the virus was.
So they actually sent, in a little van, my sample away to find out how ill I was really, how prolific the virus was and the severity. 4 days later I’m here again, back in my party frock, bouncing around.
I’ve got to tell you I can barely stand up,
and barely string a sentence together, but I looked okay, and
the doctor had come along this time to say, it was acting doctor, and he said
“ok, you should go home.”
At that point the junior doctor came in and said “we’ve had a
phone call from Manchester to say actually we’ve got the results of the
lumbar puncture: and the white blood cells are sky-high.”
So at that point they changed tack and said
“no you’re gonna be in for at least another 2 weeks.”
Now here’s the problem, because unfortunately the junior doctor didn’t
write it down. And we were on the bank holiday weekend
and so both the senior doctor and the junior doctor went away on holiday – and you
can imagine, if you’re in front of me, when I say the confusion continued.
The hallucinations were epic – I’m told you get drugs that make you behave like this –
I’m just thinking it might be worth it! But really, I had regression – so I am
back to being 3, and I can remember the detail intimately – the behaviour
was bizarre. Brian was so frustrated at this point,
because he was the only link that was seeing a constant picture. And it was
really important because he couldn’t get this message – because staff were coming
and going – so he recorded what was happening. Now I’m not going to submit you to me in 3 year-old bally mode, because I think that probably would be
too much, but what I will say it took 2 weeks for the senior neurologist to
arrive. And when he came from some sort of faraway land I recognised him because
I’d seen him 2 years before, and as he walked in apparently I said to him:
“I know you, I’ve seen you before and you were kind to me.”
Well quick as a flash, he turned around and he said to me, “now I know dear, you are delusionary.”
So he ordered lumbar puncture number 3. A few days later, finally all the results
were linked up, and the new results showed that the white blood cells
were still climbing, and I was now officially labelled “very poorly.”
2 things happened at that point, the first one I was no longer deemed to be
infectious – so the shingles were not a threat to anybody else, and I was put on
the main ward.
For my fellow encephalitis sufferers will know, that sensitive to
noise and light, the main ward is absolute hell on earth.
The second thing was they decided I had to have the intravenous acyclovir. I’ve got to tell
you that the allergic reaction was as immediate as it was violent
And it’s very scary being on the receiving end of a crash team.
But here I am, and I live, I tell the tale! So, let’s look what happened next.
Interestingly, and what might be useful to know, is there was a battle going on between the
microbiologists, who were office based, and never saw me, and the ward people.
They said it’s the encephalitis, it’s not the medicine. I knew because as soon
as it was going in, that’s when the fits and the seizures started. So the idea was
they were going to sedate me, so they’re going to give me big doses of Valium,
while pumping the acyclovir in. I declined – I said: “no you’re not.”
No matter how far out of it I was, I knew it wasn’t right for me.
And fortunately, the oral acyclovir I could tolerate, and it did the trick.
So around this time, about lumbar puncture number 4 I think, I was
trying to discharge myself from hospital, because I just couldn’t stand the stimulation,
and I’d resorted to sleeping on the floor of the visitors room to get
away from the noise and the sound. Let’s fast forward and let’s look at the fight
for recovery. I had one follow-up appointment – that’s all – with the
neurologist, and nothing else, and I soon was to discover that it was a
very different world, and I was a very different person.
The neurologist explained to me that my brain really was like a mobile phone battery – some of you
might identify with this – and actually the more you used it, the lower
the charge. So he’ said to me as long as I kept
using this, it would run down until eventually I would feel – his words – pants.
And he said emotionally, physically, and cognitively, so I won’t be able to think right. And he was right! You know the fatigue was crippling, I could barely
walk, and I was really struggling to speak and make sense of the world around me.
Coming to terms with that new world was very slow, and a very
challenging process. So here I am we decided six months after I had had E-day: encephalitis day, we were going walking with our friends, and I
couldn’t – I physically couldn’t do it, and that was a turning point for me,
because I had an almighty strop. I threw me teddy in, I shouted and raved at Brian
about the unfairness of the world, and about the unfairness of not being able
to do what I used to be able to do! And actually it was the turning point
because I knew I needed to start looking at things differently, you know it wasn’t
about what I couldn’t do – I had to look at what I could do. And it
wasn’t about looking backwards, it was more about looking forwards. And the
first thing, that day, was that I learned you don’t have to climb a mountain
to be able to get the best view! Now the other thing I recognised was I needed
some help, I needed some help to come to terms with this, and I thought to be able
to get some help from a neuropsychologist.
I’m gonna stand up here and say “yeah I had help from a neuropsychologist.”
There’s still a great big stigma attached to psychology – please, please, if
you’re out there and you need some help, ask for it. Because the cavalry came along in
the in the form of a neuropsychologist called Hannah, and she gave me a stark
choice: she said “stop trying so hard and then you’ll get better, or if you keep
trying you’re gonna get worse.” Because my answer was:
keep going, keep going, keep going, work hard, work hard, work hard. If I’d have broke my leg, you wouldn’t have put me on a treadmill and said “run!”
And your brain’s a bit like that, it just needs to rest.
So she helped for 12 months, nurture my inherent positive
mental attitude, but she tempered my enthusiasm. So let’s look at where we are
now: here I am! You know the business is closed, but the world’s not stopped.
I’m not capable of working yet, travel takes a lot of organising, I’m a bit like a
toddler getting ready to get off, and I’m very sensitive to noise and stimulation,
the fatigue still is crippling.
However I’ve been on telly – there we are, that’s me
with Paul Martin with my puppets. I’ve retrained, and I now work as a Cruse
Bereavement volunteer and I work with little tots, who have
lost somebody very special to them.
I’m good at listening – I also worked as a volunteer, I
still do, on the stroke ward at the York Hospital. Because it’s good to
remember how far you’ve come and it’s good to identify with people
who wake up, they can’t speak and they string a sentence together.
This is what I like best, I work with the homeless on a street kitchen in York.
It’s something that I get a tremendous amount of pleasure from, and
I’m very privileged to listen to other people’s stories, and the challenges that they’re facing.
So despite my Acquired Brain Injury, life’s exciting!
I’m privileged to share those stories and at the ripe old age of
58 I’m embarking on a 3 year MA course to train to be a play leader, a
play therapist, and a psychotherapist. So watch this space!
Now just to summarise, I know that this conference is called “My Brain and
Medicine,” and I know that there’s a section on the encephalitis website
called “My Brain and Me,” but I’d like to finish this slot, really by dedicating it,
and renaming it, “My brain and Us.” Because all of us, every single one of us in this audience and auditorium today have been touched by encephalitis in one way or
another. So, to the doctors that are out there, the researchers, clever people:
please, please, keep at it because you’re amazing and there’s still such a lot to do! To all the people at the Encephalitis Society: I wonder whether you
know just how valuable you are? Specifically, the safety net that you
provide, the awareness that you create, the funds that you raise, you are invaluable. – it’s the encephalitis –
To all the families, the friends, the carers, the supporters, with a special
shout out to the lovely Brian – thank you, from the bottom of our hearts.
Perhaps most importantly, really, to all veterans out there, who have got, or
have had encephalitis: you know you need to look forward not back, because it’s a
beautiful world, full of beautiful people and you know we’ve all got a lot to offer! Thank you.