This
is a long post, I'm afraid.
So,
I've been ill. Two Wednesdays ago, I had quite epic D and V followed by
generalised stomach pains. I saw a GP registrar on Thursday about
getting some repeat meds and mentioned the D&V, nausea, and that
the pain had moved to my right lower side. He just mumbled about
seeing how it went. By Thursday evening, I was in agony and crying,
in between taking codeine and paracetamol. By Friday, it was hard to
walk and coming back from the cornershop I had to stop and was
doubled over in pain. So, succumbed to my health anxiety and called
NHS Direct. They called an ambulance.
I
was taken through to the Red Zone of A&E, had blood taken, and
had a cannula placed quite violently in my arm. They prodded my
stomach and said they'd refer me to surgery for suspected
appendicitis. But I didn't mind too much, because they gave me IV
morphine.
Wow.
Everything
became soft and gentle, and I remember my thoughts being pink. Every
sound coming from Resus sounded far away and I remember smiling and
having no pain at all. I didn't care what was wrong with me at all.
Four
hours later, I was wheeled up to the Surgical Assessment Unit. A nice
nurse chatted to me and I was quite upset and scared and was pulling
my hair out. I was given codeine and my diazepam. I didn't sleep well
as a Healthcare Assistant kept hiding in the bay I was in to use her
mobile. She was obviously not meant to do this, as she kept hiding
her phone when other staff came near. Myself and another patient
gaped at her. I filmed it on my phone. I was on Nil By Mouth until
10pm when I saw a junior doctor who said I'd probably just pulled my
muscles from the D&V. Then I got toast. Then I was told from 4am
I'd be Nil By Mouth again for an ultrasound the next day.
Saturday,
my back seemed to lock up and I had trouble walking and it was very
tender to touch. When breakfast arrived, the new nurse in charge (who
looked very happily stupid) said I could eat. I had a little bit of
cereal and then a doctor appeared who said I should be Nil By Mouth.
I yelled at the nurse as it would delay my scan. She said it would
happen later in the morning. Dinnertime it hadn't and I wasn't
allowed to eat or have anything more than sips of water. I felt
awful. By night, I was told my scan had been cancelled so I could
eat. But I could only manage a little bit. I was angry that plans
were being changed and no one was keeping me up to date. I screamed
when the nurse 'reassuringly' patted my arm and I yanked out more
hair. She backed away and then started burbling about an injection
everyone had to have to stop blood clots. I was already upset and I
couldn't understand. I went outside and came back and lay on the bed
with my hood over my face. I'd bought a £10 Big Bundle TV card, good
for 24 hours, and vaguely remember watching Meet
The Goldbergs,
The Big Bang
Theory, and
Big Hero 6.
The nurse came back, gave me another codeine and left. Later, I went
into agony and was given OraMorph. The night nurse discovered that my
cannula was bent where it had been put in and it later just fell out
of my vein. Now have a nice painful lump there.
Sunday,
I was screaming the ward down for morphine. I had an ultrasound.
There was no female chaperone. I didn't like this, but the porter for
radiography was very nice and actually made me laugh, which was a
real boost.
But
then the surgeon came with the results. Not serious news, but unknown
to me. Ovarian cysts. He was very cavalier about it, said no point in
operating and spoke very quickly. I asked him to slow down or write
it down as I have problems processing verbal information quickly. He
wouldn't. I asked about fertility and he just shrugged and said I
should ask a gynaecologist.
I
limped off the ward in tears and phoned Mum. I was terrified. I
didn't know how they could be sure the cysts were benign, if I meant
I could have children. I shouted that if he'd been told there was a
lump in his bollocks he'd be pretty scared. She calmed me down and
told me to get the nurse (nicer than Saturday's) to slowly explain to
me. The nurse did and told me to stop pulling out my hair. She gave
me printed information on cysts and calmed me down. I messaged female
friends and turned out a few of them had had them and said it was
common, had had some pain when they 'burst' and had had problems
conceiving, but that had conceived.
I
had morphine and slept for an hour and then felt happy and trippy and
read and wrote quietly. With just enough internet signal and a
morphine high I ended up ordering kawaii handmade jewellery on
etsy.com for a few hours and enjoyed re-reading Donna Tartt's The
Secret History.
I appear to have ordered a custom junk food charm bracelet, a Chuck
Palahniuk quote engraved aluminium wrist band, a “Valar Morghulis”
necklace, some skateboard stickers for my Kindle, and Harry Potter
necklace for my friend's birthday. I think.
At
about 3am after seeing a nice junior doctor, who said the surgeon
hadn't been professional with me. The new ward staff were nice and
treated me with kid gloves. I finally went to sleep around 4am after
they gave me morphine to induce sleep.
Monday,
I woke up with the worst migraine I'd had in a year. I screamed for
morphine for an hour and half, but there was only one qualified nurse
on the ward. Mum called in the middle and she was furious so called
the ward to complain and explain my problems. Finally I got morphine
and Imigran and fell asleep. Getting the Imigran was difficult. They
knew it was with me and locked up by my bed, but I was wasn't written
up for it. The nurse showed me the chart and I said I knew all that
and that because it was mine I was allowed to self-administer. She
said that was right. I asked then why didn't she just get the keys
and let me do that? She sighed and did so.
Woke up and then needed
more morphine. Had to lie with a t-shirt over my eyes and a cold can
of Coke on my head. Yelled at a healthcare assistant who came to make
a bed and left a radio on. A surgeon came to see me and said I needed
a CT scan as the back pain could be kidney problems. He told the
staff to draw all the curtains and turn off as many lights as
possible, which I appreciated.
I
was injected with a dye, which made my insides feel very very hot.
Then my stomach was scanned. When I sat up, I threw up 800ml of water
and orange juice. This actually helped my migraine a lot. By now I
was written up for regular morphine and looking at my chart, had had
it increased from 5ml to 10ml to 20ml every four hours. I slept well
that night.
On
Tuesday, I was told my CT scan was normal, but my right leg was
puffing up as I'd been dragging it due to back pain. I was given
another blood clot injection and told to bend my leg more. A junior
doctor checked my legs and back and said there was no point referring
me to orthopaedics as it would take awhile. So, I was to be
discharged with lots of painkillers, see how I went over the next
week and see my GP to discuss a gynaecological consult and
physiotherapy. Then we had this awkward conversation:
Me:
Umm, before I came in I was having...pain...during...sex. So, with this
cyst how long should I, umm, wait?
Him:
Well, I'd ease into it, if I was you...
Me
and Him: [sniggers]
Him:
But, no, you're not going to do any damage if you have intercourse
so, you know, just, umm, when you're ready [smacks fist into palm] go
for it.
Me:
[laughs my head off]
The
nurse in charge was so nice and friendly that day and it made me
happier. But she was furious when the junior doctor disappeared for
four hours and didn't answer the phone to sort out my discharge. She
said for me to go outside to calm down so I wouldn't yank out my
hair.
A
strange thing happened. The nurse told me that as I had run out of
cigarettes, to take 10p out with me to see if I could buy one off
someone. The man I saw wouldn't take my money, but rolled me a
cigarette and then rolled another without asking and said I'd
probably want it later. I was genuinely touched. Then a man he knew
came outside. This man's partner had just given birth to twins. The
man who rolled my cigarettes, his wife was in surgery for breast
cancer. The new father had no idea. There was a strange moment,
opposite ends of the spectrum of life. I left them to it.
When
I got back upstairs, the Ward Sister had chased down the doctors and
had my paperwork and meds ready. The lovely nurse gave me a hug,
which I didn't mind too much, and I gave her some chocolate. The
Boyfriend picked me up and couldn't stop kissing and hugging me. We
went to his Mum's and his brother and his girlfriend were there and
it was nice to see people I knew and enjoy my trippy morphine high
around friends.
Later,
The Boyfriend was what we call 'goo-goo' and followed me around and
kept cuddling me. We'd really missed each other. I felt
overwhelmingly happy to be home. The Boyfriend had gotten me a pretty
'festival-esque' watch, which looks great.
Today,
I am trying to move around more and ignore my health anxiety about my
right calf being a bit swollen. It must be from lying around for so
long. The morphine makes my pain all but disappear and make me at
first tired and then strangely creative.
What
I have learnt from this is that hospital staff, for the most part,
know what autism is, but don't know how to communicate with someone
who is high-functioning. They don't know they should keep someone up
to date, even if there's no new news, inform about changed plans, and
don't touch without asking. And always give written info. I have
contacted NAS and will fill in a “Hospital Passport” form that
would explain my needs should I need to go to hospital again.
So,
stressful, lost a fair amount of hair, and in slightly less pain than
what I went in with. But, just happy to be home and around familiar
things.
What is quite horrible is that I know that when I have a meltdown, I must look as though I am twelve and throwing a tantrum. In my world, my head, it feels like a change in my routine = end of the world, everything is destroyed and I have no idea what comes next. It is so out of proportionate, yet it is very characteristic of this brain thing. What I really want to learn is how to 'shut down' quick enough so that these incidents can stop happening. It's embarrassing.