Hospicable

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.