I am still not well. I have brain fog from the steroids and the consultant has agreed now that my psychosis was caused by the high dosage of steroids.but they were necessary. My liver is better, but I don’t feel well. The idea is to taper off the steroids and then go onto an immunosuppressant. I’ve done this and then felt very ill. I’m currently waiting to see an Endocrinologist as my consultant thinks my adrenal glands may have given up making steroids. I’m back on them and my asthma is bad, I suffer from very painful headaches and extreme fatigue. I had never heard of AIH until I was diagnosed with it. It affects sufferers in slightly different ways. Many of us have other autoimmune diseases too. It is not widely known because it is rare. 1 in 10,000 in the UK and 1 in 100,000 in the USA. Occasionally it burns itself out, but it’s more likely that I shall have it for the rest of my life. People don’t understand and say you look well. It’s time people did understand.
My husband won’t tell me about my strange behaviour when I had psychosis, but I remember some of it. I kept saying the knives the knives take away the knives. Also threatening to leave my inhaler at home whilst being taken to the hospital so that I could have an asthma attack and die.
To begin with I was watched every minute of the day for my own and others safety. The two charge nurses were very kind, but not all the nurses were so kind. I guess I’d been refusing to shower. Sometimes healthcare assistants would shower or wash me, but one nurse dragged me with help onto a very hard plastic chair, it was agony I was very bony she left me with my arms covered in bruises. I could hardly walk and needed to hold onto the rails. Not everyone believed me.
It was peculiar the nurses behind the nurse station would ignore you. I thought it was all part of the treatment making us more self reliant. At times it all seemed like a game. It felt like some of the inmates were actors. I tried hard to ” behave myself” the section was lifted only to be slapped on me again. I thought that I would see a lot of the psychiatrist but it wasn’t like that. I had an opportunity to talk to a senior nurse at the beginning I took up far too much of her time by going on and on about my mother’s toxic behaviour even though we had buried her a month earlier. The nurse said we know all about this tell me about your husband. Part of my psychosis was that I thought he was trying to kill me. This wasn’t help by the fact that I got sepsis and had to go to the medical hospital. I was delirious and had to have antibiotics. This happened to me twice whilst I was in the mental hospital. I did have bruises on my body from where I had fallen in the hospital where they thought I’d thrown myself on the floor and from where I thought my husband had thrown me. I now don’t believe that’s true. Photos were taken of my bruises.
It seems that the therapy was conducted mainly through the occupational therapy and self realisation. With the psychosis some weird things happened to me. I believed time was going backwards, that my watch had been tampered with, that daylight was lasting 24 hours, that I didn’t have a room, that I was being punished along with some innocent inmates one of whom I’d befriended,that a male nurse agreed I was being punished. Eventually all this receded. Once I was put on 40 mg of Prednisolone I felt more normal and I felt quite well, but I still wasn’t eating much. I began to wake up. Apparently I hadn’t noticed the occupational therapist trying to interest me in things to do. I started to join in with all the creative things, walks (even though I could just about manage) knitting with bamboo needles because I was afraid I might injure myself on purpose, and relaxation. They had a garden there which I loved. It was a bit neglected, but I would get out there and dead head the roses delighting in the fact that the bushes produced more buds. I made friends with some lovely people.
Night times were horrible. I generally couldn’t sleep until about 3 in the morning and breakfast was at 8. I would get restless and then a nurse would rush into my room to say I was setting the alarms off and I would have to have an injection if I didn’t take my evening medicine. I didn’t want sleeping tablets because I was afraid I might not wake up again. I lived in dread of a certain male senior nurse being in charge of meds at night because he would shout at me if I didn’t take them. I now know one was a tablet to control the psychosis so I suppose I can’t blame him.
Once I discovered the occupational therapist I would spend my days waiting for her as most of the activities I liked were in the afternoon. I had some colouring books and pencils my husband had left me which I sometimes remembered to bring out of my room. I wasn’t allowed to go back to my room on my own. I took to leaving my colouring books in the dining room with the rest of the colouring sheets provided by the ward. My pencils went missing I used the ones in the ward they often needed sharpening. Because I wasn’t sleeping I started showering myself in the cubicle in my room drying myself on the one small towel provided and a nightie that wasn’t actually mine then going to the dining area. First they said I was too early and would take me back. I continued and would say I’ll be very quiet and get on with my colouring. Then as the nurses for the next shift came in I would be kindly brought a cup of tea.
One of the things I found really hard was not being allowed to carry an inhaler with me and having to ask for it. Luckily with the high dosage of steroid my asthma wasn’t as bad as usual. I always received my steroid inhaler at medicine times. I was allowed to have a reliever but I left it in one of the bathrooms and someone stole it. I think I know who, but I didn’t say because i believe it was a lady who subsequently ran away. She must have been helped. I contemplated running away myself, but where would I go to? We were locked in, but at least one other patient was forever getting out of the ward when the next shift of nurses entered.
I tried to behave was polite to everyone praised the staff in the kitchen and the cleaners. They did deserve it, but I thought it would help me get out. I didn’t know to where I told the social worker that I had no where to go. One of the nurses had a husband who was a policeman and assured me my allegations would be investigated. After a while she said are you ready to see you husband I said no! Some more time elapsed and she asked again this time I said yes I missed him and I realised that the police found nothing. It had been part of my psychosis. I wanted to go home. Sometimes I would cry at night, I was exhausted with all the activities and waiting sometimes until 11 at night for the medicines which I was now taking. Things were confusing I was advised not to take the sleeping tablet as it’s effect had now worn off in fact it wore off after about three nights use! I didn’t take the advise straight away.
I tried to rush getting better. I wanted to go home, but I was still ill. My family kept telling me to slow down. I wrote to the patient liaison society several times to say I was being held prisoner and needed an explanation of psychosis and the treatment and finally saying I needed help because I had a serious food eating disorder. I had realised and it was probably something I’d had for a longtime and it was something that manifested itself in more and more so called allergies. I do have some, but not the number I thought.
I had made my own realisation and started to eat more. It was hard very hard because my stomach had shrunk. I put on weight and felt better. I kept telling them that I never weighed more than about 51kg, but of course how were they to know? I had some home visits, an OTC came with me to check I could manage and it was agreed that I would be better off at home with my husband. All along of course this was the aim which was written into the plan of action for me and in fact I found out that apart from when I was sectioned I could have left at anytime!
I’m at home now, but things continue to be difficult… I don’t know whether I will ever feel really physically well again.
I was in hospital again. I had my birthday in hospital my son came to visit me with his dad and brought balloons. A young patient said why was I allowed balloons. I like to think I was helpful to the other patients ringing the buzzer when needed and so on. But apparently at night I was a different character…… this is where things start getting confused in my mind.
They still didn’t know what was wrong with me. I had a liver biopsy it was absolute agony. Probably because I was skin and bone. I suffered a vasovegal incident this is where your blood pressure drops I had to go to the recovery room. The Gastroenterologist at the hospital diagnosed AIH. It knocked me for six this was even though it was explained to me that the alternative was cancer and I would already be dead. I was prescribed 60mg of Prednisolone a day to get the inflammation down and then Azathioprine which among other is an immunosuppressant. Basically it would prevent my body damaging my liver.
At some stage I was put in a room on my own where I had hallucinations. My husband stayed with me and it frightened him. I thought that I was admitted to a mental hospital from that hospital stay but that was not the case. It was from home. Apparently I had been acting strange. My husband called the out of hours doctor who thought I should go to hospital. I was refusing and was tied to a frame and carried downstairs to the ambulance. The ambulance men were joking about how they would sue if I lamped them one! My husband came too and I said I might lamp him! This just amused him. I was taken to an emergency ward where I thought I was being helpful. Apparently I was screaming and shouting at night. This may seem jumbled, it is as it is jumbled in my mind.
There was a meeting which included my husband and two daughters. There a psychiatrist shouted at me in a horrible way and told me all the things I’d done. She said I’d got psychosis I shouted no! She then smiled. From there I was taken to the nearby mental hospital where I was sectioned for 28 days.
I had two more ultrasound scans. One showed some cysts which apparently are not unusual. A GP said I had a fatty liver which upset me. I had an MRI scan and then saw a surgeon because they thought I had had a gallstone pass through the bile duct and there could be more. I had several hospital appointments and was getting weaker and weaker requiring a wheelchair when I got to the hospital. I wasn’t eating and was under the care of a dietitian who prescribed food supplements for me, but I was losing weight and was seriously underweight. The surgeon and anaesthetists hummed and har d about removing my gallbladder given my physical condition and my chronic asthma. They decided against removal. I had an ERCP this is where they lay you on your stomach a put something similar down your your throat to a gastroscope but it has tools on the end which cut slits in your bile duct to hopefully aid the passage of stones and biliary sludge. At some stage I had another gastroscope which showed a hiatus hernia and erosion in my stomach caused by the beginnings of stomach ulcers, but I didn’t have helicobacter pylori which can cause stomach ulcers. I was prescribed Omeprazole which is a proton pump inhibitor. Basically it tackles acid reflux which can also cause stomach ulcers. Confusion was about to set in….
My liver function tests were all over the place. I was being seen at the local hospital by a Gastroenterologist who thought my problem was mainly anxiety! I was anxious and had panic attacks for years and would shake a lot. Along with the differences in liver function tests my jaundice would improve or get worse again. I went to A&E twice only to be sent home. Then my liver function tests went up wildly and stayed there. I saw the Gastroenterologist and she had me admitted to hospital. My eyes were yellow too. There was no bed for me apart from in a surgery pre-admission ward where I was treated very badly. I felt very ill but strangely had little pain. The charge nurse wanted me to take paracetamol but I didn’t want it. I was afraid that I had already poisoned myself with it. I wasn’t sure but I thought maybe I had taken a bit more than I should. I was given oramorph which zonked me out. At least I could escape where I was for a while in sleep. I was expected to wash myself most of the time or shower by myself. I could hardly stand and thought I might collapse. One very kind nurse would walk me down to the toilet in the morning as I shook. My gums bled profusely and I would look in the mirror and scare myself. I had stopped taking my antidepressant because I thought it had made me jaundiced. I was to have the most horrendous withdrawal symptoms. The noise from visitors seemed to get dimmer then louder and the banging of doors and lockers would make me jump.
Eventually I was moved to a geriatric ward. Fewer people but very scary and very ill people. Opposite me was a poor lady with dementia. She had at one time been a very beautiful woman, but something very wrong had happened in her life. She would scream at the male nurses. She wouldn’t even let them take her blood pressure. She took a shine to me and wanted me to come over and talk to her. She didn’t realise that I was so ill I could hardly stand. After a few days they moved me to another geriatric ward. I had to witness and hear elderly and not so elderly people scared and dying of cancer. The withdrawal symptoms were worse I’d wake up in the morning seeing double.
I was told I would be having a gastroscope. I would psyche myself up. It was put off and put off. Eventually it was done by a doctor with a very shaky hand which was a worry but proved to be better than a subsequent gastroscope. I was then discharged. I was still very ill. My poor husband thought I was better I was not. Worse was to come.
The doctor came to see me at home I had been sick in bed it was all water as I had been drinking loads. I couldn’t eat and was having about two spoonfuls of soup and leaving the rest. I was passing dark brown urine so I went to see the GP she sent me for an ultrasound it was agony. The results would not be sent to the surgery for a week so I saw another doctor who felt my liver and said it was enlarged. I was more or less teetotal and I certainly am now. He sent me to hospital and the first question I was asked was had I got a will. My poor husband looked scared to death I just kept on cracking jokes. They tested me for everything under the sun including HIV. They said the jaundice could be caused by a virus or illnesses I had had even as a child. I was then sent home and told to come back in I think it was two weeks time. It’s a bit hazy so much has happened and there’s another reason why I’m not sure of the order of things which I shall explain later. When I went back they said they didn’t know what was wrong all the tests were negative.