Patient Stories

Hi, I’m Amanda and I’m a wife and a mum to 3 boys. I was born with muscular dystrophy (MD), a degenerative condition that weakens muscles over time. I’ve had 2 admissions to Intensive Care; firstly for 3 months with sepsis, and secondly for over 6 months due to anaemia. Both times MD complicated my admissions, and I was ventilated and had a tracheostomy to assist weaning from the ventilator.

Being in Intensive Care has been a big part of my life over the last 5 years. One of the biggest issues I had was experiencing severe delirium, hallucinations, and nightmares during my first stay in ICU. I did suffer with delirium on my second admission, but not to the same extent. On my first admission I vividly remember being moved into a side room, and thought I was having my feet chopped off. In reality, the nurses were bandaging my legs to prevent swelling. On a lighter note; I sent my Husband out of ICU about half a dozen times with wasps that had appeared on me. He had to walk around the unit and pretend he had taken them outside, and each time on his return I had found another one for him.

I am in quite a unique position to have been in ICU for 2 long periods, and have seen a change in how my delirium was dealt with. On my first time, it was a case that what I was experiencing was to be expected, but I had no robust support or advice when I left. On my second time in ICU I had similar experiences, but I felt that there was a better focus on emotional support and making sure I understood what had been happening and why. The staff and my family kept a diary for me during my second stay in ICU, and this has really helped me to process what happened; even now I read through this at times.

Another aspect of my experience was realising on my second admission that, due to my MD, I would not be able to wean off the ventilator and would have to go home with a tracheostomy and 24-hour ventilation. Once I was set up on the ventilator I was going home on, I was able to start taking trips out of the unit. Initially it was with 3 members of staff and what seemed like half a tonne of equipment, including a rickety trolley that bumped my ventilator every time we went over the paving slabs. Over the weeks, whilst I was waiting for care and equipment to be organised so I could go home, we gradually improved the process so that I was able to go out with my family and just 1 nurse, and most of my equipment fitted onto my wheelchair. These trips increased from going around the unit to then going to the on-site supermarket and canteen. I went from feeling secure in the bubble that was ICU to being around strangers that would take a second look and not understand my tracheostomy and why I was wheelchair bound. At first, I felt very self-conscious and tried to cover up my tracheostomy, sometimes using a scarf, but I have now become used to it all. Most days I love going out and about with my family- trips to the seaside, zoo, and theatre, and just enjoying life. I still have days when I feel frustrated and self-conscious, but who doesn’t! Without the nurses and physios taking extra time to make these trips possible, I would have struggled with getting back to normality so I’m really grateful for this.