This is the twentieth part of a guest serial, in 700 words.
Tests for Mitochondrial Disease were ongoing, Mum had to have a blood test which would show, if anything, that I could have inherited. I just had to wait for someone else to be tested.
With being constantly hot and sweaty, I hated how my hair felt and looked. One afternoon, a nurse washed my hair and I genuinely felt like I was being pampered! Head massage and a thorough wash, it was lovely. I ended up falling asleep because the head massage was so nice. I could really do with another massage, especially my neck and shoulders.
Mum came to see me but I could tell she wasn’t feeling well, she was more tired than usual, and kept nodding off. I’d been struggling with being off the ventilator that day and I thought I was going downhill again. I was convinced I was dying again. The anxiety of it all made me really tired so I fell asleep not long before Mum had to leave. I panicked when I woke up later that night, realising Mum had gone and I didn’t get to say bye to her.
I was very upset and the nurse spent ages reassuring me that Mum did give me a hug before she left. After how I had been that day, and feeling really anxious, I convinced myself that I would never see Mum again.
The next day seemed to drag, I wondered where Mum was as it was nearly 6 in the evening. “Maybe she’s had enough of seeing me’, I thought, I felt really low again and had quite a lot of horrible thoughts in my head. It was hard not being able to talk, about how I felt, purely because I was still recovering and could not speak.
When a nurse came over to me, I mouthed, “Where’s Mum?” The nurse took a while to write on my whiteboard, “Your Mum isn’t able to come and see you today as she’s not very well, but she sends her love”. I was devastated. I wanted to be at home to help her, but I was also selfish and wanted her to be with me. Yes, I’m a mummy’s girl. It was my first night without any visitors and it scared me.
The next day, Mum had already phoned, before I woke up, to say that she wouldn’t be able to come and see me, but her friend had arranged for another support dog to come and visit me.
I managed 6 hours without the ventilator that day!
I met Merlin, the Labradoodle, in the afternoon. He was very soft and friendly. He even licked my nose, bless him!
Meeting Merlin did cheer me up for a while, but the man, who visited me during my first morning at Addenbrooke’s, the one who I didn’t have a clue as to what he was saying, came over to me with a group of people. He wrote on my whiteboard, “These are my students, do you mind if we examine you?” At this point, I just wanted all the examinations to stop. In the space of a few weeks, hundreds of different people had seen me, cleaned me, washed me, examined me. For someone who doesn’t like to be touched, I’d just had enough.
‘But how would that make me look if I refused a simple examination?’
I nodded and thankfully, it wasn’t invasive. It was a standard test where they bang that circle thing against your wrists, elbows and heels. Plus, the sharp end they run across the soles of your feet, they’re lucky they didn’t get a kick in the face because my pain threshold was still oversensitive!
After they left, I got very emotional. Nothing had been explained to me, I still didn’t know how I ended up in hospital. I still assumed I had a ‘bad chest infection’. It all just got to me and I wanted answers. It took me a long time to get the nurse to understand what I was saying, but she arranged for someone to come and see me to give me some answers.
Finally, hopefully within the next few days, I would know the truth.