This is the twenty-first part of a guest serial, in 652 words.
Mums’ friend, the one who arranged for Merlin to come and see me, visited me and stayed with me for a while. She was the closest thing I could get to having Mum there with me, and I’m grateful for her visit. She was writing on my whiteboard, telling me of her recent trip, with her son, to China (I think it was China). I remember Las Vegas and riding in a helicopter being mentioned, I can’t remember how they got into the conversation.
Her hugs were what I needed. They were comforting and reassuring, and they meant so much to me.
The next day, I was transferred into the recliner, and this was the first time I used a hoist. It felt really weird to be swinging there (not like on a swing at a park). I don’t like being off the ground anyway, so it was a bit nerve-wracking!
From where I had been lying in bed for weeks, even though I was supported with lots of pillows, sitting in the recliner made me very sore. I could only manage about 15 minutes before I started crying and wincing in pain. Before they tried to transfer me back into bed, a group of people approached me. A tall man knelt down in front of me and began writing on my whiteboard, “I have been asked to see you, to explain about Mitochondrial” I nodded, then mouthed (several times), “All I’ve been told is that its genetic”. The bloke nodded.
With everything that had happened throughout the past year, I felt like my time was limited and if Mitochondrial was the cause of it all, and with how quickly my health deteriorated, I assumed it was just going to get worse and worse.
“Am I dying?”, I mouthed. I started crying, dreading his answer. “No”, he reassured me, shaking his head.
As much as I wanted to know more, at that moment I only had one question to ask, and it was answered. I just needed reassurance.
The following morning, when it was handover, I met Will. He was absolutely beautiful, not that I liked him in that way, but you know when some men are just beautiful. He was. Anyway, he was an incredible guy and one of the best nurses that had looked after me.
I had done really well with being off the ventilator, I can’t remember how many hours I had managed but it was steadily improving.
That night, Ewan stayed a bit later after visiting hours. That was the night the nurse had to change my NG tube. I wasn’t awake when they put the first one in, so I had no idea what it felt like. I think the nurse’s name was Dan, he was lovely. When Ewan explained to me that Dan had to change the tube, I just laid there shaking my head. Nope. Not having it.
But I had to.
To my surprise, when the NG tube was removed, it wasn’t painful, it felt satisfyingly weird! But then the dreaded moment came when Dan tried to put the new one in. He explained to Ewan what I needed to do, then Ewan repeated to me, “When Dan puts the tube up your nose, he will tell you to swallow so the tube can go down into your stomach”. Mental images did not help at this moment but thanks to my brain, they sure appeared in my head!
The first attempt, I struggled to allow the tube to make its way up through my nose, more like my brain was telling it to go back where it came from, it wasn’t exactly painful, it was really uncomfortable.
The second attempt, the same again. Third time lucky and I was brave! It finally went in, hooray.
I hope I never have to relive that again.