Learning to Breathe Again: Part 2

This is the twelfth part in sharing my personal experience of battling with ill health.

Continuing on from Learning to Breathe Again: Part 1

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 Mitrochondrial” 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 Mitrochondrial 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 awesome 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 only things I am used to shoving up my nose is tissue when I have a cold.

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.

Jill came to visit me at the weekend, she always knows how to make me smile. She loved writing on my whiteboard, what made me laugh (well, silently) is that when she writes, you can see in her expression what she is writing, if she’s happy about something then she will smile or laugh while writing, or if she’s annoyed or being sarcastic then she writes really fast whilst pulling a face. Anybody who knows her will know what I mean.

There was this male nurse, and he just sat on the reception desk not doing anything. Anyway, the nurse who was looking after me asked if I wanted to be transferred into the recliner. I nodded, as I wanted to show Jill because all she had seen of me in the last few weeks was me lying in bed. I was safely transferred into the recliner, all for about five minutes as I became really sore and it was more painful than the last time. Back up in the hoist I went.

The male nurse, who was sitting on the desk, had control of the hoist, and the idiot looked elsewhere while I was being lowered back into bed which meant he didn’t stop the hoist from lowering further, which as a result, squashed my hand! I couldn’t scream as nobody would hear me. Thankfully the other nurse who was assisting noticed before it could completely crush my hand. That left a bloody bruise though.

I kept giving him the evils when he walked near me. I was not happy. Thankfully he left not long after.

Jill left a few times to get some fresh air. But the second time she came back in, there was something different, not about her but about me.

While she went out, a nurse came over and wrote on my whiteboard, “Shall we try you with a speaking valve?” I looked at her, hesitant. She knew what I meant from the expression on my face. “Don’t worry, it doesn’t hurt, it’s the same as changing your tracheostomy tube but with the speaking valve, you can try to speak, but you might cough a lot” she wrote down, reassuring me. I nodded.

The nurse was right, as soon as she connected the speaking valve, I couldn’t stop coughing. I really tried my hardest to stop myself from coughing so I could surprise Jill when she returned. But I was still coughing by the time she got back, thankfully she didn’t notice any different. As she sat down, she started looking in her bag.

“Hello” I said, huskier than Rod Stewart!

Jill looked at me in surprise and put her hands up as if to say, “What the??” I tried to reply with “They let me try the speaking valve” but I couldn’t manage all them words without choking. The nurse quickly rushed over and changed the valve back to the tube that was helping me breathe.

Talking, well saying a few words, really wore me out! Some random nurse came over to Jill and asked if I was Jill’s Mum! Cheeky sod! Bear in mind Jill is 7 years older than me – I thought, “Bloody hell, have I aged that much being stuck in here?!” Jill told me what was said, after laughing so much. Well, revenge is sweet, the nurse came back and asked if Jill was my Mum! Ha!

I hope that nurse doesn’t create family tree’s as a side jpb!

In the 6 hours that Jill had spent with me, she went through 3 whiteboard pens! 3!!

Ewan came to see me on the Sunday. I cried when he came to visit, I just yearned to be at home with him. He sat beside my bed and held my hand. He hadn’t heard me speak since the day before I was admitted to hospital, he must have enjoyed the peace and quiet. I was hoping, at some point during his visit, that I could try and speak to him. So, I was relieved when the nurse came over to ask if I wanted to try and speak to Ewan.

I’m not going to lie, while the nurse was changing my tube to the speaking valve, I had butterflies. I knew what I wanted to say.

Within seconds of the valve being connected, I was coughing. Once it had calmed down, I turned to Ewan, and said,

“I love you”

He put his hand over his mouth in shock and closed his eyes, blinking back tears. The nurse bought over some tissues and I just laid there in disbelief. I never thought he would cry because of hearing my voice. This was a turning point for me, it made me realise what the odds were against me, how ill I was, but most importantly, it reminded me that Ewan still loved me and still thinks a lot of me if hearing my voice made him emotional.

Finally, he said, “I love you too”. I still remember that moment like it was yesterday and it’s definitely one I’m not going to forget in a hurry.

A few hours later, Ewan found my iPad – I couldn’t believe I’d had it with me this whole time! Nearly 3 weeks without it, blimey that’s a world record for me! Anyway, he turned it on and tried to see if there was any WiFi, thankfully there was! He did ask if it was OK to use my iPad while in ICU and it was fine.

Ewan held the iPad as I didn’t have the strength to hold it, I really struggled to type even with one finger. This was going to be a long recovery, learning to write again, type, sit up, stand up or walk, it all overwhelmed me but I tried my best to fight back the tears. I tapped on my emails, in my 3 weeks of unforeseen absence, I had accumulated over 600 emails. Wow, and most of them were from Scope’s Online Community!

Side note: I joined Scope’s Online Community in early February, as I wanted to speak with others who, like myself, were struggling to come to terms with how their life dramatically changed due to illness. The community was a silver lining for me and within the few weeks of joining, I had made one or two good friends and I was asked to become one of their Online Community Champions (I will explain more about this role later on in my recovery story).

I dreaded to think how long it would take me to go through them all.

Even though I was still coughing a lot, I was slowly getting better, I was weaned off the ventilator more often. There was hope.

8 Comments

  1. I like to read your story just before I shut down my laptop and go to bed. at this time the tv is off and I am enjoying the quiet. Reading your account of what you have endured makes me lost for words but I want to write a comment. Hugs Ami and be proud of yourself. x

    Liked by 1 person

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