Sunday 20 November 2011


This morning was rough.  I woke up feeling very breathless and bloated.  The NIV (non-invasive ventilation) I wear at night helps, but I swallow a lot of the air when I relax.  It makes me wake up every few hours and I burp and fart it all out!  This morning it just didn't seem to want to budge - something was pushing on my diaphragm.

I'll be honest, I was scared.  I didn't know how long this breathlessness was going to last.  I didn't know exactly why I was so breathless or what to do.  I just sat there on the NIV thinking, I've had enough of this.  I can't take much more.  My body is exhausted and now I'm exhausted.  I felt like I'd given up.  I just wanted to sleep and everyone to leave me alone.

The physio came at about 10.30am and I was sitting there struggling to breathe.  She helped keep me calm, did some relaxation techniques.  She then did some percussion on my back while I leaned forward, breathing on the NIV.  It was really hard, but I managed to start doing my usual AD (autogenic drainage) physio.  You basically have to use your stomach muscles to squeeze down on the breath out and the mucus makes crackly bubbly noises.  Then you gradually breathe higher and higher, bringing the mucus up till you can cough it out with as little effort as possible.  It's very tiring and with all the breathlessness, I'm surprised I managed to do it.

I tried to rest, but kept getting more wind from the NIV and having to sit up and burp it out.  I sat up and was suddenly sick everywhere.  It was all undigested feed from last night.  I didn't understand that because I'd taken extra enzymes but it just decided to come back up.  I felt a bit better after that, but still exhausted.

Mum and Dad then arrived and I was well and truly running on empty.  Mum helped me to the toilet and I rested for an hour, writing things on paper if I wanted to say something.  I started sipping Dr Pepper, then Dad bought me some tomato soup.  I came off the NIV and ate it and managed to stay off it since.  Just on my usual 4l of oxygen now.  The physio came back and we did more physio with the Vest.  It's like a life jacket that you wear and attach tubes to.  It then inflates and pumps air really fast to vibrate your chest.  It worked well and now I'm pretty much back to normal breathing!  I'm scared of waking up now though all breathless again.  Take each day as it comes I guess...

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