Tumultuous Times

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…And……..breathe…..  It’s been a difficult few months. My son has been in and out of hospital, culminating early on Boxing Day by his needing to be rushed to A&E, having difficulty breathing. I kind of knew we were building up to it, but when it happened, and because it happened so suddenly, it was horrible. He had been hiding how ill he was.

I spent the next few days utterly terrified that he was on his way out. If not right then then in a few months’ time. Angus had a gastrostomy tube fitted in December and this had not gone well. He’d been in pain and without access to the painkillers he really needed (as it turned out), so he stayed in bed a lot. Staying in bed a lot when you have cystic fibrosis is wrong, wrong, wrong. You simply cannot do that. You have to keep moving. So that your lungs keep moving. If the alveoli in your lungs are constantly moving it is much harder for a bacteria to take hold and unleash micro bacterial havoc.

I visited my son every day, sometimes twice a day. We watched the stats. How much oxygen was he taking in? Too little, he needed extra O2. What about heart rate? Far too high; signs of infection (and also lung damage). I cried when I wasn’t with him. He was so thin it was impossible to see how he could still be alive. I have watched one of my children get thinner and thinner, and then die, I railed at the universe that I might have to do it again. It seemed impossibly cruel.

And then. A miracle. Angus turned a corner. The antibiotics started working. The gastrostomy tube stopped being so painful. Food was being absorbed through it overnight. This in turn led to his appetite starting to return. I could see – physically see – in his face, that he was putting on weight.

Another miracle: Angus somehow (and I have no idea how this happened) managed to improve enough so that we could go on our pre-booked family holiday to Lanzarote. Medical supplies and permissions from airports were hastily arranged. We needed to take seven huge feeding bottles in our hand luggage; way, way over the normal liquid allowance but it was all ok because Angus had a note!

As a result of us all expecting not to be going and then going we had the best holiday ever. The sun shone, Angus ate, Sorcha and Matt played pool by the pool, Ian and I swam in the sea. My mother though – aargh – managed to fall over at the airport before we’d even picked up our hire car and spent the rest of the week looking like a victim of domestic abuse.

This tale of woe has meant that my weight has been up and down and all around the houses. But some interesting stats: I started this #walkingmyselfslim campaign at 94kgs. Exactly one year later on 4th January 2018 I was 76kgs. I’m bloody proud of that! I have now been 76kg for about 3 months though…

I am still in the overweight area of the BMI chart though so I really, really need to lose some more. So… I AM BACK! Let the walking re-commence!

Today’s walk was round Mylor and Pandora. We even woke up to a little bit of snow, unheard of in Cornwall. ‘Twas lovely.

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