Fortunately there was a bench there

Bench

The bench was in the small local shopping centre and my breathing was ‘about to give out’. I used the oximeter and the saturation of oxygen in my blood was below 50. Impossible, some would say… but not if you work in the Respiratory field. Still not good.

A little indigenous Australian woman sat on the other end of the bench and, when I could I gasped out a greeting. She was sitting checking a ‘scratchie’ – I don’t know what other people call them, but to us here in Western Australia that’s what they are. Tickets that have areas to be scratched off with a coin in the hope of winning a sum of money.

The woman was pleased, and said to me a few minutes later, “You brought me luck, I’ve won $20.00,” and went off happily to claim her money.

I sat on the bench waiting for my oxygen level to come up enough for me to be able to walk.

No ambulance for me; the hospitals are full of ‘flu victims. I doubt if there would be an ambulance available.

https://www.watoday.com.au/national/western-australia/emergency-department-staff-concerns-not-my-responsibility-wa-health-minister-20190314-p5149z.html

No, I waited until I could walk again.

My little shopping centre has more than one bench

To be honest, most times I go there, I travel from bench to bench. I’ve met many interesting people as I recovered my breath on one of them. Some people had back pain, others were breathless, but I have never sat beside another oxygen user.

(As I explain in my soon-to-be-released eBook, Living at the end of an Oxygen Tube, not everyone who has COPD or Heart Failure is prescribed oxygen.)

Click (or tap) the image if you want to read the page about it.

Why so bad today?

I can only assume it was the ash from the bushfires. (Strange time of year for them here, but the freeway south had to be closed for a time.)
https://www.perthnow.com.au/news/bushfires

Yesterday (Thursday) was very windy and I kept the doors open so that my oxygen concentrator had some fresh air. (To extract the nitrogen from.)

But I was in my study working on putting ‘Living at the end of an Oxygen Tube into a print template’… and that’s time-consuming. When I took a break in the afternoon to watch a quiz show I like, I noticed there was a film of dust on the table as I walked past. I had only cleaned it the day before.

When the quiz was over, I turned off the TV and my Support Worker arrived, complaining of the ash in the air.

The suburb where the fire was burning is a long way from where I live but that wind must have been driving the ash. Maxine had to wash the ash from the surfaces it had gathered on. It was sticky and did not want to be dusted off. I tried.

The filter for the concentrator had to be washed, but for the time until it dried – the house has been quiet. Just the puffing as I take a breath from the Portable one.

Well, it is time to do my next task, and I am posting this early because I am busy this weekend.

God bless you all… and may you find a bench to sit on when you need one.

Susan

Home Oxygen… the Beginning

Oxygen flow control

The technician who brought my home oxygen set it all up, set the flow rate on the machine and told me not to change it.

He handed me a cannula with nasal prongs on the end of a long green tube connected to the machine. The oxygen was flowing, but I really had no idea how to put the ‘headset’ on.

While I was working that out, he set up the ambulatory oxygen cylinder (for going out) and warned me not to touch the button to change the flow rate.

With what felt like an encyclopedia of information in a foreign language he had me sign a form, handed me a booklet and was gone.

My home oxygen therapy had begun

I had prongs in my nostrils, part of  a cannula attached to a long green tube that followed me wherever I went. That was only the beginning of the learning curve to living at the end of an oxygen tube.

It also had a habit of ‘catching’ itself on the strangest places and I would come to an abrupt halt when my nose jarred.

I felt like Manasseh in the Bible.

Manasseh with hook through his nose

So the LORD brought against them the military commanders of the king of Assyria, who captured Manasseh, put a hook in his nose, bound him with bronze shackles, and took him to Babylon.
2 Chronicles 33: 11 Berean Study Bible

(I was not bound by bronze shackles though.)

All the same I was ‘tethered’ – I could go no further than my tube allowed.

Yes, the oxygen was there to help me, and it did, and does… but I had no idea of the learning curve that would be required of me.

There is a trick to cooperating with an oxygen tube.

  • Have enough tube to reach all the places in your home you need to go normally, wind up the excess. The more that is out the more risk of tripping.
  • If you are not carrying something, wind up the tube as you go… and learn to be aware of where the tube is all the time.

When I wrote the earlier blog about living on oxygen, I didn’t know it, I was only at the start of the learning curve.

As well as things to frustrate a person with tubes up the nose 24/7 – especially when the tube catches and yanks my nose, there are things to laugh about too… and things to wonder about also.

(I wonder how long it took Manasseh to get used to the hook in his nose.) Just one of those funny wonderings a writer’s mind can wander along.

The learning curve

… Is both physical and psychological and your home will be invaded by equipment that will help you to breathe but can be difficult to get used to having around. Your days (and nights) of quiet are over. The oxygen concentrator is noisy – I read somewhere 40 to 50 decibels… and that is a constant background noise when using the oxygen.

oxygen concentrator and oxygen cyclinders

There is a great deal to adjust to, and to learn, but when you get used to trailing your tube around, you will start to notice the health benefits.

I would have liked to have talked to someone in the same position, but that is a little difficult unless you find out about a support group of people with similar conditions.  If you hear of such a group, go, even though it takes a lot of planning even for a short trip.

I mastered the steep part of the  learning curve, and am plodding through the smaller, daily, challenges.

Books on living with home oxygen

The only books I could find were written by doctors or other health professionals, but I did not want to know all the technical stuff, just what I could do and could not do. I wanted a book written by someone who had walked the journey before me.

Because I could find none, I wrote my own. I am publishing it for others like me, for the people who come to help, but have no training.

So many people have encouraged me to write this, and helped me with the project.

Connie, if you read this… thank you, it’s for you too. And thank you John and Mariela for a much better cover than the one I paid for,

Currently my website is ‘feeling fragile’ so I am unwilling to create another page as I might have to rebuild the website.

If you want to see what the cover looks like, as well as the blurb – you will find it on Amazon.

Living at the End of an Oxygen Tube

Some days at the start it felt as if I was being sucked into a vortex and that is what the cover is meant to represent.

So, for this week… 

God bless and be safe!

Susan

Awards, memories, and oxygen

Awards, memories and oxygen

When you live connected to an oxygen machine, little pleasures are great, big surprises are better.

There was a big surprise this year. Keep the Flame was Solo Medalist in the New Apple Book Awards, 2018. It is the fourth book in the Apostle John Series, and I looked back over the years to the writing of the first book.

My husband died when book three in the series was almost finished. When he was in the hospice he told me “hurry up and finish Light of Truth if you want me to read it.” He was as invested in the people in the series as I was.

Such a lot has happened since then. He would be surprised at my life now, having to live my life attached to oxygen machines. I also think he would be pleased at the success those books have achieved. His encouragement spurred me on, then the characters needed their stories finished.

Looking back at the series

It is 92 AD, and the Apostle John still lives! The Temple where he walked with Jesus and the other disciples no longer exists. It was destroyed by the Romans in 70 AD

John is proof that the sect the Jewish authorities had hoped would die following the crucifixion of their leader, did not happen.

The temple that was (dare I say it) almost like an idol to the Jews of the time.

Many of those early followers of the ‘Way’, later to be called ‘Christians’ in a derogatory term, had fled under the persecution from the Jews. With the destruction of the temple and Jerusalem, came the Diaspora and many escaping Jews joined their fellow Jews in various cities around the Roman Empire.

The fiction calculations for the book that became a series

Using biblical principles I worked out that John, the apostle, could have been married. (Most people do not believe he was, but I found some interesting opinions on his wife from other websites when researching the book.) I ignored them, and decided on a fictional wife, who had died.

Working out his age in 92 AD was relatively simple, so calculating the age of any children, and their children was again worked out using the knowledge of the age when Jewish men married.

Daughters were married off far earlier, often soon after puberty, but men had to be mature, settled, and able to support a wife and family.

Thus, although the Apostle John is a key figure in the series of books, he is not the main character. Readers have identified Benjamin, the great-grandson I ‘gave’ John, as the ‘hero’ of the series.

The setting of the series

I chose Ephesus for the location as most of the evidence pointed that way.

Someone I knew declined to show any interest in the book because her pet theory (which I did consider) was that John had gone to England.

Historically, I could not find enough evidence to support that, so the setting was Ephesus.

As a child I loved history as a class subject, and as a young person, I devoured books on the Tudors, some of the French ancestry, Scottish history and a long series on the Popes. The Medici and Borgia families fascinated me.

My home town of Peebles, in the Scottish Borders is not only a beautiful town, but one steeped in history… and the birthplace of many famous people.

But that is another story.

The Apostle John Series

Never did it  occur to me that I would be writing Christian, historical fiction.

I wrote manuals to help my computer classes. But when listening to a detailed Bible study on the gospel of John, I wondered. “Could that be true?” and so started a long trail of research, which does become addictive.

What I found were the people and culture of the times in which these folks in the Bible lived! People who had been just stories until then. I found out what it was like living under Roman rule, being hated by Jews, Romans and pagans.

They were all people, and they all had trials and challenges.
(Which is why I chose to write from the omniscient view.)

It seems I succeeded in showing their humanity, because I have emails and reviews saying that.
(Although many reviews disappeared in the last Amazon algorithm review purge.)

There is a time to stop a series though, and that has come. A companion series, this time of novellas, completes the stories of the ‘other’ characters. The fourth and final one is ‘waiting in the wings.’

Researching the series

I consulted many versions of the Bible, Josephus (a former Pharisee, and prone to exaggeration according to many commentators). Lionel Casson’s ‘Travels in the Ancient World’ was amusing in parts.

I subscribe to Biblical Archaeological research newsletters and Biblical History newsletters.

Suetonius gives insights into the Roman emperors he writes about, as well as various Roman festivals and everything Roman. I have a shelf full of books and hard drives with gigabytes of research

The Awards my husband never knew about

 Hold the Faith – Finalist in Readers’ Favorite International Book Awards.

Thanks to some special friends, I went to the Award ceremony in Miami, Florida.

Book 3 – The Light of Truth – Finalist in the IAN Awards.

(My husband died before I solved something that needed to happen was worked out so he never knew the end.)

Book 4 Keep the Flame – Readers’ Favorite Finalist for 2017 (Yes, I went back to Miami.)

Then this year I was told it was chosen as the Solo Medalist in the 2018 New Apple Literary Awards.

I look forward to telling him.

Susan

Living with oxygen 24/7

let us fly

It was slow, almost unnoticeable at first, my need for oxygen. However, my difficulty climbing stairs, or walking uphill eventually increased until even walking on even ground made me breathless.

Then dressing or undressing meant I had to have a ‘break,’ a sit down, and making the bed was done in stages.

Then two things happened. My physiotherapist noticed my difficulty and took me on a six-minute walk test. We did not go far. My oxygen levels dropped quickly. Her comment… ‘You need to be on oxygen’ and she sent the result to my doctor who was on holiday at the time.

Then, rather reluctantly, I took my son’s advice and underwent a sleep study. The result of that had the person giving me the results say I needed to see the doctor immediately, my oxygen levels were dangerously low. She had me ring the surgery from her office.

In the metropolitan area a General Practitioner cannot prescribe oxygen so I was referred to the hospital. In the meantime, so that I could be factual at the appointment I bought an oximeter (Measures oxygen levels) and discovered my oxygen level is normally low, exercise takes it to an extremely low level.

Start of the journey to home oxygen

Well, first there was a hospital appointment to Pulmonary Physiology. I was there last year for a flight simulation test, and I had spent a lot of time there in previous years with my late husband. He had the tests done every six months. 

I also had arterial blood taken. It’s painful. (Mainly because the artery is deep and the doctor has to find it.)

“An arterial-blood gas (ABG) test measures the amounts of arterial gases, such as oxygen and carbon dioxide. An ABG test requires that a small volume of blood be drawn from the radial artery with a syringe and a thin needle…”
Wikipedia

oxygen testing blood gases

Then came all the breathing tests. At least nowadays the ‘box’ the patient is shut in for one of the tests is clear.

oxygen breathing test

Yes, a peg on the nose is used.

Oxygen at home

oxygen concentrator and oxygen cyclinders

A truck delivered an oxygen concentrator, three medium sized oxygen cylinders – a word about them later – and a large one in case the power goes out.

The medium-sized ones are for going out. Portable is not a word I would have used. At five kg it is a challenge to lift, never mind to put in my four-wheel walker.

Living alone, the eighteen metre (fifty-nine feet) tubing is reasonably easy to not trip. Roll it up going one way and unroll it the other way.

Bed, well that’s more of a problem. I have to make sure the tubing crosses the bed but is not in the way on the floor if I have to get up in the dark.

Breathing...

This is ‘sneezin’ season here, and since there was a lot of rain all the trees, shrubs and ‘the bush’ is alive and beautiful with blossoms. (Pollen-causing blossom.)

When my nose runs or is blocked, the oxygen cannot get through. Then there are the nosebleeds. (I won’t show you the pile of tissues from the last nosebleed. Blood thinners clearly aggravate the problem.)

So, living with oxygen is a challenge

As my home help said, ‘You think it is going to be simple, and you are going to be able to breathe easily, but it’s not, is it?”

No, it is not, but it is not impossible. It is just a question of finding work-arounds – and paying for home delivery on shopping.

The first few hours with the noisy machine purring, hissing and popping away had me glowering at it from my study and wondering how much electricity it was chewing up. It is on twenty-four hours.

There is a whole list of safety rules:

Clean the filter once a week.

Keep the oxygen bottles away from any source of heat.

Stay three metres from my gas cooker. So, it has to be briefly turned off so I can cook.

Stay away from smokers. There are rules in Australia about not smoking near entrances to shopping centres, not allowed at all on hospital grounds – but smokers are not good at keeping the rules. Not having a go at smokers, for many it is stress relief as well as addiction. But if that ‘lady’ had kept coming at me the other day – would she have blown us both up? Maybe. There were nine hours of oxygen in that bottle. When I asked her to stay away because I was using oxygen, there was a torrent of abuse directed at me.

There is a book with all the do’s and don’ts, but it is the simple daily things, like showering and hair-washing, bed making and simple household chores which contribute to the learning curve.

Another learning challenge

Susan