Back soon

Back soon

I will be back soon…blogging, and writing my new series.

First I have to recover more energy and as much strength as will be possible.

Back soon - from where

Well, I have to admit I will not be back to ‘normal’ health. I had to adjust to a  ‘new normal.’ 

However in the last month I have been hospitalised twice, but now with treatment at home am starting to feel better. How long that will last for is not in my hands. Like many with serious chronic/life-threatening conditions, I plod on.

But in the last two days it looks as if this ‘exacerbation’ is turning around. Praise God… well, I do. 

So, pop back and have a look soon. I will be back soon… I hope.

Now comes the thunder. So turn off time.

God bless 

Susan

Face Masks or Nasal Prongs?

Face masks or nasal prongs blog

What is worse, having to wear those face masks or nasal prongs carrying oxygen? To be honest, it was only when I heard a friend talk about the frustration of having to wear a face mask that I made the comparison. Well, with one thing that was mentioned… the loops around the ear hurting. That is something I can relate to. I wear nasal prongs twenty-four hours a day, every day, and have done for almost two years. Behind the ears can become painful.

So, which is worse?

Wearing face masks or nasal prongs

First, a face mask

For someone who is claustrophobic, the face mask might be worse.

Conversing while wearing a face mask is difficult, and I have seen people pull them down to talk.
This is against the guidelines, but then – are people told the way to use them safely and effectively?
Some hints here… https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/how-to-wear-cloth-face-coverings.html

If sore ears from the elastic loops is a problem, then the ideas at this site might inspire you https://www.health.com/condition/infectious-diseases/coronavirus/how-to-stop-face-mask-irritating-ears

Some have problems if they wear the mask for most of the day because, if worn properly’ they breathe in their own CO2

Speaking as a person who is partially deaf, if I cannot see your lips when you speak, I cannot hear what you are saying.

The upside of the face mask… when you are at home, or other safe area, it can be removed.

Nasal prongs

face masks or nasal prongs, the prongs

There are several categories of users of nasal prongs. Basically, these are…

  1. Using oxygen via nasal prongs only on exertion
  2. Only at night
  3. When needed
  4. Sixteen hours or more per day
  5. Continuously

I fit the last category, and that’s where I related to the comment about the sore ears. Mostly, my ears are fine, but there are many types of   nasal prongs and some types hurt my ears. Plastic are the most difficult to cope with because they are hard to begin with. Soft vinyl is easier on the ears (and the nose.) Then there are ‘straight’ prongs or ‘curved’ prongs. (I discuss all these in the Memoir/Help guide Living at the end of an Oxygen Tube.)

Check it out here

When it all comes down to it… the best of these aids, face mask or nasal prongs, is the one you can take off at the end of the day and walk away without.

Some, like me, are stuck with the nasal prongs. But then the ‘upside’ of that is… it’s improving my life.

When all this is over, the face masks will not be necessary. But those ‘doing it tough,’ for whatever reason, will still be doing it tough. https://www.susanprestonauthor.com/covid19-doing-it-tough/

Let’s have a kindness day,

Susan

By the way, the biggest problem I had with the face mask – my spectacles steamed up.

COVID19 – Doing it Tough

COVID 19 doing it tough

Doing it tough applies to so many people and groups these days. Businesses, especially small ones are doing it tough. Of course that flows on to the people they employ, and there are a vast number (putting it mildly) of unemployed because of COVID 19. Surprisingly, to me ‘cos I never thought of it, sports players are doing it tough. They cannot play sports or train as a team ‘live.’

As time goes on, so many people are complaining of social isolation… sorry, I don’t mean to offend, but probably will. Beneath the layers of complaints are some groups of people I know of, for whom this is not a new problem.

Veterans are doing it tough

doing it tough, soldier

I have no personal experience of a veteran’s life, but since becoming aware of the problems, I have read some stories. The following comment, sadly, epitomizes people’s self-centeredness. It is shown so poignantly by a comment from a young veteran.

“I was watching the news one day and it was some trivial stuff about the price of fuel. I said to my dad, ‘I don’t get it, why is everyone so up in arms about the price of fuel when on the other side of the world there are people literally dying and no one gives a hoot?’ Dad turned around and goes, ‘Because this is their world’, and it just blew my mind. When he said that I realised that it was true, that deploying to warlike operations or coming back from war, no-one really gave a crap.”

Whole article here https://www.abc.net.au/news/2017-04-25/being-a-war-veteran-at-27/8467046

Think about it for a moment, and when you have thought, if you pray, then say a prayer for these people. If you are an employer, consider hiring a veteran.

Others doing it tough

Some, by ‘virtue’ of caring for the vulnerable, have to ‘self-isolate’ as a matter of course. I have a dear friend in this position. Her adult daughter is in the ‘high vulnerability’ category. She has had a serious health condition since she was in her teens. Now, she is more than twice that age and has to be extremely careful. Her mother has to self-isolate to protect her.

Another friend is a Carer for a vulnerable young man and has to self-isolate to protect him.

 

slave to age

People over a certain age are classified as being vulnerable, and in the ‘special category’ that others are supposed to respect. Most, people do, but others, thinking they will brighten up the lonely life of a friend, or acquaintance, ignore the warning. In spite of their good intentions, they are putting someone at risk.

Then there are ‘us.’

People with serious health problems whose lifestyle is isolated. Example…

My late husband and I suffer(ed) fragrance allergies. In those days it was seen as us ‘being funny,’ or exaggerating a dislike. Let me assure you, I used to like perfume, and my late husband used to like his aftershave. These were some of the many products we had to give up… and avoid people who would not respect our health conditions. It is a health condition.
https://www.fragrancex.com/blog/fragrance-sensitivity/

https://www.susanprestonauthor.com/fragrance-sensitivity-is-a-real-condition/

So many losses.

  • Our own lifestyle changes
  • Not being able to attend church any more
  • Nor could we attend movie or theatre performances
  • Even public transport became a nightmare.

It seemed that we became problems to our own families.

Another category

This has been brought to the front of my mind when I saw so many complaints from Facebook ‘friends.’ So many complaints about social isolation!

Some people no longer have a life! COVID 19 claimed their lives, and left their families grieving. Who cares about the people who have lost family members to this ‘plague?’

Then there are are many like me. Alone, chronically ill, isolated.

Since my husband died, over six years ago, this – and other ‘special’ times of year, I have had to celebrate alone.

Then, since my health took a ‘dive’ and I ended up needing an increasing flow rate of oxygen over the twenty-four hours a day I require it, I have been self-isolated. What is it the Americans say? ‘Suck it up.” Not quite sure what that means, but it sounds like what I have had to learn to do. Make the best of what I have, look at what I can do, and don’t bother complaining.

Most people are too focused on their own lives and difficulties to be interested in the lives of people like me, permanently in ‘lockdown.’

I am not insensitive to the difficulties of those unused to this way of life!

And I do pray for them to be able to cope with the separation. 

But when all of this is over,  their lives will continue.

The lives of people like me and those others mentioned in this blog will continue on in isolation.

This is not meant to offend, although I am afraid it might, and it is not the post I had intended for this week. However, I guess reading all those complaints about how difficult life is under these restrictions stirred me up.

doing it tough, woman alone

Closing thoughts… these restrictions might be saving lives… perhaps the life of one of your dear family members.

I hope so,

God bless

Susan

Slaves to a System

Slaves to a system

Slaves? Sadly, yes. We are all slaves to some system or other. Can you identify?

It might be to…

  • Debt
  • Your workplace
  • An addiction
  • Your health

There are lots more that could be added. Such as some of us are slaves because of age. What does that mean? No longer being able to do the tasks, or enjoy the pleasures you once had.

Slaves to other people’s opinion.

Over the years I have known many people with what are now called ‘hidden illnesses.’

These includes chronic physical conditions such as arthritis, asthma, diabetes, fibromyalgia, and others including brain injury after trauma. It can be very difficult for sufferers of these conditions who, in other’s eyes, have nothing wrong.

I thought the idea at the link below an excellent one.

https://www.headway.org.uk/news-and-campaigns/news/2019/sunflower-lanyards-take-off-for-passengers-with-hidden-disabilities/

Then we have those who think the elderly, especially if they are chronically ill, should be given a ‘death pill’ at a certain age. (Honestly, I read a discussion about that online.)

I am a slave to aged care

slave to age

When we are in the aged care system, it seems like it is the ‘luck of the draw’ whether or not you receive the help needed.

My several ‘life-limiting’ conditions are managed, albeit with a bit of difficulty some days, but I have one ‘condition’ that is either not believed, or not understood. A very strong sensitivity to fragrances. As I blogged about once before, Fragrance Sensitivity is a Real Condition https://www.susanprestonauthor.com/fragrance-sensitivity-is-a-real-condition/

My serious sensitivity to fragrances has cost me a home care provider. (They could not provide me with a carer who  was willing to not wear fragrance.)

So, what am I a slave to?

The sensitivity, or people’s opinions about whether I am or not?

My home is one of the few things in my life I have control over. Fragrance sensitivity is life-limiting in a different way from my ‘will-end-up-dying’ from the other conditions.  There are so many place I can no longer go… cinema, theatre, public transport, celebrations too because other people will wear some variety of fragrance. It’s worse than having the coronavirus… that will finish, the fragrance sensitivity is something that sufferers are stuck with. Some things can be controlled in my environment, but when other people come into my home wearing something that sets off my ‘allergies’ it is a nightmare to endure… and also life-threatening because I cannot receive the oxygen I need through my nasal prongs when suffering allergic rhinitis.

And if the person knows I am fragrance sensitive but chooses to ignore it – well, isn’t that a form of elder abuse?

Read the information at the links below if you have the time. Perhaps it will open your eyes, or perhaps not.

https://www.news-medical.net/health/Perfume-Allergy.aspx

https://www.health.com/condition/allergy/fragrance-sensitivity-health-effects

https://www.healthdirect.gov.au/blog/perfume-stinks-how-fragrances-can-affect-health

Some people are kind, others are rude. I have met, and had to deal with people from both ends of the spectrum and at various points in between.

What are you enslaved to?

  • Debt
  • Your workplace
  • An addiction
  • Your health

To some extent, most of these can be ‘worked on.’ Age is debatable, but the hardest to deal with is other people’s fixed opinions and refusal to consider anything but their own opinion.

Something to think about.

Susan

Not giving up, giving

Coronavirus – what do we know

Coronavirus threat

The first death from ‘the’ coronavirus has just been recorded in Western Australia First Australian death

The man was in the same hospital I was in last week. Am I panicking? No. In fact there is a great deal of somewhat confusing information about it, depending upon which source you read, listen to, or watch on TV.

About coronavirus

Coronaviruses are a large family of viruses which may cause illness in animals or humans.  In humans, several coronaviruses are known to cause respiratory infections ranging from the common cold to more severe diseases such as Middle East Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS). The most recently discovered coronavirus causes coronavirus disease COVID-19.
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

There is a lot more information at that site if you want to find out more.

How dangerous is this ‘new’ strain of coronavirus?

Simple answer…

Authorities say “we do not know enough yet and will not know until more data becomes available.”

Quarantine

One thing that seems clear is that over the years we have lost the knowledge, or motivation, to quarantine ourselves, or a disease. Once upon a time parents ‘quarantined’ a child with an infectious disease. In the past people refrained from attending church services if they suffered a severe cold or flu. Nowadays we are urged to take a pill and ‘soldier on.’ Most people have no choice due to economic constraints.

(I have written about quarantine before… https://www.susanprestonauthor.com/)

Coronavirus and face masks

The general consensus of opinion is that most of the facemasks available to the public to buy are ineffective. They are ‘surgical’ masks and designed to protect a patient from a nurse/medical worker’s mouth borne germs.

Coronavirus and facemasks

What CAN we do?

  • Be sensible.
  • Be considerate.
  • If you have symptoms of a respiratory infection, stay home.
  • Be careful with your hand hygiene.
  • Avoid crowds

If you have a chronic health problem you are more ‘at risk’ so take the precautions seriously but don’t panic.

Plodding on,

Susan

About last week’s missing ‘post’ – I was in hospital. By the time I came home the five days of violent summer storms had started, and the computer was more ‘off’ than ‘on.’ In the last few days the NBN has been ‘down’ so I have a limited service, and no phone.

The runaway train came down the track…

runaway train, oxygen blog

It was not actually a runaway train, it was a runaway wheelie-walker.

It was carrying my oxygen cylinder, and the nasal prongs were in my nose when the wheelie-walker decided to ignore the brakes were on and take off down the travellator slope.

The runaway train?

travellator

Well, as I said, it was not a train, it was my wheelie-walker that decided to run away.

The brakes were on, and I had used this particular travellator many times before without incident. My back was sore and with one hand I was holding onto the rail. I must have lifted the other briefly from the handle of the walker and it took off down the slope.

wheelie-walker with oxygen cylinder Paula screamed, but could do nothing because she was behind me. A one and a half metre nasal tube connected me to the cylinder on the front of the walker, and I know from experience how much it hurts when the nasal prongs are ‘yanked.’ Fortunately there was no one in front to be hit by the oxygen cylinder, but there was danger. (Other than to my nose.)

Worse than a runaway train

In any accident an unrestrained oxygen cylinder can become a ‘penetrating missile.’ As the technician who set all my equipment warned, “In an accident it will go off like a torpedo.”

torpedo

It was restrained on the wheelie-walker, but the wheelie-walker decided to make like a runaway train, dragging me by the nose. Painful.

Saved

I grabbed the nasal tube and pulled. Fortunately, the tube stayed connected to the nipple on the regulator. This stopped the walker’s flight and I was able to catch up with it, and safely exit the travellator.

A new complication in life at the end of an oxygen tube.

Lesson learned… don’t trust the brakes on the 4 wheel-walkers.

Please understand...

If you have a friend or relative who is oxygen-dependent, or chronically ill in a different life-limiting way, please don’t think they are making excuses when they say they cannot do something.

Several times I have been invited to coffee with the group in a shopping centre café and had to try to explain why I cannot join them. The shopping centre is built on a rather steep slope. Although I am assured the café is on a flat part, reaching it would mean walking, or trying to, walk up a hill at some point.

In my case I also have to ‘factor in’ how long I will be out of home so that I can work out the oxygen required, or number of batteries that will be needed for the portable oxygen concentrator.

A couple of resources

To help you understand the challenges and planning required by someone on oxygen 24/7

https://www.susanprestonauthor.com/living-at-the-end-of-an-oxygen-tube

About that runaway train… it was a song frequently played on Children’s’ Favourites radio programme.Listen here… https://www.youtube.com/watch?v=TFJ3KayeUTc

The words… https://www.flashlyrics.com/lyrics/vernon-dalhart/the-runaway-train-11

Another ‘adventure’ in life at the end of an oxygen tube.

Susan

Fragrance sensitivity is a REAL condition

fragrance sensitivity cannot cope with these

Yes, fragrance sensitivity is real in spite of the anger it can arouse in someone who loves to ‘marinate’ in their favourite perfume or deodorant.

“Marinate’ in perfume was a term used by an Internet friend many years ago and since it describes what it seems like, I remembered it.

What is fragrance sensitivity?

Fragrance sensitivity can be defined as an irritation or an adverse reaction to chemicals in a perfume or other scented products such as air fresheners and cosmetics. Sensitivity to strong odors can make allergic people severely ill. People with asthma or other respiratory illness can be more susceptible to fragrance allergies compared to healthy individuals.


In the US Federal courts have ruled that an allergy to scents can be considered a disability under ADAAA (the most recent amendments to the Americans with Disabilities Act). Under this law, when an employee has a severe reaction to exposure to an odor or scent their employer must act on their behalf to remedy the situation
https://www.fragrancex.com/blog/fragrance-sensitivity/

A study by Anne Steinemann of the University of Melbourne, states, “All fragranced products that I tested . . . emitted chemicals classified as hazardous air pollutants,” Steinemann said in an email. “You may not realize you’re being affected until it’s too late.”
https://www.washingtonpost.com/lifestyle/home/bothered-by-fragrances-this-story-will-be-a-breath-of-fresh-air/2018/03/19/ace83e8a-26cd-11e8-b79d-f3d931db7f68_story.html

A sensory Assault

A horror to someone with fragrance sensitivity

For many people, repeated exposures can bring about a constellation of symptoms,” says Tracie DeFreitas Saab, MS, a human factors consultant with the Job Accommodation Network at West Virginia University.

Those symptoms, she tells WebMD, can range from classic “allergic” reactions, such as sneezing, runny nose, and watery eyes; to headaches, inability to concentrate, and dizziness; to respiratory issues, such as breathing difficulties and wheezing; to skin reactions, such as itching, hives, and other rashes.
https://www.webmd.com/allergies/features/fragrance-allergies-a-sensory-assault#1

Let’s get personal

Why am I writing this now? People who know me, know that I am one of the 500,000 people in Australia with fragrance sensitivity.

Two things happened this week. One, the bank. I went into my bank and stopped in my tracks. It smelled like a perfume shop.

fragrance shop

Even the care worker with me was surprised at the perfume that ‘hit’ us. I had to wait on a bench in the shopping centre mall and leave the care worker to do most of my transaction.

More surprising was the fact that the staff member I spoke to when she brought something out for me to sign said that the bank had installed the fragrance as a signature for their bank.

Really?

What are we coming to that bank branches choose to smell like a perfume shop?

I opened an account at a different bank after asking if they knew of any plans to have their bank branches perfumed. The answer was disbelief.

The second incident was on a different day with a Care worker who came into my home smelling strongly of perfume. My Care Plan specifies that no one is to wear a fragranced product when in my home or taking me out.

When I asked her to leave she chose instead to make a call to her supervisor, all the while her perfume was permeating the air in my lounge room.

When she eventually did leave she was angry and told me she would not give up wearing her signature perfume as she stomped out of my home.

reaction to someone with fragrance sensitivity

Psychological issues

In Australia, last year, people with fragrance sensitivities were 2% of the population. We are vastly outnumbered by people who love fragrances. We are often ostracized, or disbelieved, therefore isolated.

By the way… I used to like wearing perfume.

As for the physical complications, the articles referenced cover much of these, and you will find links to Canadian Lung Foundation documentation in the memoir/help book I wrote called Living at the end of an Oxygen Tube. 

I do not deny your choice to wear perfume, or strong deodorant, or any of the many fragranced products. All I ask is that you respect my need to avoid these odours. Please do not try to prove me wrong and wear something fragranced and come near me. It has been done before. Please know that long after you have left, whatever you were wearing is either still lingering in my home, or affecting me. This is not an ‘affliction’ I would have chosen, it isolates me and limits where I can go… and I am already more limited than I would like to be.

having fragrance sensitivity is isolating

There is much more I could say, but there is enough here, although I would like to hear your opinion… no matter what side of the fence you are on.

Struggling this week,

Susan

Dehydrated, I am told

Dehydration of the earth

Dehydrated?
I would describe the way I am feeling as having been run over by a ‘steam roller.’

Perhaps a steam roller is before your time, I remember them.

Well, this is how one looked, approximately.

being dehydrated feels like being run over by a steam roller

Why am I talking about being dehydrated

Because I have just had a phone call from the oxygen monitoring service and dehydration is what they figure I am suffering from.

(I have to log in online every day and enter a bunch of stats. Things like my oxygen saturation, flow rate of oxygen, and a bunch of questions to be answered.)

Cause: Fluid restriction, several days of 100 f plus days, lots of appointments.

Solution: Told to drink a bit more water, go watch a movie, or at least not do very much.

(When I was in hospital recently the consultant doctor said they wanted me to be dehydrated so that I would lose the fluid.)

Just looked at what’s on TV – not worth  wasting the electricity. Maybe read a book.

Since I do not have the energy to argue I will find somewhere to sit and drink some water. Preferably in front of a fan.

Hopefully, I will re-hydrate instead of dehydrate.

I have to smile,

Susan

Balancing the Books

time for balancing the books

These days balancing the books means making sure I write down all the appointments. Then, that done, I have to arrange transport to those appointments. 

LOL – yes, my life is more complicated nowadays.

It is also more difficult to keep track of things, and I find there is a reason for that.

Background: I have two life-limiting conditions that see me hospitalised from time to time. (Three times in this last year.) The last admission was for the CCF or CHF, the other condition stayed in the background, the COPD, but the coughing, which is always there, is annoying.

I noticed this article… https://www.ncbi.nlm.nih.gov/pubmed/20856825/

“CONCLUSION:

COPD is a major risk factor for cognitive impairment. Among patients with COPD, hypoxemia is a major contributor and regular use of home oxygen is protective. Health care providers should consider screening their COPD patients for cognitive impairment.”

Aha! There is a reason for my forgetfulness. <smile>

Balancing the books of living - mmm

This is more difficult with so much to keep track of. Despite this challenge, if everything is written down at the time – it is possible to balance those books.balance the books by keeping them up to date

As I mentioned in Living at the end of an Oxygen Tube 

“It takes the planning ability of a Field Marshall or a 5-star General to organize my life now.”

Every outing, even if it only to the local doctor (1 km) away, needs a plan, a time estimate and sometimes help to accomplish it.

I will be able to run a small town by the time this is over.

Now that I think of it, I need to go do some balancing with next week’s books. There is a bunch of appointments to check, plus fitting in the services to sort out. Then I need to check if I need oxygen cylinders replaced and ensure the POC batteries are charged.

Keeping the cognitive impairment at bay,

Susan

Self-Absorbed or Narcissistic?

Self-Absorbed or Narcissistic?

Is being self-absorbed the same as being narcissistic? Sometimes, but not always. Looking at the dictionary definitions… Self-absoribed is “absorbed in one’s own thoughts, activities, or interests” https://www.merriam-webster.com/dictionary/self-absorbed

Narcissistic

Having or showing an excessive interest in or admiration of oneself and one’s physical appearance.
https://www.lexico.com/en/definition/narcissistic

They sound pretty similar, although narcissism is also described as a personality disorder.

Being self-absorbed

Could be a pre-cursor to narcissism, or it could be a self-protection check. What do I mean by the latter? I mean that if you have one of the many chronic, or life-limiting diseases it is necessary for you to monitor what is going on inside your body. Are you well enough to…

  • Go out to the shops
  • Go to the cinema
  • Go for lunch with a friend
  • Have a friend, or friends, to your home for a visit.
  • Do some chores?

Being Narcissistic

Self-Absorbed or self love

From the Mayo Clinic…
“Narcissistic personality disorder — one of several types of personality disorders — is a mental condition in which people have an inflated sense of their own importance, a deep need for excessive attention and admiration, troubled relationships, and a lack of empathy for others. But behind this mask of extreme confidence lies a fragile self-esteem that’s vulnerable to the slightest criticism.”
https://www.mayoclinic.org/diseases-conditions/narcissistic-personality-disorder/symptoms-causes/syc-20366662

Self-Absorbed monitoring

I have many friends and acquaintances with life-limiting conditions that I am glad I do not have. However, I can ‘speak to’ having to monitor my breathing.

I can go nowhere without an oxygen delivery device. In my home, it is an oxygen concentrator. Then when I go out it is a transportable version, or an oxygen cylinder. Given the amount of oxygen I now need per minute, the oxygen cylinder allows me to be ‘out’ longer. This is necessary for hospital appointments, but has the drawback of being impossible for me to manage alone.

So, what do I need to monitor?

  • Is my oxygen saturation dropping when I walk from room to room? (If so, going out might be foolish.)
  • Am I well enough to drive? (Which includes loading the Transportable Oxygen Concentrator into the car?)
  • Will there be a lot of ‘fragrance’ where I am going? (This is not always possible to figure out.) Same with ‘Will there be smokers where I am going?’
  • How long will I be there? (Needed in order to estimate how much oxygen, or how many batteries I will need.)
  • If traveling by taxi/transport, will it be full of fragrance? (Most people with lung disease find it difficult to breathe where there is strong fragrance.)
self-absorbed needing a system check

“Chemicals used to add scents to products can cause serious health problems for some people, especially for people with lung diseases such as asthma or COPD . Being near a scented product can make some people sick.”
https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents

Perhaps the most difficult to deal with is the situation where someone says, “You’re looking well,” then treats you if you ARE well, although you are struggling to cope.

Some medical conditions are ‘invisible’ to others, but not to the person with the condition. That is why they need to be self-absorbed… and that IS different from being narcissistic.

Susan

When I first had to learn to cope with home oxygen it felt as if I was being sucked into a vortex and all the equipment piling in on me.

Eventually, I started documenting the learning curve, and I published it to help others.
https://www.susanprestonauthor.com/living-at-the-end-of-an-oxygen-tube