Lung Disease

person with lung disease on oxygen

Lung disease is not always caused by our own bad habits. There are people with Cystic Fibrosis, COPD, Lung Cancer, Pulmonary Fibrosis, Pulmonary Arterial Hypertension, Asthma, and Mesothelioma. In fact, according to the Lung Foundation there are over thirty types of lung disease.

https://lungfoundation.com.au/

Whether or not a person has smoked, he or she can suffer one of the many lung diseases.

The Stigma of Lung Disease

Over 40% of people with lung disease feel there is a stigma from the view that lung diseases are self-inflicted and smoking-related.
Not always true.

However, from my experience using oxygen, I would have to agree with that statement. There is a stigma. The reaction of some people when I am out, usually in a shopping centre, is varied. Some people are embarrassed and look away, a few smile, while others clearly are repelled by the sight of me using oxygen.

For most people with lung disease, before oxygen therapy, breathing could be likened to trying to breathe through a plastic bag.

lung disease struggle to breathe

Oxygen and Lung Disease

Not everyone who has lung disease uses oxygen. The criteria for being prescribed oxygen is much more than breathlessness. There is a series of tests which are done to assess whether or not oxygen will help. If it will help, a respiratory physician will determine how often and how much oxygen will need to be used.

I need oxygen 24/7, and this is described as palliative care. However, on ‘good’ days I have a reasonably normal life. Getting used to trailing around an 18 metre (59 foot) tube was a challenge and is quite a ‘trip hazard.’ But it is one that can be met.

(I share my experiences, the challenges and solutions in Living at the end of an Oxygen Tube.)

oxygen tubing

Use it or lose it

This common term really is true when it comes to living with chronic illness whether it be lung disease, back problems, or many of the debilitating conditions that make us reluctant to move.

It is not easy to make the effort some days. Especially the days when it is a struggle to breathe, or when the herniated disks make walking difficult.

Attitude

This is the key – the attitude of the person with lung disease, and those who care for them. It is natural to grieve the loss of ability, but it is not wise to become bogged down in self-pity. And it happens. However, life with lung disease, whether on oxygen or not, can be quite fulfilling. Some days it is more of a challenge than others. But rise to the challenge. And if you are someone who supports/cares for someone with one of the many varieties of this disease, recognize the difficulties, don’t gloss over them. Then encourage your ‘someone’ to become involved… join a club, write an article, or take up a hobby. And be aware, there will be many days when going outside the home is not possible.

However, it is true… Life with lung disease can be fulfilling.

Susan

About the writer:

Susan M B Preston is the author of several award-winning Biblical fiction novels.

The Apostle John Series

Hold the Faith (1st in the series. Award winner)

Grow in Grace (2nd in the series)

Light of Truth (3rd in the series. Award winner)

Keep the Flame (4th in the series. Double Award winner)

Hell Shall Not Prevail (5th in the Apostle John Series.)

Novellas:

After the Thirty Days

No Evil Shall Befall You

Clash of Faiths

Shadow of the Past (coming soon.)

Non- Fiction:

Living at the end of an Oxygen Tube.

Quarantine, Why?

quarantine to stop infections spreadking

Quarantine as defined by dictionary.com is…  1 –  a strict isolation imposed to prevent the spread of disease.
https://www.dictionary.com/browse/quarantine

I wonder if ‘quarantine’ is even understood by ordinary people today. It seems the drug companies do not want people to understand. After all, we are to ‘soldier on’ according to a medication advert shown on TV  here in Western Australia… it is a medication that is supposed to enable someone with the ‘flu to go to work and soldier on.

They might feel better, somewhat, but how many others does that one person infect?

Reasons to quarantine yourself

A local newspaper headline recently said…

WA flu deaths up 925 per cent amid brutal and early start to season.
Angela Pownall: The West Australian, reported.

Full report here…
https://thewest.com.au/news/public-health/wa-flu-deaths-up-925-per-cent-amid-brutal-and-early-start-to-season-ng-b881248197z

Waiting for a prescription, I stood behind two women discussing their young children suffering with the ‘flu. Although one woman’s child had been given the ‘flu shot, it had not protected her and the child had been very ill. With little relief she was also treated with Tamiflu. (A prevention and a treatment.)

The other woman’s child was in hospital. Their description of their children’s ‘flu symptoms was vastly different from the ‘flu I remember in the past.

A recent update on a news programme here in Western Australia stated that the vaccines recently used are probably no longer effective because the virus has mutated, already.

This is a reason for quarantine. One child taking it to school potentially could infect many others.

There is another ‘bug’ or virus knocking people down at this time.  An infection causing virulent vomiting and diarrhoea (Australian English spelling’) Other than some friends who have suffered it, my family doctor asked me at a recent appointment if I had symptoms, and explained how prevalent it is.

There are quarantine rules in the Bible.

And I cannot help but see how the laws that were given about quarantine, were given by a merciful and loving God.

For example…

Take heed in an outbreak of leprosy, that you diligently observe and do according to all that the priests, the Levites, shall teach you…
Deuteronomy 24:8

I looked up leprosy, wondering why (as mentioned in the previous verse) Miriam was put out of the camp for a week.

It was to prevent the spread of the disease.

(The rules for ‘diagnosing’ leprosy are given in detail in Leviticus 13.)

Many English translations of the Bible translate tzaraath as “leprosy,” a confusion that derives from the use of the koine cognate “Λέπρα” (which can mean any disease causing scaly skin) in the Septuagint. Ancient sources such as the Talmud (Sifra 63) make clear that tzaraath refers to various types of lesions or stains associated with ritual impurity and occurring on cloth, leather, or houses, as well as skin. It may sometimes be a symptom of the disease described in this article, but has many other causes, as well.
http://en.wikipedia.org/wiki/Leprosy (near the end, under the sub-heading Bible.)

So, all those restrictions would determine whether it was leprosy, with all the stigma, and poor conditions associated with being cast out of society, not to mention the complications of the disease itself. If it should turn out to be leprosy, then the spread of the disease was contained.

In this day and age

In Western cultures, leprosy is not such a common threat. However, with the many ‘plagues’ – like this year’s ‘deadly’ ‘flu outbreak in Western Australia and the ‘D and V’ outbreak and other rapidly spreading diseases, we would be wise to heed the instruction to quarantine ourselves.

Prevention is better than cure, quarantine yourself… please.

Besides, some people have what is called a ‘compromised immune system. Something you might recover from in a week, might make them seriously ill, or even die.

Serious thought,

Susan

quarantine yourself

Feel as if you are down a Sewer?

down in a sewer

Have you ever felt you are down a sewer, or in a deep pit? I know I have at times, and those sojourns down the sewer seem to last such a long time. Then just when it feels like there is some progress out of the pit…  bang!

Back down into it.

Jeremiah was in a sewer.

Jeremiah was a prophet in the Old Testament and he was put in a pit for telling the truth.

A pit in Jerusalem

Many commentators believe the pit or cistern was actually a sewer. Nevertheless, Jeremiah was in mud at the bottom of this hole in the ground.

“So they took Jeremiah and put him into the cistern of Malkijah, the king’s son, which was in the courtyard of the guard. They lowered Jeremiah by ropes into the cistern; it had no water in it, only mud, and Jeremiah sank down into the mud”
Jeremiah 38:6

Does your mud feel this deep?

mud in the sewer

In the sewer

Jeremiah found himself mired in a literal pit. He was caught in deep despair. The prophet was the object of hatred because he urged Jerusalem to submit to God’s commands. Jeremiah suffered abuse from those who persecuted him – slander, false accusations, beatings, anger, and all other expressions prompted by bitterness and vindictive feelings. Finally, the prophet was seized and thrown into an empty cistern. He sank into the mud.

The faithful prophet was emotionally and physically exhausted.

Despair is exhausting.

Despair can be defined as a loss of hope, and this often turns to anger. So, the next question is – ‘what do we do with anger?’

Recognize our anger.

  • Who is it directed toward?
  • Someone close to you?
    • Are you able to discuss it with the person?
      If not, walk away rather than fight an unwinnable fight.
  • A work colleague?
    • Try to talk it out.
      If that does not work
    • Gather evidence and take it to HR
    • Ignore them.
  • A work situation?
    • Create boundaries and learn when to walk away.
    • Work on an exit strategy.

Angry with yourself?

Recognize it. Own it. Only then are you able to start to deal with it.

Shame

Tease out the reasons but try not to dwell on them. Instead, look for a way you could handle a future situation in a different way. Remember the old saying, ‘Those who do not learn from the past are doomed to repeat it.’ Many people have said it with some variations.

As you see each ‘mistake’ or wrong decision you made… forgive yourself. I remember when I was in the sewer years ago and giving myself a ‘hard time’ when I saw my mistakes, someone said to me, “You did the best you could with the knowledge you had at the time.”

It helped.

Give yourself time

Eventually someone rescued Jeremiah from the pit, but he had to wait. I am sure it felt even longer than it actually was. 

Learn to wait. Expect to fall back into despair, anger, depression, but do not allow yourself to stay there.

Be patient with yourself because it is not possible to change direction immediately just because you see the need to change. Think of a cruise ship. It needs a lot of space and  takes a long time to turn.

One more thing…

Look for the things you are doing well. Learn to focus on them and not the mistakes.

This is something we all need to do. It seems easier to see our mistakes, especially when feeling tired or vulnerable.

Encourage someone, and encourage yourself!

God bless

Susan

And a PS

Positive affirmation

Guess what. I feel human

feel human when you meet others

I feel human for the first time in eighteen months or more. If you think that an odd thing to say, then praise God you have never lived with a life-limiting disease. There is a hidden cost… some life-limiting diseases are not obvious so they bring with the disease/limitation a psychological challenge of dealing with others who do not think they are ill. Now that I am on oxygen full time I have an obvious condition, that was not always so… as others have shared.

Since writing the blogs on living on oxygen, I have heard from people who are not on oxygen, but can relate to the isolation that chronic illness or life-limiting diseases has on those of us in these categories. Some are isolated by what is called a ‘compromised immune system,’ and that makes us very vulnerable to infections that others could shrug off.

Sadly, many – other than the sufferers – do not understand the threat an infection poses and do not quarantine themselves when they have an infectious disease.

Another isolating factor...

…Is  the effect strong fragrances have on people with lung disease. Sadly, people do not always believe this, which leads to more reason to isolate ourselves. It is easier to avoid the situations than try to explain… and annoy others.

The effects summarized greatly…

“Scents enter our bodies through our skin and our lungs. The chemicals in scents can cause many different reactions. Even products containing natural plant extracts can cause allergic reactions in some people.”
Read more…
https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents

And on household products…
https://www.lung.org/our-initiatives/healthy-air/indoor/indoor-air-pollutants/cleaning-supplies-household-chem.html

To be honest, I do not think you will understand if even if you have some of these problems mentioned, but have regular contact with people outside the medical profession.

Hopefully, I can explain.

I have lung disease, heart disease, adverse reaction to fragrances, and I am socially isolated.

So, why did I feel human This week?

Because I went out socially, not to a clinic or doctor appointment, nor for scans, tests or medical reviews.

If you have read any of my blogs on the subject, you will know that I live my life attached to a tube… an oxygen tube.
field marshall hat, planning abilityIt has been a learning curve adjusting to this way of life, and it has been very isolating. (I mention in my book, “Living at the end of an Oxygen Tube” that it takes the planning abilities of a 5-star General, or Field Marshall for even a simple trip out.)

A care agency supplied a support worker to take me out for three hours. As I said, not to an appointment, but to catch up with awesome people for coffee. I knew how long my batteries last on my ‘flow rate’ and took the number I would need.

Now, this does not mean I do not appreciate support I receive from family in the UK, the ‘digital’ support I receive from far-away friends and brethren, I do, and it helps me cope. So, also does my contact with ‘The Friendship Club,’ but the ladies I met up with this week… well, over the years, until I was unable to attend,  we supported and encouraged each other. We knew many of the other members well, and some more closely than others.

cartoon man listening to music

I feel human

I feel human, music note

Age is not the only reason for being, or becoming housebound. Perhaps it is a back problem,  and please do not dismiss ‘back problems’ or other mobility issue because they are serious and affect our ability to go out. On the other hand, it could be heart problems, continence problems, or grief issues, or even a loss of confidence in going out. Sometimes it is financial, lack of transport, friends died, family moved away, or some of the reasons mentioned at the start. There are people with various auto-immune diseases and those people are much more vulnerable to infections. Some of the medications for heart and lung disease reduce the body’s ability to fight off infections. So…

  • It does not take long for the world to shrink to the size of your home.
  • Sometimes it feels safer to stay home and try to avoid infections.
  • There are times when it is so difficult to walk… pain, oxygen saturation dropping dangerously low.
  • It is easy to ‘fall through the cracks’ when everyone else seems so busy.
  • For all those reasons and more it is easy to stay at home. To isolate. The longer the door is closed on the outside world, the harder it is to go out.

Walking groups are friendly places

Well, the one I went to is…

Mall walking group

That is where I went earlier this week… to a walking group I used to belong to, but have been unable to attend since August 2017.

This one is a mall-walking group and the members have varying abilities. Some, like I did the other day, attend for the social support and friendship as well as exercise. Many enjoy walking in a safe environment while others are ‘champion walkers’ – but all are friendly.

It takes courage

When a person has been isolated socially for a long time, it can be frightening to consider going out among ‘other humans.’  If you fit this situation…

  • Recognise the reason for the fear/anxiety
  • Is there a way you can reduce it?
    • I contacted people I knew in the walking group when I knew I could definitely attend.
    • Estimate what you will need. Is it oxygen? Is it medication? Is it continence aids? If necessary, make sure you have an angina spray (that is not out of date) in your handbag.
    • What do you need to do to reduce your stress?

Go forth, face your anxiety, and enjoy being human, and talking to other human beings!

Susan

I feel human!

Light at the End of the Tunnel

Tunnel, where is the light

It is sometimes hard to see light at the end of the tunnel when you are stuck in a long dark tunnel.
Perhaps it wasn’t so dark when you went in, or maybe you didn’t realize it was so long. But now you are stuck.

You can see no light at either end.


Don’t turn around, or you will lose your sense of direction. If you sit down to try and work it out, you might end up going the wrong way.

Have you ever felt like that?

Most of us have.

What is your tunnel?

  • Toxic work situation?
  • Betrayed by a friend… your partner?
  • Lost your job?
  • Had bad news about your health?
  • Or did you go chasing after something you thought better than you have now, only to find is was an illusion.

Whatever the reason, you are stuck in a tunnel.

The reaction to any one of these, and myriads of other causes, is the key to your way out of the tunnel.

Do you feel disconnected?

disconnected in the tunnel of isolation

Sadly, we live in a world where everyone seems to be so busy, but is their busy-ness their way to escape their feelings of hurt, anger, or sadness?

It is a common way to cope… keep yourself so busy you don’t have time to think about your situation. However, at the end of the day, it is difficult to hide from your feelings.

What do you do?

  • Get drunk
  • Have an argument with someone
  • Feel worthless.

You might be surprised…

If you knew how many people are suffering the same feelings of disconnection, loneliness or despair.

Perhaps it is time to ‘own your feelings.’ Identify the main cause you are stuck in a tunnel with no idea which way is forward.

Constantly trying to run from your emotions is exhausting and counter-productive.

People (or a person) may have hurt you, but your reaction to that hurt is your feeling.
Identify that, allow yourself to feel the emotion.
Are you able to tell a person who hurt you what you experienced… without blaming him or her?
Are you able to tell an employer the effect the atmosphere at work is having on you?

Is there a pinprick of light in your tunnel?

If it you discovered your friend was feeling what you are feeling, how would you respond?

Compassionately?

If so, do you not deserve the same treatment?

Respond to your own feelings in the same way you would a loved one who was sad or struggling.

Reactions are our responsibility.

If we do not stop to ‘own’ that, we will continue to blame others for our reactions and run from one tunnel to another.

If a spouse or child has died – it is okay to feel the loss. Know that over time the loss will still be there, but it will change and become bearable.

If your work situation is having an effect on your health and you can do nothing to change it… look for another job. (But don’t complain in an interview for a new job about the one you are leaving.)

If you are diagnosed with a serious, or terminal illness, yes, grief what you are losing, then make the best of the time, or abilities you still have.

Why spoil the present by dwelling on things from the past or fears about the future?

smell the roses image

A long time ago someone said to me, “Stop and smell the roses.”

It can be a challenge to step back from your feelings but it is good for your health.

“Refrain from anger and abandon wrath; do not fret—it can only bring harm.”
Psalm 37: 8 Berean Study Bible

Susan