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!

One Plate in the Dishrack

parched ground, loneliness

One plate in the dishrack, one fork, one knife, no spoon. “I never have been a dessert-eater.

On special occasions I will have a chocolate ice-cream on a stick. There is little point making dessert for one.”

This is reality for many widows or widowers who only have themselves to cater for.

Some single people choose to live alone

Chocolate ice cream on a stick
one plate in the dishrack

The key – a matter of choice.

If a person chooses to live alone, either they are totally content with their own company, or have support networks outside the home environment.

For widows, widowers, or people who have been abandoned by their spouse/partner it is not necessarily a matter of choice. For them…

One plate in a dishrack is a reminder of their loneliness.

one plate blog, forgotten

I did a great deal of reading on this subject before starting this post… that, and personal experience as well as the experience of other folks in my position.

One person said, “I feel that I am the loneliest person in the world.”

Someone else might compete for that title.

There are many groups on Facebook, I belong to some writer groups where I can ‘meet’ with peers because there few authors where I live, and even fewer in my genre, so it is fun to be part of a group, even if it is online. But there are other groups, and occasionally something will appear from one of those other groups. The image beside this was from a group called Gramma’s Giggles and Fun.]

Feeling forgotten is the ‘killer’ of enthusiasm in so many people.

One plate on a table is a person alone.

It might only be for one meal. It might not be. If the one plate is all a person has day in day out, week after week, month after month, year after year, that the person would be correct in questioning if they have been forgotten.

A person living alone through no choice of their own is missing one incredibly important thing – encouragement. It’s true we all need it – the busy mother who feels taken for granted, the many workers or carers who rarely hear a word of thanks, or appreciation. A person living alone has no one to give encouragement. Perhaps there used to be a spouse who appreciated the other. Now, there is no one.

Statistics I read say that people who are lonely, particularly seniors, are more vulnerable to chronic illnesses, depression and conditions leading to early death. (It didn’t mention suicide, but I suppose that could be a possibility.)

Something else it did not mention but which I think is a danger… being ‘conned.’

Something else it did not mention but which I think is a danger… being ‘conned.’

Statistics graph

Frequently on the evening news or on current affairs programmes are reports of how many people have fallen for some ‘con’ (scam) and have lost thousands of dollars. One could wonder how the person was so easily fooled. Perhaps they were a ‘one plate in a dishrack’ person. As well as needing encouragement a person without emotional support, without visitors needs to feel useful. The ‘one plate person’ might have raised a family, might have had an important job – or at least a busy one, perhaps they now feel redundant and are thus more vulnerable to being scammed.

hook imageNearly all the scams I have seen reported as having victims  where I live involve someone saying they need help – for themselves or a family member. A huge carrot to someone who needs to feel needed, feel useful,  to help someone.. And they are hooked!

The suggestion is often given to join a club (a bit of a threat to an introvert), or to volunteer. Many older people do. But what if the ‘one plate person’ already has a chronic illness, no transport, or difficulty walking? Perhaps they are on the low government pension and have no money to go out to activities.

Worst case scenario – no longer a one plate person, but a recluse.

It does happen.

A few hints to help the one plate person

  • If visiting is not possible – send a card.
  • If they are on the Internet, and many seniors are these days – a short email saying you are thinking of them/ hope they are well.
  • Suggest they write down a memory to share with a grandchild, or to share with a class of young children. Who knows, it could end up being a memory a week or a day and help youngsters understand the past.

The popularity of TV shows like Downton Abbey, and Call the Midwife demonstrate there is an interest.

A phone call to someone living alone comes with a risk – if you are the only person he or she has had contact with that week be prepared to donate some time.

Wherever you meet a one plate person, listen. So many of us listen to give a reply but do not really listen to what is said. Listening is becoming a lost art… but that is another subject.

For now, please don’t judge the person who is alone, negatively. Consider, every positive thing you say to someone else becomes part of you, and might mean the world to them.

Please,

Tread softly – you might be the difference between despair and delight to someone who is lonely.

Susan

It Takes Courage

courage to face mountains

It takes courage was an interesting comment I received about coping with persecution. It was an excellent observation.

As mentioned in last week’s post, in Hold the Faith the young men in the pre-baptism class were warned of what they might face… death in the arena,  it took courage for them to come back the next time, and to take the risk of being baptized in the river.

It took Benjamin (in Grow in Grace) courage to return to Ephesus after running away, after being overwhelmed by a trial. He was embarrassed and fearful.

Nowadays, we might think of courage as facing the ‘big’ things, like rescuing someone from a burning house, or saving someone from drowning, or a car wreck, there are many small act of courage in everyday lives.

Everyday courage

There are many people who face beginning each day knowing every movement will be painful. A great number of those will not have had much sleep. However, they face each day… and do their best.

The scoliosis pictured below was painful for the sufferer, and there are all too many like him.

moving with scoliosis takes courage
X-ray of spine with scoliosis

Would these people suffering this pain say they were courageous? Probably not.
But they are. Daily.

The strain on parents whose child has a life-threatening illness is horrendous. Yet they carry on. Would they say they are courageous? They probably do not even have time to think about it. One parent was quoted as saying,

“You never know how strong you are until being strong is the only choice you have.”

Sometimes facing the stress of going to work each day to an environment where there is strife takes courage. Even if there is no open bullying there can be such negative ‘vibes’ that make a workplace a source of anxiety. Yet many people have no choice but to face their reluctance and go to work – they need the money.

Courage comes in many guises.

Have you ever thought that the person who is struggling to give up smoking needs a great deal of courage, not only willpower?

And what about people who suffer from agoraphobia? The symptoms can include fear of open spaces, public transport, shopping malls, or simply being outside the home. For someone with this fear, even with help it takes a tremendous amount of courage to venture outside their front door.

shut-in

I have friends who are blind. They go to work, travel on holiday, and go to restaurants… without seeing. For some, it takes courage to trust that they will be safe and not miss a plane.

Yes, there are a great many people showing courage in the simple things in life… things most of us take for granted.

Unless we walk in their shoes we will never know how much courage it takes a person to face each day.

Let us ‘walk softly’ with others.
The mountains shown in the main image represent only a fraction of the challenge many people suffer daily.

They have courage!

Susan

Life as a Carer

It is lonely being a Carer

Anyone who is chronically ill needs a carer, or carers.

Last week I shared an item that I reacted to… that of a man, who was refused a flight booked by a hospital for a lung transport.

The news article (Adelaide Advertiser, South Australia) which prompted the blog was about a man with Pulmonary Fibrosis who had come up as a match for a lung transplant and been refused a seat on the flight the hospital doing the transplant had booked. I will not go into the details of that post, although I do need to make an observation.

One… there might not have been oxygen available on that flight for the man. This seems strange since the flight was booked by the hospital who would have done the transplant had the man been able to arrive there in time.

However, it also stirred up my thinking about the Carer… the person or people who care for the person with a chronic illness.

Unless a person who has a chronic illness lives alone and has no visitors, that person has at least one Carer.

Life as a Carer…

Life as a Carer often involves being a ‘parental’ figure. Often the person being cared for does not have an accurate view of his or her condition. This is a hard part of the carer’s job. Being the one who assesses what is needed for every hospital appointment, how to travel there safely and what medications might be missed/needed during the time away from home.

But carers often have the unenviable role of ‘nurse’, and – there’s more…

Carers often have to learn…

Carer has to learn

About the disease, its treatment, and management

About the medications prescribed including what they are for, any special instructions and potential side effects

Sometimes these put the Carer into the role of ‘antagonist’ to the person they are trying to support, often the person they love.

The carer needs…

  • Skills to help manage the fatigue, pain, frustration, and isolation that people with chronic disease often get – as well as their own.
  • To be able to communicate effectively with health professionals by answering questions accurately, asking your own questions and making sure you understand the information provided to you. (Talk about the information needed with the person you are caring for, if possible, and write the questions down and take them with you.)

One of my huge frustrations, and it was my late husband’s also…  was the specialist/doctor wanted him to answer questions. However, he did not understand the terms they used, and having been a nurse, I did. But, at least to begin with they did not want to hear my observations on his condition.

This had a counterpoint (opposing viewpoint) – sometimes my observations and his – clashed.

I remember attending a workshop for carers… At the beginning we were given a list of all the roles a Carer performed. It was a long list.

Something else a Carer needs –

… Understanding – or at least acceptance.

If you know someone who is a Carer – try to ‘cut them some slack’ – one of the first things to happen is they become ‘unreliable.’

  • They cannot make arrangements to have friends come to visit, or go to visit them. Many times they will have to cancel any arrangements. So, either the friends drop them, or they withdraw rather than face the embarrassment of having to cancel… again.
    • You will have to understand. (Or give up on the person.) It would be kinder to expect nothing and accept that it is a black or white spectrum. There are no shades of gray in this kind of life.

If you decide to care for the Carer… and the person.

  • Be understanding.
  • Accept that arrangements might change without notice, and do not take offense if they do.
  • Be a person they can trust with their feelings.

Being a Carer for a loved one is a very difficult ‘role’, so you need to accept that it is a way of life – their way of life. Lives which revolve around medical appointments, tests, medication times, and sometimes hospital admissions. These are the ‘outings’ for the Carer and person being cared for.

Being a Carer – or a person needing a carer is a very lonely place to be. Ask any Carer and they will tell you how difficult it is to hide their feelings and struggles from the person they are caring for. Ask anyone needing care and, depending on their insight about their Carer, they will tell you how much it hurts them to see the person caring for them struggling to cope with their care.

Whether the person is a Carer of an adult, a child, or someone in between, caring for someone with Alzheimer’s disease, or any form of dementia – in spite of differences in the type of care, they face the same loneliness. Sometimes the Carer never ‘gets’ their friends back. Without a supportive family or network, isolation sets in and becomes a way of life.

On the outside, isolated, although near people. It is a lonely place to be.

Loneliness of a Carer, in a crowd

Just thinking, and sharing.

Susan