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.”
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.
It 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.
I feel human
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…
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!