What breathlessness means to me

6 people living with lung conditions explain what breathlessness means to them

If you don’t live with a lung condition, you'll probably only feel breathless when you push yourself. Like if you run for the bus or play tennis.

But if you have a lung condition, your breathlessness may begin when you get out of bed in the morning and only stop when you fall asleep at night.  

So what does it feel like to be breathless? Sue, Margaret, Marie, John, Fran and Diz all experience breathlessness and shared their stories.

It would make me anxious, with feelings of panic, although I managed to stop short of panic attacks,

“Breathlessness is a symptom which is with me all the time, even at rest because I’m either recovering from it or planning the next activity to try to minimise it,” says Sue.

For Sue, breathlessness used to be frightening. “It would make me anxious, with feelings of panic, although I managed to stop short of panic attacks,” she says. But by learning breathing techniques to control her breathlessness and avoiding situations where she knows she will get very breathless, Sue is able to manage her breathlessness.

“Breathlessness has changed my life, although I haven’t given up trying,” she says.

When she becomes breathless, her breathing becomes shallower and more rapid. It takes more effort to breathe and her chest feels tighter. “I feel hot. My shoulders tend to go up and I have to try not to look like a fish out of water. I have to work hard to stay calm and in control. I have to stop what I’m trying to do and rest till I’ve recovered.”

While she says her breathlessness makes her sad, it has also made her stronger. “I won’t give in, well not until the last breath!”

Finding joy in every day

When Margaret’s day begins, so does her breathlessness. By the time she is washed and dressed, she is puffing and her breathing is louder. “I feel tired. I rest. I continue with a little housework, maybe bending to load the washing machine and dish washer,” she says.

Occasionally, in the privacy of my home, I get up and dance. I like to boogie, well maybe for a couple of minutes.

On pleasant days, she goes for walks with her husband and dog. But always on level ground, as she battles with inclines or steps. “I say walk with them, but really, I trail them. I am breathless and can no longer talk.”

“And yet, occasionally, in the privacy of my home, I get up and dance. I like to boogie, well maybe for a couple of minutes. My chest strains, I perspire and I am breathless but I don’t care. It feels wonderful.”

Good and bad breathlessness

Like Margaret, Marie experiences two types of breathlessness: good breathless and bad breathlessness. Or planned and unplanned.  She says the bad type happens more than the good type.

Marie steers a narrow boat

“Good breathlessness makes me feel happy, exhilarated, invigorated and like I've achieved something. It's when I've planned an adventure with my friends or achieved something I've always wanted to do or just had a lovely day out.”

“Bad breathlessness is unplanned breathlessness. It's having to keep up with colleagues when walking to meetings. It's the terror of the breathlessness that comes with having to rush with no ability to pace yourself. It's having to bend over to catch your breath. For me the worst feeling that comes with breathlessness is incontinence - that awful feeling you might wet yourself (or worse).”

Marie says that sometimes she feels breathless to the point of tears because it's so frustrating.

Learning techniques to reduce breathlessness

John, who has IPF, can walk 30 metres on the flat before he gets breathless. Steps are harder, and require a few stops. He moved to a ground floor flat that doesn’t have any stairs. “Running is out of the question and even bending over can make me breathless."

John

“I have to learn the best way to tackle any movement to diminish my chances of becoming breathless. Patience is a great help here but sometimes that can get frustrating.”

The weather can affect your breathlessness

For Fran, the weather can dictate whether she leaves her house. Humidity and low pressure make Fran’s breathlessness worse. So before she takes her medication or has her morning coffee, she checks the weather forecast.

“Home can feel like a prison, even if you're aware that your situation could be far, far worse,” says Fran. To keep busy, Fran does a lot of volunteer work, often from the comfort of her desk.

“In fact, the only activity I can do without huffing and puffing or coughing violently is use my keyboard!”

“It is so distracting and exhausting”

Diz

When you experience breathlessness, the natural and vital function of breathing becomes something that you are both hyper aware of and ruled by, says 74-year-old Diz who is living with sarcoidosis. “It is so distracting and exhausting,” she says.

Diz uses oxygen therapy to help her. While she was very resistant of it at first, she now accepts that the oxygen helps her and allows her to lead the life that she “enjoys most of the time”.

“I have had to accept that being out and about with my oxygen concentrator is like wearing a badge that says I am different and a bit vulnerable,” says Diz.


What does breathlessness feel like to you? Let us know on Facebook. You can also read our health information about breathlessness.


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18 January 2018