I know my body so well that I can manage the medication myself

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Helen, 31 years old

"My life used to revolve around my disease. Now I'm happy to have accepted it as being a part of me."

I think I already had as a child but it was only diagnosed when I was 25 years old. The signs that were there in my childhood were never really taken seriously. I suppose I always ignored them. Whenever I had difficulties breathing, I would tell my friends how happy I was that I at least didn’t have .

I can remember the day my was diagnosed as if it were yesterday: I had a tight feeling in my chest and only just managed to make it up my neighbors’ steps and ring the doorbell before pretty much collapsing. My neighbors then took me to see a lung specialist, who told me I had . I was immediately given oxygen and liquid infusions, but I didn't have to go to hospital. For quite some time I was only able to walk slowly, bent forward, with my shoulders pulled up, and found it difficult to get enough oxygen.

I used to get very frustrated sometimes

Once I had been diagnosed with , I tried to rearrange my life accordingly. It dominated my life at first. Everything revolved around my illness. It took a while to get used to. To be honest, I found it pretty annoying at times. Although I had had for a while and it had affected my life before too, I hadn’t been as aware of it then. Taking medication every day, using the inhaler, was sometimes a burden.

When I first found out that I had I was in the middle of my studies. I had never been able to join in all the physical activities that other people had. I felt limited in the things I could do. I used to get very frustrated sometimes. I always used to think that I had to be as good as other people, always compared myself to them. I realize now what a waste of time that was. I never used to appreciate my own abilities, the things I was good at.

I've never had an asthma attack while singing

My quality of life has improved a lot since then. I've developed a lot of new interests. For example, I regularly practice Qi Gong and do vocal exercises. I'm very happy to have discovered that I have a voice. People used to say that I couldn’t sing. Two years ago, during a class, I realized that my voice wasn’t that bad after all.

Once, when I had , my lung volume was reduced by more than half for a while, but I could still sing. Unlike when I talk, I don’t have coughing fits when I sing. I really enjoy singing and am now a member of two choirs.

I first came across Qi Gong five years ago during treatment as part of a special program, where I was given a lot of ideas. I carried on practicing it at home. After doing Qi Gong exercises I feel stronger and full of energy. It simply makes me feel great.

The inhaler medication makes me feel safer

I have a more positive attitude towards life now. When I had the first time I was pretty depressed for a while and started to think I wouldn’t be able to cope. Nowadays I take it as a sign that my body needs a break and I make sure that I take the time to relax. I’m okay with it. Of course there are days when I feel a bit down, but I suppose that’s normal.

I always have my inhaler and other rescue medication with me just in case. It makes me feel safer. I always carry everything in my backpack and take the inhaler with me. It's become second nature to me.

Over time I've come to realize how little oxygen a person actually needs to survive, as long as they remain calm and don't start to panic. If I feel an attack coming on, I do breathing exercises. That helps me. There have been occasions when I had a peak flow rate below 10 percent and still managed to stay calm. Whenever the rate is that low I use the inhaler, of course. I don't even start trying to do the breathing exercises. I just go straight for the inhaler.

I now know my body so well that I can manage my medication myself, obviously in agreement with my doctor. I no longer take steroids regularly. But everyone is different and needs different treatment. There are, no doubt, a lot of people with who have to take steroids on a regular basis.

I use a “traffic light system” in my asthma diary

Asthma attacks can be life-threatening so they shouldn’t be taken lightly. I have at the moment so I have to inhale medication regularly again. First of all, I use a bronchodilator to open my airways, and then I use the steroid spray after five minutes. I measure my peak flow rate before and after inhaling the medication and make note of the readings in a diary. Plotting the data on a graph usually reveals that the medication has made a clear difference.

When I go to the doctor I take the diary along. I use the “traffic light system” to note the severity of my symptoms in my diary. Red shows that the situation is critical, yellow means that I have to be careful, and green shows that the symptoms are under control. When I measure my peak flow rate and enter the readings into my diary, I can see straight away whether I am in the green, yellow or red zone. If I’m in the red zone, I know I have to seek medical help immediately. If I’m in the yellow zone, then I have to watch out. And if I’m in the green zone, I can continue taking my usual medication.

My life used to revolve around my disease. Now I'm happy to have accepted it as being a part of me.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners

have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Updated on November 15, 2017
Next planned update: 2021

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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