It feels like I’m drowning all the time: Lotus’s story
Lotus always had mild asthma until six years ago. Then her symptoms started getting progressively worse, until by 2023 she was so breathless that she couldn’t work full time anymore. She was diagnosed with a rare disease called Pulmonary alveolar proteinosis and now uses oxygen to help her breathe.
I struggled to climb the same stairs that I had climbed for years, that’s when I noticed something wasn’t right. I visited my GP and explained the situation to them and they put me on antibiotics in case it was a lung infection. The antibiotics didn’t work, so I was referred to a specialist team for tests.
They did an x-ray that showed that I had fluid in my lungs. The team took a sample of the fluid and I was eventually diagnosed with Pulmonary alveolar proteinosis (PAP) which is a very rare disease where the air sacs of the lungs don’t work properly.
My lung condition is so rare, it only affects around one person in every ten million
I would describe my condition as feeling like when you’re swimming and you keep taking in water. It feels like I’m drowning all the time. I feel generally fatigued all the time.
Since January, I have been using an oxygen concentrator. I have to carry it around with me all the time, it’s not small, can be very heavy and has a short battery life. I always have to plan ahead if I’m doing things like meeting friends or doing food shopping.
When wearing my oxygen in public, strangers tend to approach me and touch my shoulders to give their sympathy. I often get lots of stares too but that doesn’t bother me too much. I try to make my oxygen bag colourful, with pins and badges as I want to make it look like more like an accessory rather than a medical aid.
I want to normalise and represent young people using oxygen publicly and at home.
Although using oxygen somewhat limits me, it really has changed my life for the better as I am no longer bed bound. This is just an aid - just like a walking stick or a hearing aid, it allows you to go out and do things you struggled to do before.
For more information about home oxygen therapy, visit our website. Or contact our friendly Helpline team on 0300 222 5800 or email helpline@asthmaandlung.org.uk. Lines open 9.15am-5pm, Monday to Friday.
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Beki is a PhD student from the West Midlands. She has several health conditions including severe asthma and Ehlers-Danlos syndrome (EDS). EDS is a rare inherited condition that affects connective tissue. Last May, Beki set herself a fundraising challenge to complete 180,000 steps to raise money to mark World Asthma Day and EDS Awareness Month.