Living will an illness was never something I had planned at 19, but now, it’s something which affects me every day.
Diagnosis was a lengthy process. In January 2015, during Christmas holidays, the appearance of a familiar chesty cough recurred, which had previously always been put down to chest infections. However, this time it came with a handful of symptoms which left me with very low energy and generally very unwell. I visited doctors many times, who again said it was a very aggressive infection in my lungs. Due to this, I was unable to attend school full time from January through to sitting my GCSE’s in May and I missed out on a large amount of vital school time. In spite of this, I still completed 11 GCSE’s and achieved A*-B grades. It was unusual for an infection to last so long, but we didn’t question the diagnosis and so continued taking antibiotics.
Between Summer 2015- Summer 2017 everything feels like a huge blur. Everyday was symptomatic with the first problems being a deep routed, chesty cough, coupled with exhaustion and headaches. Later, more and more symptoms appeared, whilst basically living with a constant infection. During those two years I had so many tests; CT scans, X rays, blood tests and lung function testing to name a few. Most tests came back clear, which was obviously relieving, but also frustrating. During a period within this time, it was also believed by certain doctors that I had a ‘habitual’ cough, and was coughing because it was now what I was used to. The doctors trips were relentless until finally, something came up.
I was diagnosed with a lung disease, which causes my bronchi to be of abnormal shape. With each time an infection is present, the bronchi get wider, more abnormally shaped and more susceptible to infection. So it’s a vicious cycle of infection, and doing everything to keep infection away. Exhaustion is a huge symptom due to breathing abnormally and therefore using more energy doing everyday activities. Infections sit in my lungs and secretions are hard to clear, which again leads to more infection, including pneumonia and flu.
Having this illness comes with many aspects which I’m not happy talking about. Having to call my boyfriend to help me shower, just so that I don’t faint. Having to hold back from socialising, just in case I feel unwell. Spending so much time on my own, time sat in bed and in the dark because I can’t do anything else. Being awake all night because of pain, suffocation and worry. Having a constant battle between putting myself first, or doing what others think is best. Living with it can be hard.
Although it sometimes seems overwhelming, having an answer is the best way to get better. Since being given a name to my symptoms, effective treatment has been beginning to take place. I have two specialist respiratory doctors, as well as a GP, physiotherapist and immunologist, who are working to find the best relief to my symptoms. After years of uncertainty, diagnosis is great.