I’m so grateful to have been put forward for a gift from Ali’s Gift. Let me tell you a little bit about myself. I’m very lucky to be almost 39, but I have had my ups and downs with my health and I have found that as I get older I need to work much harder to keep myself well. I decided to have a change of career a few years ago and I gave up a very energetic job to go back to university and study for a Masters degree. Academic life gave me the flexibility I needed to look after myself while allowing me to feel that I was doing something useful. I was encouraged to apply for a scholarship so that I could be funded to do my own Doctoral research. I really wanted to combine my previous experience of working in education settings and my knowledge of living with cystic fibrosis (CF) in the form of a research study. I decided to propose a study that would look into the educational experiences of children and young people with CF. I was successful in gaining the scholarship, and now I’m just coming to my final months of writing up the research, which I hope might improve educational support for children with the condition.
Those that do not know anything about CF might say ‘so what?’. CF is a condition that is so challenging and yet there is little awareness of it amongst the general public. It is very difficult for people with CF to explain why living with CF is hard work. Most of the difficult aspects of living with CF take place behind closed doors, and this does not help others to understand it. In trying to explain CF I could tell you about the time consuming treatments I must do: hours of physiotherapy to clear the lungs, several nebulised treatments to help me breathe, handfuls of tablets morning, noon and night, regular courses of intravenous antibiotics, inhalers, nasal sprays, nutritional drinks. I might also mention the symptoms of CF: the constant coughing, the breathlessness, tummy pain, unpleasant digestive problems, sleepless nights, treatment side effects, joint pain etc. However, I’m not sure that mentioning my CF treatments and symptoms actually paints a picture of how difficult living with CF can be.
I suppose the difficulty comes from trying to live a rich and full life in spite of CF. But life with CF brings other issues. CF makes you fearful about your future. It’s wondering if you will see the milestone birthdays that other people complain about reaching. CF is about having your plans disrupted due to being ill – the holiday you wanted to go on, the party you bought that new outfit for. CF is about people having lowered expectations of you. CF is worrying that your parents might lose another child. CF is logging into Facebook and seeing another friend has died from respiratory failure. CF is the guilt you feel for surviving your friends and wondering why them and not me?
People with CF face a range of difficulties that extend beyond simply living with symptoms of the condition or managing extensive treatment routines. Yet, the challenge of everyday life with CF can go unnoticed by others because of its invisible nature. That is why it is so fantastic that Ali’s Gift acknowledges the hard work involved with having the condition and the achievements that can be made. I had a wonderful and relaxing spa day for my gift. The day gave me the opportunity to unwind and forget about my CF and the stress of looking after myself for a while. I am very grateful to Ali’s Gift for the spa day and I felt incredibly spoilt!