My name is Patricia Giles, I love my job and I love spending time with my family and my dog, Bella. I don’t have any children, just a step son as I cannot have kids. I’ve been married to my husband, David for 18 years in 2018.
In 1986 I was diagnosed with lupus and up until 2013, I was doing fine. It was in March 2013, at age 43, I went for an ultrasound on my stomach due to the flu and they went a bit too high and found the deterioration of my lungs. I was sent back to the x-ray place 20 minutes later to have a MRI where they diagnosed me with Interstitial Lung Disease (ILD).
I didn’t think I had any symptoms of lung disease – just a cough and feeling lethargic, which my doctor put down to my lupus and the flu.
I was getting more and more tired all the time and had two seizures due to pneumonia. I couldn’t walk anywhere because I was always out of breath and this is when they diagnosed me with Pulmonary Arterial Hypertension (PAH). Now I’m still tired all the time but I make myself go to work as this is the only way I deal with what I’ve got. I have a great husband who supports what I do and a great boss who does his best to make sure I am fine.
When I was first diagnosed, I was numb. I had no information about lung disease and no idea where to get it from.
After a while I realised there were people out there that were worse off than me so I just dealt with it by throwing myself into work. This worked for a while until I got more sick and realised that I had to cut back work as I doing about 60 to 70 hours a week.
When I was diagnosed with PAH I thought, ‘why me, what have I done to deserve this?’. But I kept going and I still am. I know there is nothing they can do for my conditions as none of them are curable and I am classed as severe but I still have my family and my work. For how long I can work, I don’t know – my boss said as long as I want to come to work he will have me there. I will just keep going till the end, which is all anyone can do in this day and age. There is no point in getting down with it as there is nothing that can be done.
I experience stigma all the time from people saying, ‘you should not be doing this or doing that’ but I see it this way, if I can do it, I will – simple. I am a very stubborn person so to tell me I cannot do something doesn’t sit well with me.
Living with PAH affects what I do day-to-day, even when I sleep, as I cannot breathe properly. I am trying to access my superannuation to get the oxygen machine to be able to work, exercise and sleep better. At work I have two flights of stairs to walk up which is difficult, but I do it. I get out of breath walking from one part of the house to the other and I am always tired and sore, but this is a part of life now for me so I deal with it the best way possible.
When I was first diagnosed there was nothing and I looked for five years before I found the support from Lung Foundation Australia. When I was first diagnosed not even the doctors could tell me anything, only that is was from my lupus.