In December 2006, I was diagnosed with Sarcoidosis, which in my case, is a progressive disease and it affects many of my organs and my joints. It is managed by medications, through injections twice a week and taking steroids on a daily basis for the last ten years.
Having a Personal assistant from OCIL has been a life saver for me. In the beginning of my journey in 2007-2009, when my joints and muscles were very painful and I was very weak, I could not manage the simplest tasks like personal care, getting dressed or preparing a meal. I was allocated a PA who was there to help me carry out the basic activities of daily living.
As I got stronger and the medication started to work, I was able to venture to taking on bigger goals like going out to do the household shopping and she would come with me to lift heavier items and pack the groceries. When we would return home then, my PA would help me put away the messages as the lightest tasks would leave me extremely breathless due to the fibrosis in my lungs.
In 2010, I was physically still unwell but emotionally and mentally I felt empowered to consider going back to work. I started to work in the OCIL office on a CE scheme on a part time basis. My role was to train the PAs in FETAC level 5 in Healthcare Support. At this point, my PA was there to help me with preparing for work and helping me on my return home when my energy had been used up during the morning classes. My PA helped me prepare meals and keep on top of the household chores. I would not have been able to do both, but having a PA enabled me to return to being a contributing member of society.
During this time, I also went back to college and studied Quality Management in Limerick University through the Disability Federation (DFI). After that, I completed the HIQA Person in Charge Quality Science course. Despite having a physical disability, my mind was 100 % and I needed to keep my brain busy!! I completed a number of ‘Train the trainer’ courses in Bowel Management, Manual Handling & People Moving, and Clamp Lift Equipment training for Wheelchair users Safe Transport. I continue to this day training OCIL and OPAS employees in these areas. I have been empowered to remain a registered Nurse with An Bord Altranais and a registered Teacher with the Teaching Council. My full focus in my career is with people with physical and sensory disabilities due to my first-hand experience with a hidden disability.
In 2014 I had surgery on my back, (a side effect of being on steroids for so long is that your joints wear quicker than normal) but once I recovered from the operation, I felt I was in a position to return some of my PA hours to the Clearing house as I felt I had improved to a point where I didn’t need the amount of hours of PA service that I initially had.
In 2015 I then applied for a full time position in OCIL and was successful. I am now the Clinical Nurse Manager of Clochan House, the residential respite unit that is managed by OCIL. Unfortunately in April 2016 I had a grand mal seizure, having had numerous minor episodes beforehand but now it means I cannot drive so I continue to need the PA hours to assist me with transport. This is invaluable to me.
Having a PA truly empowers me to live my life as independent as possible, despite the obstacles and challenges put in my path because of my medical condition. I hope the day will come that I can return to being 100% independent again but in the mean time, I am forever indebted to the PA service I receive from OCIL.