I have been using the TIYGA Apps, Pain Clinic and Phorganiser for six months.
They are straightforward to use and provide a very useful record when engaging with health professionals as there is data, be it subjective, on which to base discussions in a collaborative engagement where the ‘Patient’ and Health Professional each bring their own experience to the conversation.
The data captured by the apps makes it much easier to identify ‘personal patterns’.
Often when living with chronic illness it is hard to identify a trigger for a better or worse period, given the numerous variables in place at any one time.
By collecting data over a period of time it is much easier to identify a ‘personal pattern’ as you ‘look at yourself’ from a helicopter looking down on a forest so can see the paths that just are not visible when you’re lost within the forest.
However, one thing I could do for myself, one act of autonomy, to use the apps – it was an act of caring for myself, the only one available to me. There was no need to consider words, the ‘pattern’ of the apps is very straightforward, on days I could not add a comment that was ok and evidenced how unwell I was as words could not be used.
The ability to capture those days of utter limitation, the days which are invisible to healthcare professionals who ‘meet’ with me every few months when I can speak or attend an appointment, was a driving force during that time, as I could choose, (autonomy is a core human need after all) to invest in my future by capturing this period of immense limitation in order to discuss it later and explain the experience to my Consultant who has no knowledge of the illness I live with, and as they are new to the hospital has never seen the neurocognitive shut down which takes place and impacts on every bodily system and organ.
The data captured by the apps opened the door to a fruitful conversation, it provided an ‘agenda’ for a Consultation in which I could explain, with examples, times, dates the impact of the illness in my life.
The apps are transferable to any condition physical health or mental health, to anyone who wants to identify ‘patterns’ in their lives, to anyone who wants to get into their helicopter to find the paths out of the forest their lives have thrust them into.
Christine Fenton, Ireland