An Unexpected Difficulty of Pulmonary Fibrosis.
Its no secret that having a chronic illness complicates the lives of patients living with the disease, and this unfortunately includes pulmonary fibrosis (PF). Since my own diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, I’ve been consistently learning and making adjustments to what I can still do despite my disease, and what I no longer can. While some of these adjustments are visible and obvious to others (ie. no longer being able to play hockey), there are unfortunately many different invisible or unexpected difficulties that also come from living with IPF.
For me, one of the most challenging things I am now having to deal with as my IPF worsens is the struggles I face with “brain-heavy” tasks that require a lot of thinking or focus. Unless I voice how hard it is, no one is able to know that I now have a hard time with many mental tasks. I never had this trouble before my IPF diagnosis, so I can only attribute these difficulties to this disease. There are a number of reasons why I struggle with these types of tasks, here are just a few of them:
- Brain Fog: my amazing fellow columnist Kim Frederickson wrote a column about the struggles of brain fog for patients with PF back in May 2018. Until she did this, I didn’t know how real this was for patients and unfortunately this is one of the invisible and unexpected difficulties of this disease. Like Kim states in her column, I also feel as though I now struggle to think things through clearly due to the mental ‘fogginess’ I feel on a regular basis.
- Short-term memory difficulties: this ties into the confusion I have with multi-step instructions as well; I simply struggle to remember details of what was just discussed in a meeting, as an example. This is really tough for me, and to an extent I find it embarrassing even though it isn’t my fault and I’m not doing it intentionally.
- Staying focused: when I get tired during a long meeting, that is unfortunately all I can think about. I lose my ability to stay focused on the task at hand and my mind tends to wander. I can no longer fight the fatigue or force myself to focus. As a result, I dread long meetings and feel anxious about them in my workplace. My preference is to keep meetings to an hour so that I can hold my focus the entire time, however, I know this isn’t always realistic.
Can you relate to these struggles as a patient living with IPF/PF?
Do you notice these types of tasks have become increasingly difficult for you as your disease progresses?
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