The impact of having an interstitial lung disease on my daily life didn’t register until my breathing got worse and my overall endurance suffered. I was keen on turning a “blind eye” on the problem until it got to the point where it absolutely couldn’t be avoided. Losing independence and the ability to perform everyday life tasks due to chronic illness, specifically a lung disease, can be heartbreaking and infuriating.

Through the initial scramble of trying to figure out what was happening to my body with my various auto-immune diseases and newly added breathing difficulties, I pushed myself through the pain and struggles of catching my breath. I continued to try and do the activities I had done before: going to work, coming home, doing housework, feeding myself, feeding the dogs, getting ready for the next day, and repeat. All of the normal day-to-day life requirements plus a laundry list of doctor’s appointments. I shut myself off from my body which at the time was screaming for help between my busted heels from my lichen planus and shortness of breath. I kept attributing my shortness of breath to my heels being jacked up. My lichen planus flare up ended up scraping off about a quarter inch layer of skin exposing a raw wound covering the entirety of my heels. I couldn’t wear shoes unless they were backless (in the winter) and shuffled around on the balls of my feet to prevent my heels from touching the ground and causing more pain. 

Not only did I convince myself that the breathing issues were attributed to the pain in my heels, but I also convinced myself that my breathing issues weren’t serious. I was certain my breathing would be right as rain by the time my heels healed up. Well. About six months of denial and asthma treatments alongside losing 30 pounds, I landed in the ICU for the first time. 

Eight days in the ICU, inconclusive test after inconclusive test, the pulmonologists all agreed that my breathing disorder was bronchiolitis obliterans, a rare and severe lung disease that is usually associated with postoperative transplant patients. 

After diagnosis and being released from the ICU, I tried to continue on as though nothing happened. I did treat myself to the rest of the week off before starting work again, taking off that Thursday and Friday after being released from the ICU. I picked back up on Monday, remotely at first, then back into the physical office a few weeks later. This time I was on supplemental oxygen and a trilogy machine at night to help expel the CO2 that builds up in my lungs. Even with these two initial lifestyle changes, I was in denial and continued to trudge on. My fatigue increased, my energy zapped, I was frustrated, scared, sad, and mad. My shortness of breath worsened and my body needed rest. The worse I felt, the more I realized that this rare lung disease is fatal. The slow spiral of losing who I used to be started to settle in mixed with the very real fact that this disease will kill me. I needed to allow myself to grieve. I needed to adjust to this new ‘normal’. 

One article I found during my research talked about the spoon theory as a way to describe how with a chronic illness you have to make decisions the rest of the world doesn’t have to to preserve energy. This analogy was created by Christine Miserandino and her story can be found here. 

In general, activities during the day require a certain amount of spoons to perform. Chronically ill individuals have to map out their day based on what tasks will take what amount of spoons. Once the spoons are gone – that’s it. For example, if I plan on wiping down the kitchen counters, I typically won’t be able to do any other house chores as I still need to save energy to feed myself, brush my teeth, etc. all of which take up spoons. So, kitchen counters are tackled one day and, say, bathroom counters the next or in a few days. In comparison, I used to be able to clean the kitchen from countertops to sweeping and mopping the floor in probably about the same time it now takes me to just wipe down the countertops. I need to take multiple breaks leaning on the wet counter to re-adjust my breathing. 

Even the simple act of moving from one room to the next requires sitting and thinking about “what do I need to bring with me” and “what will I pass along the way so I don’t have to double back”. On the one hand, this makes me sad. I remember when I didn’t have to think about how to be energy-efficient. And, on the other hand, I am trying to continually see the positive side of things. I am learning how to help my body and respect its needs. It can be overwhelming and stressful which definitely doesn’t help my shortness of breath, but I have found ways to cope and make some things a bit easier. At this point, I am not able to completely regain my independence, but by making certain adjustments I am able to be more independent and conserve my energy better. It still sucks. I am still mad and still cry remembering what I could do four years ago that I am unable to do now. And that is okay. But it is also important to continue to try and find solutions that can help, even if it is a small gain.