Just because a person gets sick, does not mean this go, go, go mentality suddenly stops. The body requires a slower pace but the mind may not recognize this. In order to enhance quality of life and reduce stress, this new mind/body dynamic must be approached consciously.
After 30-something years of grooming myself, dressing, having breakfast and starting my day, I had become comfortable with my routine and the time it took to do everything. When I was very ill, like a broken record, I couldn’t seem to get it through my head that things had changed and I became chronically late for everything. I hate to be late. At some point I had to face facts: now the simple things had become quite difficult and my daily routine had new elements that needed recognition.
Taking a shower was no longer an option because I couldn’t stand up in that kind of heat and still be able to breath. I had to switch to baths and baths, by nature, simply take longer. After my bath, I needed time to recover from that exertion. Usually I would spend around fifteen minutes either laying down or sitting at the edge of my bed. I needed this time to catch my breath and refill my energy’s “gas tank”. When you become ill, the body no longer has the same level of energy it once did. I could feel the energy being drained from me doing ordinary tasks. I called this energy reserve my gas tank and could clearly visualize when it was full (rarely!), when it was being drained (and by how much) and when it was empty (often!). Like the life regeneration you will find in a common video game, it takes time of stillness and quiet to refill the gas tank. It became essential for me to integrate these times of regeneration into my daily routine.
To dress myself, I had to split the task into parts. First, I opened the drawers to the dresser and then had to pause for breath. Bending down to open the drawers was an effort. After catching my breath, I would pull out the pants, underwear and shirt I wanted to put on. I would take them over to the bed and again pause to catch my breath. Sitting down, I would slowly dress myself, trying to be conscious about going slow. My mind would often forget the limits of my body and I would perform an action at “normal” speed and pay the consequences with a lengthy recovery. It was astounding how difficult it was to remember to go at my body’s pace, not my mind’s.
After I would complete dressing, I spent more time regenerating and gearing up to move back into the bathroom. In the bathroom, I faced some of my most difficult challenges. That is where I brushed my teeth and my hair. The raising of my arms for that length of time was very hard and caused me to get severely out of breath. There was a lot of time spent resting and catching my breath during those two tasks.
The next step required a long trip from the bathroom (located in my bedroom) to the kitchen. I had developed a mental map with different resting spots, I called them “stations”, along the way. Once I reached the kitchen, there was often a need for a long regeneration period at the kitchen table. This could take as long as a half hour. Once I had caught my breath and felt strong enough to stand, I made my way to the cabinet, pulled down a mug, filled it with water and put it in the microwave for 1.5 minutes. This time was another opportunity to sit down and rest. When the bell went off, I wasn’t always able to get up at that moment and would feel pressure to recover before my water got cold again. Sometimes, I wouldn’t make it in time and I would have to reheat the water and try again.
Once the water was hot, I put in a tea bag and made the decision of whether or not I had the breath to walk over to the trash can to dispose of the wrapper. Often, I left it on the counter, deciding it wasn’t worth the trip.
Next came the even longer trek to the living room, again taking time to pause at different resting stations. It was often a great effort to make it to the couch and when I did, it felt like a victory. I set my tea down on the coffee table in front of me and took all the time I needed to recover while watching morning television. By the time I had caught my breath, the tea had cooled down enough so I could drink it. This felt like an affirmation to the routine’s strategy.
When I had finished my tea and it was time to go out (usually to a doctor’s appointment) I gathered what energy had accumulated in my gas tank for the hardest task of all: filling my oxygen tank. At home I was hooked up to a compressor, a machine that took the oxygen out of the air and delivered it to me via nasal cannula but when I went out I had to carry a small refillable tank. The refilling was the hard part.
The large liquid oxygen tank was in the hallway outside the living room door. Next to it were the small tanks for filling. I had to get to the hallway, pick up a tank (not very heavy) and place it precisely right on the top of the big tank. Then, I had to lean with all of my might and weight (all 78 pounds!) so that the oxygen would pass from the big tank into the little one. This always left me panting and feeling weak in the knees. I took that opportunity to remove the compressor cannula and replace it with the portable tank cannula and crank up the oxygen level. Leaning on the tank, I took slow even breaths to regain my composure and begin the journey back to a place to sit down.
It is no wonder that I was late to things. With all of this extra effort and time needed to refill the gas tank (and oxygen tank!), I usually added an hour or two onto my “normal” regimen. It wasn’t until I got realistic about how long things took that I started making my appointments as late in the day as possible and planning appropriately so I had a chance of being on time. I became conscious of my limits and therefore was better able to strategically set out to accomplish my day with the least amount of stress and hurry.
Quality of life. This is a huge issue when you become ill. There is so much that you have to give up. There is so much that you miss out on. I found that sometimes, to fill my soul, I had to plan on overdoing and paying the consequences.
My favorite singer was coming to town and my mother arranged, through The Fairy Godmother Foundation, for a meeting before enjoying the concert. They also gave me and my companions a limo ride and a stop off for dinner at my favorite restaurant. This was a very special night. This was a night I would never forget and a night that I was way too sick to participate in without repercussions. There was no question in my mind that it was worth it however, so I began the plans to overdo.
The first step was to clear my schedule two days before and three days after. I made sure I had no doctor’s appointments and asked for help with meals and other daily necessities during that time. I rested and rested and rested before the concert. That night, my big oxygen tank was loaded into the limo and my friends and I set out for fun.
Dinner was wonderful. Meeting my favorite singer was awkward but sweet. The concert was just what the doctor ordered. I stood the entire two hours and sang as loud as my crappy lungs would allow, I knew every song. I was flooded with happiness and drank up every minute. When the lights went down and the concert was over, I felt like I had been hit by a truck. My friends helped me to the limo and as soon as I we got home, I crawled into bed with all of my clothes on. I stayed in bed for the entire next day. I did not bathe and I only partially removed what I had been wearing. I was exhausted and fulfilled. I was able to get out of bed the second day but still did not have the energy to bathe. By the third day, my tank had enough gas to wash up but I still needed naps and more rest.
I paid the consequences that I knew were likely to come from that one night out. It was worth every minute of my three day recovery. I had filled up with joy and had an experience that would always be close to my heart. Through the fatigue, I could still feel the pulse of the music and, there was no doubt, I had made a fair trade.
When I was healthy again and had my new set of lungs, I completely abandoned strategic living. Consequently, I found myself in undesirable situations. I was going to work all worn out. I was trying to write at times when I was at my least inspired. I was lacking balance and therefore neglecting parts of my life (like Jason) in pursuit of some lofty goal that, in the end, wasn’t really important. I had to start taking the lessons of my severe illness and applying them to my healthier life.
One night I was at a party with a bunch of old friends. I was visiting and had to leave the next morning for a long drive home. At home, I had a lot of errands and chores that needed to be done before that Monday in which I was scheduled to work an 11 hour shift.
The party, as so many parties do, started getting more interesting as the night wore on. I was getting to know new people, fascinating discussions were cropping up and those with a few too many drinks were becoming quite entertaining. I really wanted to stay and see how things played out but I had promised myself I would leave at midnight. When midnight arrived, I began to negotiate with myself the prospect of staying another hour or two. Immediately, I envisioned myself at work on Monday dragging and sick with fatigue. Even as healthy as I was, my gas tank still had its limits. I knew it was time to say goodbye and take care of myself.
Pulling my self away from the party was difficult. My friends teased me about leaving so early and tried to get me to stay. I stood strong, despite my inward protests, and left at 12:05 am. On the way back to my hotel, the fun of the party faded behind me and I could feel how tired I was. I looked forward to sleep and felt a sense of pride that I was able to override my immediate desires in favor of my future well-being.
The next morning, I awoke refreshed and went for the farewell breakfast. Some of my friends were still sleeping, most of them were hung over and all of them were tired. I was not standing in judgment of their choice to stay at the party, but was relieved to not be in the same situation. I found that the stories of the party were equally as fun as being there. As difficult as it was to extract myself the night before, I was glad I didn’t stay.
I drove home with a clear head and went to work on Monday with plenty of energy in the tank. I think of this trip often and try to hold onto the lessons I learned when I was so sick, the lessons about being conscious of one’s own limits and health strategies. I’ve learned that self care feels really good and is a strong component to self-love.
The realities of illness can be difficult to accept and incorporate into one’s life. The fact is, however, the sooner you are able to adjust your daily expectations, the sooner you will be able to develop strategies that will help you move more efficiently throughout the day. To do this, you must know yourself, your limits and your needs. Nobody will create a system for you that will maximize your energy and schedule; this is up to you. Nothing is more frustrating than trying to accomplish what you did when you were healthy in the same way now that you are sick. Likewise, the lessons of conscious living and strategizing can be very satisfying when you are of sound body. The bottom line is to know yourself and love yourself enough to think ahead so that you might live life with as much energy in that tank as possible, and with the highest capacity for joy.