I am in the middle of yet another batch of useless paperwork for the insurance company. They want me to explain my very existence, and why I “deserve” to receive matching salary benefits.
Having to justify my very existence creates a mania within me of highs and lows, self-doubts and anxiety, and anger. Lots and lots of anger.
After 5 days of trying to explain my limitations, I have settled on the following answer. The lawyer will say it’s too much, not enough, whatever. But, I’ve gotten it done.
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Hobbies / Outside Activities:
As my work history demonstrates, I used to work long hours at multiple jobs, with energy left over for necessary chores and a side crafting business. I began to notice that I tired much more easily after a work trip to China (August 2009), where aggravation of my underlying birth defect left me coughing up blood and crud from congestion during most of that trip. Following that trip, my breathing capacity and oxygen saturation began to drop. While I have always dealt with breathing difficulties and pain, now it is a daily nagging companion.
Due to my birth defects, I have always had trouble with enough stamina to lift things and move, or run. I used to be able to push through those episodes and risk being sick but still recover after a relatively short down time. Now, I tire much more easily. I can sleep whole days or weekends away. I need to schedule rest breaks. I need to space out my socializing with friends. I need to spend down time resting after a push to pass for normal and avoid others hovering and worrying.
When bowling, I have had to suck it up and ask for a “child’s ball” / explain I’m handicapped, as I just can’t lift and throw the weight of a normal adult bowling ball. I still travel and try and pass for normal, but I’m napping in my car or anywhere I am as I can be sick anywhere, as there are chairs and beds worldwide, but I will never get that particular moment back to live my life to its fullest potential before I run out of time, or my stamina and abilities decrease further.
As anyone does when struggling to live a healthy life, I’ve incorporated a variety of aids. My favorite exercise, swimming, has now become embarrassing. Like a child who doesn’t know how to swim, I’m now always wearing a float belt, as a lung or back spasm can strike at any time, leaving me floundering for air and at risk for drowning. Coaches want me to swim without the float belt as they are focused on tightening my core or some other nonsense, and it’s embarrassing to have to explain to strangers why the belt is there and why I’m not in a “special ed” swim class (they mostly don’t exist). When snorkeling, I use a snorkel designed to help people with lung problems avoid exacerbations and water inhalation, and I’m out of the water much sooner as I get sunburned and chilled much faster than I used to from lack of stamina as well as the photosensitivity of medicines that I take to remain healthy.
Being confronted with my health reality and having to talk about my change in abilities irritates the crap out of me. I know what abilities I no longer trust or have outright lost, like horseback riding. Still doing as much as I can when I can, but I run out of energy and patience with others well-meant intrusion, and usually need extra rest, which alarms them. I *hate* being helped and hovered over.
I know my own competitive nature is my biggest curse. The very thing that allowed me to work multiple jobs and succeed in the working world is a curse, too. I hate admitting I can’t do something or keep up, so I have to be careful when socializing to not push myself into feeling worse by trying to hide my exhaustion. When I was still working, I loved contributing goods and services to many worthy causes. I miss being able to contribute and help others. However, I learned my limitations during one of my “day of service” projects which involved weeding a hillside in South San Francisco. As a gardener, I thought we’d be driven / drive to the spot, and then weed. Surely, I could do that and have fun with my co-workers? Instead, we had to hike an hour, uphill, before we ever reached the weeding location, and I cannot / do not hike. However, I was there so I wasn’t quitting. I was humiliated to have it confirmed in front of others that I couldn’t keep up (October 2014). It was distracting for the organizers to worry about me, and it was a point of fury for me that my body was failing me. That event demonstrated to me that I was no longer safe or steady on my feet if I pushed myself while trying to keep up appearances. That event, plus multiple car accidents from pushing myself to keep up when tired, also pushed me to seek additional medical assistance from doctors to try and figure out if there was anything more that could be done to help me regain my stamina, fight brain fog, sleep well, and deal with my breathing frustrations (there wasn’t). That effort, however, ultimately lead to my COPD diagnosis being confirmed in black and white.
Mostly, I do much of what I used to do, just at a much slower pace and over a longer period of time. I often wake up, spend a couple of hours in the bathroom dealing with those daily morning issues, and then am freezing cold after being up for a few hours. I can get chilled on the hottest of days, which makes me very sleepy and forces me back to bed to try and warm up.
I *know* all of this, and concentrating on what I cannot do any longer leaves me in a state of angry mourning that isn’t healthy for my overall well-being, so I simply try to avoid thinking about my limitations.
I’ve now taken to wearing a fitbit to try and keep moving each day, as the tiredness can be endless. I am very aware that sitting around will kill me faster. The newest pain with a liver issue is also keeping me less active, and it’s adding to the overall hassles of my chronic health conditions as I’m very aware that I must move and participate in the world to remain as healthy as possible, but I also can’t be too far from a bathroom. The aggravations with this disease are endless, and I prefer to avoid thinking about my limitations.
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I’m not holding my breath that this will help (ha, ha), but I got it done. Win or lose, I’m getting through the b.s.