Things will get better given time. Right now, though, I can’t seem to get out of my own way.
The lawyer has taken up residence in the back of my brain, not yet quitting my case (although he earlier threatened to do so), and he’s making me crazy challenging everything I know about myself and the disease because I don’t fit his expectations for what “disabled” looks like.
Into this pity party comes life, and I must thank Russ Winwood for his latest blog as it was just the kick in the pants I needed to remember to get out of my own way:
Like Russ, I’m dealing with doubters and distractions from personal challenges to my routines and exertion efforts because I’m not supposed to be able to do the things I’m doing with only 26% lung capacity. And yet, I do.
I don’t have any magic beans. I don’t have any silver bullets that will make COPD’s impact on my life go away. I can just do more (and less, compared to Russ) when looking at the bell curve of what’s possible for my level of this disease.
People should be happy for me to be able to not be on oxygen. Not be on a scooter. Not be totally dependent on caregvers for help. And yet, they are not. The, “You don’t look sick enough” challenges continue…
While I do struggle, for many people I’m not struggling enough. I’m not visibly sick enough. I’m not incapacitated, so I should keep on working until I can’t do anything at all except sit and breathe for 24 x 7 x 365. Or, kill myself or someone else because I’m trying to keep up and and shouldn’t be behind the wheel due to my level of tiredness with this lung function.
My ability to push myself for 2-8 hours in a day without causing injury to myself or others seems to be an indication that I’ve been misdiagnosed. That the numbers are wrong. That I’ve somehow found a way to cheat the system to fake having COPD.
Using my fitbit (a birthday present to myself) shows exactly how things go for me for activity levels:
It took forever to get the fitbit out of its package and set up, but by the end of the day, I had the hang of it. (The goal is 250 steps in an hour – you can see how seldom I reach that goal).
Saturday, 9/24 – a friend was helping me paint, which also helps kick in my competitive genes:
As you can see, better levels of movement, and some actual “burn” time (the yellow spikes of activity around 4pm – I believe we went to lunch, LOL).
As you can see, more down time today, as I’d found the lawyers email, saying I was “too active” and needed to stop or quit my lawsuit (major downer, putting me into a funk, and causing way too much time to be spent on the computer getting back to him vs. being over at my place painting). Another friend came to help me today, so I was able to get my overall steps up, and show some yellow “burn” time about 3-3:30, but I was still wiped out by 4pm. The friend was gone, and I was back to being sunk in a funk, doing clean up and heading home.
Monday, September 26:
Planned paperwork day, attending a seminar on health care proxies, disability and estate planning. Did some packing, but mostly waiting to hear back from the lawyer about whether or not I’d been fired from my own case.
Tuesday, September 27th:
The fire in the Santa Cruz Mountains (near my new home) puts crud in the air, keeping me away from that location in order to be healthy, plus the need to take it easy today doing light packing so that I will have energy tomorrow for going out in the evening, shows up in my level of movement. Sad.
So, today, I am re-energized by Russ’s post. I am determined to get things done and get back to my 7k+ goal for steps every day, despite the lawyer’s raining all over my parade.
Life may get me down, but I refuse to remain demoralized for long. There is nothing and no one that controls my attitude problem but me, and today I am choosing to be resilient and get on with life despite those who would tie me to an early death through preventing me from trying.
I’m not dead yet, so I will continue to try my best to find the joy in each day, and ignore the Donny Downers of the world. Movement is life, and I can’t be anything but what I am – someone who is full of life despite my birth defect and related diagnosis.