I originally wrote this post at the start of my journey on disability: Da, da, dum, dum...
18+months later, I’m still struggling with the issues I originally raised for how to deal with the mental games the insurance company and society plays vs. being honest with yourself and your doctor in setting your expectations accordingly.
So, it is with perspective that I write to update my blog about then vs. now for energy levels and mental adjustments needed and revised. I started this journey with a lung capacity of 31-32 percent, and I have devolved down to 26-27 percent, but I’m continuing to hold my own as my oxygen level seems to have stabilized at 96% on good days.
Originally, the insurance company took the position (after my employer’s company granted me benefits) that I was not ill and had not “earned” the benefits that I’d paid into during my 42 years of working life, and refused to pay out the benefits. Thus started the 18 months worth of effort in disputing this refusal of benefits, eating into my personality despite the reality that my birth defect was getting worse as my Asthma devolved into COPD.
It’s been a huge series of changes and adjustments, with a great deal of fighting along the way.
I’ve had to scramble for money. I’ve had to fight to find an affordable place to live (and, horrors, am now a homeowner with all those related financial disasters looming as the house needs maintenance and repair). So, I could not be anything like the convalescent invalid that they seemed pre-disposed to demand from anyone claiming disability… I am your single, liberated woman disabled person, determined to make the most of my life independently for as long as I can manage things. Naps are essential. Naps consume whole days.
But ! I refuse to let life pass me by while also accepting that things must change as I can no longer work each day and maintain any kind of work / life balance as most physical things, things requiring endurance, are beyond me to sustain.
Rather, I am an active invalid, sleeping any time, anywhere, as I fight to keep active and enjoy my life as much as possible for as long as I can remain active. Sleeping in my car while doing errands (when sudden exhaustion or tiredness hits) is the new normal for me.
Being good about planning my day to keep a day of rest between activities is also essential.
Wanting to remain active, and not wanting to endanger anyone when I’m behind the wheel by driving tired, I’ve gained the ability to sleep any where, any time, and do it safely. (Important: Crack the windows for air on hot days, but don’t leave them open as you are very vulnerable when you sleep).
Gustave Leonard de Jonghe caught my version of disability best, in his picture of “After A Walk”:
So, as we continue this journey into disability, the insurance company and me, and I have finally won my benefits, I am continuing to challenge them about their notions of what are reasonable pre-conceptions regarding individual abilities while still being disabled, and what is out-and-out ridiculousness.
It’s getting easier to wrap my head around my need to be an activist for my reality. Frustrating, but easier. I am more than a label, and I’m not dead yet. Don’t restrict my movements in order to prevent me from remaining as healthy as I can while in reality I slowly decline.
(1) Felix Edouard Vollatton = Laid Down Woman Sleeping
(2) Gustave Leonard de Jonghe – After A Walk