I have an invisible illness. COPD – Chronic Obstructive Pulmonary Disease.
What COPD means to me, since I can still pass for normal as I’m not on oxygen, is that no one sees:
– sleepless nights
– pain related to strained lungs, arthritic bones, sore eyes
– the pain side effects I get from the various “treatments”
What they see is a seemingly lazy person, who appears to be able to still live independently, who still drives, and who needs lots and lots of naps.
They see the house I’ve been trying to paint for almost two years, and which interior still needs a lot of work. A. LOT. OF. WORK.
They see all the boxes from my move in October 2016, still largely packed, and moved out of my way from place to place in the house – when I’m ready to tackle another room – and have the money to hire some day help.
Offended, they see that I’m turning down offers of help, not understanding that their help comes with a price more precious than money – my increased exhaustion from dealing with their social expectations on top of getting the one task done and calling it a day.
I have a friend who loves to board game.
I like board games, too. But, I can no longer game for 7-8 hours at a time. To do so risks my safety during the drive home, so I hide my exhaustion away, and then go nap in a parking lot, out of his sight, before I am then well enough to drive home.
Once home, I put off gaming again for months, as the weather or circumstances aren’t right for me to be able to push the envelope. Again.
They don’t see all the financial issues I’m tackling, pre-paying for cremation, burial and related expenses. Paying for the lawyer to get the Will and (negligible) estate documents done, and arguing with the lawyer about the exact words I want in my Healthcare Proxy so that I leave no wiggle room for escape should I lose my mind before my body runs down, leaving me to be an unsupervised and willful child, left to play in traffic because I have no spouse or local next of kin.
They don’t see the steps I’m taking to prepare for the inevitable, and ensure it’s documented I want euthanasia and relief vs. being hooked up to machines.
So many invisible aspects involved in being a single woman, battling birth defects, and reaching the long forseen end of my time here on earth. Neither happy nor unhappy times. Merely necessary and invisible