Daily Prompt: Invisible

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via Daily Prompt: Invisible

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

 

5 thoughts on “Daily Prompt: Invisible

  1. And yet you still accomplish so much every single day. You care for an ill dog, who isn’t yours. You are friend to some people others would cast by the wayside and never look back. You go to your friend’s home and board game a little bit. You’re not invisible. And once again, you’ve shared a nugget of information that I needed to ‘hear’….the lawyer ‘tool’ in preparing all those documents that ensure, sans a spouse or children or related kin who know our last wishes; ensure those singles of us a peaceful end. Well relatively…

    Liked by 1 person

  2. 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.

    O*M*G!!!
    I so completely “GET IT!” There is tremendous cost in accepting the help! I know my friends mean
    well—- I do not take their love or faithfulness lightly OR for granted!
    Yeah BUT***
    I KNOW HOW I want things done.
    I KNOW WHAT TOOLS I want used, brand, size and color!
    I AM AWARE of the ALTERNATIVES available!
    Yeah BUT**
    They do not know the fumes I cannot allow or just how long I can go without a snack OR WHY I cannot eat the lovely Old Fashoned Cruellers they so *thoughtfully* brought to this wall paper game….
    AND when I say we clean up and call it a day for my scheduled NAP, that this is a “requirement* for my health and not a luxury…..
    I am exhausted just considering the combination of conversations possible and the desr friends I potentially lose whether I explain clearly or at all.

    I truly DO, *Get It!*

    Liked by 2 people

  3. Oh, Suzz – if there was one thing I learned loud and clear from my Mom, it was LISTENING to the person you’re trying to help, and doing exactly what they want, without suggesting anything. We used to laugh over my siblings efforts to help, and their substitutions.

    Not slamming anyone, but if she wants Nissan White Bread, don’t bring her butter-topped whole wheat. Don’t bring her 2% milk instead of whole milk. Don’t bring her egg beaters instead of actual eggs.

    People mean so well, but they just don’t get how very exhausting they are when they are trying to help someone accomplish something that they are unable to accomplish for themselves. As long as the money holds out, it’s so much easier to pay someone to go away after the task is done (yes, I’m quoting Charlie Sheen. Crazy, right?).

    Liked by 1 person

    1. Good ol’ Charlie said that? Wow! I like it. When I was caregiver of my mom, I did a certain amount of arguing and knowing better and was full of suggestions for her, often not taking what she said she needed or wanted very seriously.
      We went head to head in the ring and we both *needed* to be right.
      Today, I give karma some weight, and although I do not feel punished at this point in my life, I smile and think of my mom often when a good friend makes a suggestion or starts a sentence with “why doncha…. OR I know a better place, size, type or flavor of… FILL IN THE BLANK”
      I hope I am a more tolerant patient than she was but there is this DNA thing going on….

      Liked by 1 person

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