Work and the Spoonie – Stream of Consciousness


For Stream of Consciousness Saturday sponsored by

Your Friday prompt for Stream of Consciousness Saturday is “the last piece of mail you received.” Talk about the subject of the last piece of physical mail you received, i.e. a gas bill–talk about gas, not the bill itself. Have fun!

The last piece of mail I got was a 1099 for work I did. My subject is working as a spoonie.

Work and the Spoonie

One of the hardest parts of chronic illness, for me, has been the loss of meaningful work. For many years, I did not work to live, I lived to work. Then came the disease and the lung problems, the heart problems, the skin problems, and the back breaking, soul-crushing fatigue. I semi-retired at the age of 49.

You see, I’m one of those people who fall through the cracks. I’m not sick enough to be considered disabled, but I’m too sick to work full-time at anything that would actually support me. So, I retired and lived off my savings. For the past 12 years I’ve taken little jobs here and there; a little this, a little that. Temporary, seasonal, part time positions, volunteer positions, and my own little consulting business. A few years the accounting consulting did pretty well, but honestly it exhausted me to the point I had to take several months off after the job was finished.

Being a spoonie is so much a life of walking a thin line, sometimes a thin, ragged, line. You have to balance between doing as much as you can, to help support yourself and keep your mind working and active; and doing so much that it leaves you sicker than you already were. I teeter a lot, I push too hard then I have to back off, I skate along the edge for a time, then I push too hard and topple over. Get back up and start again.

Don’t get me wrong, this 1099 is a vivid reminder of how lucky I am. That I can work, even a little bit. I will take it for the blessing that it is and be joyful today for all that I CAN do, and not worry about the things I can’t.

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Til next time ~Peace ~JPP

4 thoughts on “Work and the Spoonie – Stream of Consciousness

  1. Eeek. Empathy for you. Freaking out for me. With your list of complaints and you don’t qualify for disability? I’m in the process of applying now, the clock is ticking, I don’t have savings to live off of, and I will be facing homelessness, possibly even WITH disability. So, I totally get your post. (I need to go breathe into a paper bag now.)

    Liked by 1 person

    1. Thank you so much for your empathy. My case is kind of odd. Sarcoidosis is fairy rare at least with multiple system involvement. It is referred to as a “snowflake” disease because every case is different. This makes it almost impossible to quantify the level of disability. I don’t have quite “enough” damage to any one system to be “completely” disabled and disability due to fatigue is an uphill battle. Based on loss of lung, heart, and joint function, I’m still “functional” and I am. I still work a little here and there and I managed to stretch that savings to (mostly) support me until I became eligible for retirement benefits. My partner and I made massive life-style changes but that’s a different topic. Thanks again for sharing your thoughts and I’m sending you good vibes that all goes well with your application. 🙂

      Liked by 1 person

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