Adulting My Way Through A Chronic Illness

I love the fourth of July.  Mostly because I love fireworks, quick glimpses of art shooting into the sky, spreading out and then fading before you can catch your breath. I also love that there really aren’t any expectations associated with the holiday.  With that it should come as no suprise that last weekend I found myself so lost in excitement for the holiday weekend and upcoming fireworks, I decided I would walk to the park by my home and watch the sunset. In case you are wondering it’s .4 miles per google maps.  I’ve not been able to walk there this year because of flare after flare, but as I mentioned I got lost in the excitement.  As an adult I really should have known better, but I didn’t think forward enough to what the ramifications could be and off we went.  The sunset (pictured below) was beautiful.  We sat for about a half hour and then ventured home.  I knew I’d overdone it as we neared the house, my legs felt near collapse and my head was spinning and filled with so much pressure. But it felt worth it, would I have done it again if I had a take back, probably no, but still what was done was done.


The next day I felt the flare creeping up on me, ready to take me out at the knees.  And then bam, just like that I was down, the day before the fourth.  Also an hour before an appointment… As any chronic illness survivor understands, you begin to haggle with yourself. Maybe it’s just a slump, I’ll just drink a bunch of water, or consume honey, or fruit for the energy.  I can’t possibly cancel at the last hour… So I pushed myself a little further and went to the appointment. At this point I knew I was on borrowed time. My adrenals giving me anything and everything they had to get my there and home leaving my body shaking in fatigue.  That night I drifted off to sleep feeling a bit like a warrior princess thinking, well I survived the day. This, of course, was followed by intermittent sleep, which resulted in finally waking up to what felt like a tequila hangover. But still I haggled, I’ll just lay here all day, not move and that will give me the energy to ride in the car to an area where they have several shows going off at once.  I can and will do this I said to myself.  But as the clock drew nearer and I literally felt like every part of me was one with the bed I knew, it wasn’t going to happen.

Plans were then rearranged, which resulted in a five-minute car ride down the hill to watch the nearby fireworks from the fair in a parking lot behind a grocery store.  And you know what? As I sat there, slumped a bit, leaning my head back for support, I realized I couldn’t stop smiling.  I made it and they were beautiful, the flashing was a bit overly stimulating, but the colors, be still my heart. In those moments, my brain was lost in beauty and it was wonderful. I may have failed at adulting here and there this past weekend but in the end, I pushed through and now I will rest for however long it takes, no seriously I really will, I promise. 🙂

I’d like to close this post by sharing my last ‘well’ memory (pictured below). It was actually on the fourth of July in 2014.  We had spread a picnic blanket on the beach and were seated in a perfect spot to see the fireworks show from the fair, the weather was beautiful, we were drinking/sneaking champagne :), enjoying every little bit of life in that very moment. I sometimes wonder, if I had known that that would have been the last bit of fun I’d have, like that, for years to come would I have done anything differently and the answer is no, it was a perfect evening and I’m so thankful to have it to reminisce upon. Now back to the business of adulting…I will rest.


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