Spoonie, Interrupted

If you’re a Spoonie, you know what it’s like to live life with only a fraction of the energy and mental clarity you once had. Those born with chronic illness might not even have clearer days to reflect upon.

So when a family member or loved one gets sick or passes away, where do we find the strength to deal?

If you’re blessed with supportive loved ones who have their acts together, i.e. don’t have their own illnesses (chronic or otherwise) to contend with, you still might find this helpful. If you’re more like me and everyone you know either has their own chronic illness or are chronically unable to cope, then please, read on and share your own coping mechanisms.

Over the past year, my dad suffered a massive heart attack and died for forty-two minutes. He was in a coma for a little over twenty-four hours after, and the doctors were uncertain how responsive he’d be if and/or when he awoke. Fortunately, he’s still alive today, almost 6 months later, mentally as stable as he’s always been.

During his 3-week stint in the hospital, followed by 2-weeks in a rehab facility, I drove back-and-forth across town at least a dozen times, and when I was in too much pain or my migraines effected my vision too much to drive, I still had to cram my pained body, riddled with arachnoiditis, spinal stenosis, fibromyalgia, and skull-cracking migraines, into a car for over an hour in each direction. These trips MORE than exceeded my “spoonie energy limits” for months in advance, not to mention my responsibilities as a mother.

Shortly after my dad’s near death, my mom went into kidney failure. That, combined with sepsis and the weakened state of her COPD-shriveled lungs, led the doctors to inform us that it was only a matter of time till she passed. But she didn’t…she went home!

BOTH my parents experienced more than one miraculous recovery since, all within the past year. And as grateful as I, my kids, sisters and brother, and husband all are, we all grieved them…and more than once.

After so much time spent accepting my parents’ (and helping my kids accept) their grandparents’ soon-to-occur deaths, it no longer feels real when I hear the words, “It’s only a matter of time.” I know they’re more likely to pass away before everyone else I know, but everyone’s impending deaths are “only a matter of time…”

In order to stay semi-sane during all this, I’ve done the following things, which may or may not work for you during your time of intense stress. Only you and your doctor(s) know your limits.

  • I spent more quality time with my kids: True, I can’t go hiking or spend an entire day on my feet or on my arse like most people my age, but I CAN ensure the time I spend with my kids is memorable, and that I’m as present as possible. Doing more-and-more small things with them and having longer, deeper discussions (even with my non-verbal autistic 20-year-old) has brought us all closer than ever.
  • I Wrote! (insert hobby of your choice)  Working on my fiction novel has allowed me a bevy of chances for moments of useful escapism. Some people find the same level of therapeutic catharsis when they read, watch TV, knit, or post their thoughts on social media. There is no right or wrong way to “escape”–do what works for you. No one should fully bury their head in the sand, but we ALL need the occasional escape. And Spoonies dealing with extra stress, even more so.
  • I Screamed! Sounds batsh!t, I know, but screaming into a pillow is highly cathartic! I recommend it to anyone who can physically do so without harming themselves. If you can’t scream or you’ve tried it and it doesn’t help, write down ALL your gripes, all your grievances against your illness, your symptoms, the way you’re treated, any and everything eating at you. Then BURN IT! Watching the ugly words that represent the even uglier feelings you hold inside burn to ashes, has proved most helpful for me. (Please burn responsibly).
  • I Meditated: I’ll admit I can’t always get into a meditative state–not easy with muscle spasms, electric shocks shooting across my lower back and legs, nausea, or whatever else is plaguing me at the moment–but meditation DOES relax me a little, and a little relief beats none at all.
  • I Read: A Lot: If you roll your eyes at the idea of “self-help,” you’re not alone. I used to respond the same way– I still do, depending on the self-help source. But if you’re interested in self-help and don’t know where a spoonie like you should turn, I highly recommend Jenni Grover’s Chronic Babe 101and her YT Channel. Mel Robbins also has several free videos on YT, as well the book The 5 Second Rule and Stop Saying You’re Fine: The No-BS Guide to Getting What You Want. I’ve also read a number of fiction novels (fave recommendations here) and helped spread awareness for Indie author’s online.
  • Set Boundaries for my Time and Availability: Easier said than done, but we MUST set boundaries. If a family member doesn’t understand why you can’t drive across town at night, for example, explain it to them. I do my best to shake off their ignorance and carry on, kindly reminding them that my CHILDREN are my number one priority and I can’t risk my life driving when I know I shouldn’t.

Overall, staying busy with positive tasks keeps me going–especially during intensely trying times.

What keeps you sane?




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