Disclaimer: I know some people don’t like the term spoonie, because they find it belittling or that the spoon theory doesn’t fit their experiences. I also find it is not the best metaphor for my fatigue, because to me it sounds like you can plan and manage your energy resources whereas sometimes you can’t. But anyways, I like it as a term every chronic illness warrior recognises and can use. Also these are from my own experiences, but as any spoonie knows, everyone has a different experience.
Your pharmacist knows you, and treats you like a special customer
I’ve been given a nicer bag to carry my meds home in, and even trusted when the card machine wasn’t working to come and pay another day.
You start to learn about your specialists life
My specialists in Spain in particular, I learnt about my rheumatologist’s bad back, and his personal life. Frankly, it helps being on chatty terms with your doctors.
You eye up fancy pill boxes on Amazon
I have a bog standard one for am and pm, but you can get some with nice patterns and that look less like pill poxes. I’m thinking of buying one with a zip, as sometimes my current box can open and meds go everywhere when travelling.
You follow fellow spoonie blogs
It’s great to know there is a huge community out there, especially if you can’t make it out of the house. They are funny, relatable, touching, and eye opening to other people’s struggles.
You need to rest after breakfast
I hate waking up and knowing it’s going to be a tough day for fatigue. And that I struggle to be functioning before the afternoon, because I’ve ended up resting after breakfast or a shower and can’t move.
You’re at hand with medical advice when a friend is ill
And often painkillers or other at hand, you walking pharmacist you. In Spain I was the one friends would ask about registering at the doctors, or getting vaccinations.
You have doctors numbers saved onto your phone
And when, like me, you spend time in different places (or countries), the list is divided by location as well as type of doctor.
You’ve given up on webMD
No point worrying yourself when you’ll be seeing the doctor soon enough and can ask them. Plus with so many tests, anything concerning will pop up in the results.
You have gone over to someone’s house just to nap
Not on purpose (usually), but sometimes you get there and realise you cant keep your eyes open. They usually offer you a bed to lie on.
People always seem surprised at the amount of meds you take
And the “you must be rattling!” joke often follows.
You have days you are sick of being sick
Sometimes I can be at the pharmacy, the waiting room, or just as simple as taking my meds in the morning, and I get a sudden urge of being done with lupus. Find a cure already, I’m tired of having it being the biggest, most controlling thing in my life. Then I get on with my day, because there’s no point moping about things out of our control.
But you’ve also forgotten what “normal” is
This time next year I could be on next to zero meds. Which as exciting as that sounds, it’s also scary to think that could be a reality again. No funny side effects? Potential discharge from specialists? Is that normal life? Not to mention your daily aches and pains are so natural to you, you almost welcome them like an old friend. My dodgy joints are mine, I know how to take care of them.
And so many more…
Inside a Mind 