I’m a woman who has several chronic illnesses that severely impact my life. Hence, I identify as a spoonie. For those of you who don’t know what it means, a spoonie refers to someone who suffers from a chronic illness.
This metaphor was invented by Christine Miserandino, an award-winning blogger and patient advocate, when she was trying to explain to her friend what it’s like to live with lupus. In order to clearly explain her point, she laid out a handful of spoons on a table and said that they represent daily energy reserves. Then, she went on to say that if a patient’s energy runs out, they can choose to borrow a future “spoon”. However, this has consequences – you can run out of future energy and be bedridden.
Every once in a while I think about the little things about my life that I had to change, or new habits I’ve developed throughout my journey. Here are a few random thoughts that anyone with a chronic illness — a.k.a. a spoonie — should be able to relate to.
1. You have left a butt imprint on your bed/couch because you spend so much time on it while resting and recharging.
2. The constant thought of “is it a flare-up, or is my appendix finally rupturing once and for all?”
3. There is a good chance you may glow under UV lights from all the radiation from all the scans you’ve had in your lifetime. (This *may* not be factual.)
4. You prefer to shop at a drugstore like Walgreens for random items because it requires much less walking than having to go across the aisles of your typical grocery store.
5. You realize that healthy, able-bodied people will never understand why you are more exhausted after your “relaxing” shower/bath than before.
6. You need a week to rest up in bed after having to leave the house to go to a doctor’s appointment/run errands/etc.
7. You roll your eyes internally and scoff at your coworker who said their sister/mother/other family member “cured” the same chronic illness you have by going vegan and breathing nothing but essential oil-diffused air. However, you do try to keep a straight face the whole time.
8. You wish your nurse didn’t really have to go through your medication list at EVERY. DAMN. APPOINTMENT.
9. Your leggings/pajamas/comfy clothes outnumber your actual “go outside and do stuff” clothes in your drawers and closets.
10. The excitement of yet *another* day of binge-watching a new Netflix show has really lost its spark.
11. You’re exhausted every minute of every day just from trying to exist.
12. You keep a food journal, a pain journal, and a new symptoms journal, among others.
13. You have multiple heating pads.
14. You are more familiar with the staff at your local hospital than you’d like to admit.
15. You’ve really had to change your relationship with food.
16. You have more internet friends through support groups than real friends because at least they understand your struggles.
17. You have to cancel plans, appointments, etc. at the last minute because a flare came out of nowhere.
18. You learn new hobbies such as crocheting or knitting just to pass the time.
19. You have to leave a job or have been let go from a position because of your illness.
20. You know that you will never ever have enough cozy slippers, fuzzy blankets, and other comfort items that bring a smile to your face.
21. You have to cut toxic people out of your life, even family members, because they refuse to accept that your illness is chronic and debilitating.
22. Scrolling through Pinterest is always a great way to pass the time.
And last, but not least:
23. You are so much more than your disease.
24. Moreover, you are, and always will be, enough.
These are just some of the everyday thoughts you probably have if you’re a spoonie. What weird habits have you developed to accommodate your differently-abled life? Feel free to share yours in the comment section below!