What a Day of Decisions Looks Like for Someone With Crohn’s Disease
Today began like every other day.
Savoring my one and only cup of coffee for the day, I look over my to-do list. I love the saying, “First things first,” and for those of us with Crohn’s disease, that often means: Do I shower today or throw on a baseball cap? Do I walk or drive? Do I food shop or make do, wear makeup or not… exactly how many spoons do I have today?
For those of you who are not familiar with the “Spoon Theory,” let me briefly explain. Christine Miserandino, a woman with a chronic illness, was attempting to explain to her friend about the consistent fatigue that goes hand in hand with many chronic illnesses (it certainly does with Crohn’s). She handed her friend 12 spoons and said this represents all your available energy for the day. Oh and by the way, getting out of bed uses one spoon, so now you have 11 left.
If you’re healthy, think about your day — do you ever have to think ahead about what you can or cannot do? For example, do you ever have to decide on little things like: Do I shower? Should I just throw on a cotton summer dress so there is no pressure on my belly? Are my hands too sore to manipulate buttons? Can I get to the pharmacy to pick up my medications? If I have to take a pain pill, I don’t drive. Can I get a friend to take me to the pharmacy? What if I get there and start feeling bad?
I wonder how long can I sit at my computer today before the pain becomes too much and I need to lie down? Since I live on disability, making jewelry brings in my money for prescriptions. If I can’t sit, I can’t make jewelry. Plus, making jewelry creates a whole other set of circumstances, such as, do I just do repairs or do I feel good enough to get out my metal-smithing gear? Should I make lunch or just drink something?
So many things to consider that a healthy person may not give a second thought to. It’s your routine. The only routine for me is routine blood work.
Well as for today, I showered and threw on my summer dress since my belly could not handle the pressure of pants. I nixed the food shopping and medication pick-up; too tired. I managed to work in my jewelry studio for about an hour. The pain began to take over, as did the nausea, so do I push through and pay for it later, or do I take care of my body and heed its red flags? Not wanting to pay for it tomorrow, I chose to lie down, get a cool glass of red zinger iced tea and chill.
Three spoons left. And it’s a good day.
Image via Thinkstock Images
I was diagnosed with Crohn’s disease when I was 13 yrs. I was a tomboy who rocked party dresses. I was curious, loved my big Siamese cat called Shabooey and Surf, my soft shelled turtle. Curly Auburn headed, petite and topped off with enormous dark chocolatey brown eyes. The day the pain began, that little full of life girl, went dark...no one believed me. First bowel resection was in 1973...I had no idea how sick I was because back then or at least in my family, you did not speak of anything that wasn’t all shiny and bubbly. Thru the many, many years of confusion, denial and ignorance...I survived by skating on the surface of my life. Married, two beautiful children, a divorce and a successful career I loved, hit the fan and all 4 tires blew at once. In 2002 I became officially disabled. I had to stop working so I left the big city of SF and moved back to my hometown. I bought a pretty Victorian home and went from Corp executive to jeweler. After my 8th bowel resection, and blasting thru every drug on the market, tacking on more delightful diseases; sarcoidosis, primary immunodeficiency, Sjögren’s, and the list goes on I decided enough is enough, for Pete’s sake. I opened Heartandhammers.etsy.com and became a tiny business owner. And then I rescued a ginormous, sweet 110 lb dog, Greater Swiss Mountain dog who I named Ollie, a darling little sprite of a kitten, aptly named Skeeter and my older, mature Ruby. She is a calico with all the grace of a queen bee. We are happy some days, others too much pain. Bearing the weight of too many diseases takes the wit right outta me. I’m single so I do my best to balance everything but plain and simple...it’s really damn hard. I’m writing this from the hospital..I’m a little drugged up, sleep deprived and feeling lonely but...I’m a warrior now. So I’ll do what needs to be done and get home to my little family of 4 legged loves....rinse and repeat.
pamelasquires