I've Dropped My Spoons

I am a Spoonie, the nickname often associated with people who have Lupus and well I have dropped my spoons. Lupus is a messy, unseen autoimmune disorder that wreaks havoc on your body. Since I was a little girl I had dealt with odd, unknown random illnesses that no Doctor could ever diagnose. I am certain my parents thought I was faking it at one point. Random fevers, sore body, intestinal issues yet no one quite could figure it out. At 7, I was diagnosed with Henoch Scholien Purpura, yup that is a mouthful. I developed random bruising out of nowhere and spent time in the hospital being tested. It was not until I was 20, after a car accident when my body just would not work. Another hospital stay, and every Doctor said it must be soft tissue. Then the “flare-up” hit me hard, I was in and out of consciousness and my parents rushed me to the ER. I woke up in a hospital bed and spent two weeks recovering and restoring my body back to its normal state, whatever that was anymore.

Auto Immune Disorders are not fun and even worse to try and explain to someone. I look fine, for the most part. That is where my spoons come in, you see someone once described having lupus is like carrying spoons for everyday activities and when you run out of spoons you are done for the day. It is like using all your spoons on one meal than waiting for the dishwasher to clean them so you can eat again. Only, sometimes I drop them, everywhere and it takes me some time to pick them all back up. I am in the dropped spoon phase. I certainly used them all with my busy week and go-go-go momentum but just when I thought I had them clan and ready for use again I dropped them all over the place. So here I sit amongst scattered spoons mustering up energy to pick them up and debating if I even want too.

Lupus is no fun when it rears its ugly head and right now, I am in the midst of a war my body has declared on itself. One minute I feel well enough to get stuff done and the next I am napping from exhaustion. Lupus affects every part of your body from your skin right down to your organs. Sometimes my joints hurt so bad I can barely hold things without dropping them, maybe that is why I dropped my spoons. Many times, when someone has Lupus, they have accompanying illnesses such as Systemic Sclerosis which is the tightening of connective tissue, mine has targeted my intestines and bowels causing awful heartburn and internal pain in my abdomen that does not give up. Therefore, keeping your spoons clean and in hand are important to function throughout the day. Sometimes when you do run out of spoons, or drop them, you just sit still and try not to worry about picking them up right away.

Explaining or expecting people to understand this illness is not always easy. Many say take nap or just ret you will feel better. If only it was that easy, I would have been doing that for the last 20+ years. Honestly, I tell people I have Lupus and I do not explain further, and they do not need to be concerned with my scattered spoons if they do not care to understand this illness that is not curable and will not just go away with a nap. I try to raise awareness of the disease, but it is a complicated one to expect anyone to know in depth. However, it would be nice if people understood it is not going away and it will not get better. If you wish to educate yourself google Lupus and see how it affects millions in various ways. Maybe a sliver of knowledge can help you better understand when a friend says they just cannot participate in the day due to Lupus.