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Spoon Theory – Living with CIDP
This week has been tough. Really tough. I had a 7-hour infusion on Wednesday. My mom had the boys ALL. DAY. It was the longest I have been away from them since pre-COVID. It was the longest I was away from my home, my bed, John. It was so lonely. I thought I would appreciate the quiet and alone time. To read my pile of unread magazines. To catch up on my texts, blog, emails, blogging educating courses and social media. To catch up on my own thoughts without hearing, “Mom, can I have juice? Can I have cereal? Can you play cars with me? Watch me dance! Can you help me get dressed?”
But after about 1 hour, I was going crazy. I needed to know how the boys were doing, if they were behaving, if they were eating. I needed their hugs, their snuggles, their smiles. But I was trapped with an IV in my arm, blood pressure checks & temperature checks every 30 minutes, in a little cubicle sitting in a reclining chair, and the only comfort was my blanket I brought from home and knowing that I would be in my own bed at the end of the day. After my 3 day dose 4 weeks ago, I spent 2 days after throwing up and with a migraine so bad, even opening the curtains in our bedroom to let in daylight hurt so bad. I wasted a perfect summer weekend in bed while John took the boys and went swimming, playing outside, enjoying good times with the neighbors. And I was dreading these next few days for how I would feel, if I would be in bed the same way after this infusion on Wednesday. Yesterday, (Thursday), I was in bed all day. I took 2 long naps. I was trying to stay ahead of the nausea and migraine with meds. And the boys crawled into bed with me to cuddle with me, tell me stories, show me their ninja moves, Fortnite dances, and just being themselves.
John, still working from home, checked on me and helped as best he could, even treating us to Sonic on his lunch break. It was last night when Max put on the Tennessee Titans flag around him like a cape and ran through the house like a race car that I just broke down and cried. I realized that he doesn’t know what I’m battling on a daily basis. He doesn’t know how badly I wish I could be MORE for him and Joey. He doesn’t know how much I want to be their everything. He just goes about his day, being Max, not even knowing how much he has inspired me and motivated me to fight everyday to do the best and the most I can.
Which made me think of this Spoon Theory. It has been awhile since I watched this video (also at bottom of this post) and listened to someone who really gets what I go through. My boys can give me hugs all day, but they don’t really know what I’m going through. And I pray to God they never will. John can give me all the back rubs, all the hugs and shoulders to cry on, but to hear the words coming from someone else who struggles like I do was what I needed.
This girl gets it. Although she has Lupus and not what I have, (Chronic Inflammatory Demyelinating Polyneuropathy – CIDP), its still a chronic illness that is debilitating & hard to explain to healthy people. In a nutshell, the Spoon Theory says that although healthy people have an unlimited amount of energy (spoons), disabled people have a certain amount of spoons to get through their day.
They have to know how to spend their spoons for the whole day before even starting their day.
Which is why I am not spontaneous or do things without weighing pros & cons.
Let’s say you are given 10 spoons per day:
Getting out of bed, making the bed, showering, getting dressed = 1 spoon. (2 if I have to wash my hair, then blow-dry & straighten my hair, and shave my legs)
Making breakfast, taking medicine, getting boys fed, pets fed = 1 spoon.
Laundry = 1 spoon.
Grocery pickup order, drive to go get it, unload and put everything away = 1-2 spoons (depends on size of order and if John is home and/or has time to bring everything in from car)
*At this point, I am halfway done with my spoon reserve. And ready for a nap.
Switch out & fold laundry= 1 spoon
pay bills for the month, sit at table and type on computer = 1 spoon
When John gets off work is when boys want to play outside = 1-2 spoons (sit in the driveway or cul de sac with neighbors, have to be awake enough to socialize, on a good day I will join everyone.)
Making dinner = 1-2 spoons depends on if we have leftovers, make a pizza, frozen meal VS. homemade meal, cutting meat and vegetables, stirring & draining pasta, putting pans in oven.
I could be out of spoons before dinner is even over. We haven’t even done bathtime and bedtime yet. I have to bargain with myself if I know I want to cook a homemade dinner (and I love cooking, especially with fresh groceries from my pickup earlier that day!), then I know I won’t finish laundry or pay bills at computer that day. And chances are, John is the one that does bathtime/bedtime for boys as I am already in bed checked out for the day.
I am not telling you all this for pity. Please do not feel sorry for me. This is just my normal. And I have had family & friends ask me how I’m feeling. So I wanted to share this typical day and how I constantly bargain with myself against my spoons. This is my family’s normal. John knows me so well, he just steps in and takes over if he can see me struggling. And sometimes I do have a GREAT day, and we stay outside later, chatting with neighbors, and I feel awesome. It depends on how I feel from previous day. If I overdid it, I borrow against tomorrow’s energy (spoons). My hope is that doing these IVIG infusions will help in the long run, and I can get off the prednisone as I have been on this for 10+ years now.
So while I am in this new treatment transitional phase, I am not sure what to expect day in and day out. I’m not sure how my body will respond yet, and won’t know for a couple more treatments. I hope that it will give me more good days than bad days. I hope John and our boys know that I love them so much and they make my heart so full, no matter if I am napping in bed or if we are outside playing/swimming at neighbors’ pool. I just try my best to be present with them each day. I do the best I can, and that’s all anyone can do. 
This is the video I’m referencing when talking about The Spoon Theory.
BUT YOU DON’T LOOK SICK by Christine Miserandino
For more information on CIDP, please go HERE to learn more and feel free to donate as more research needs to be done.
Cheers,
Jackie
