I read an article the other day about a woman who took the spoon challenge...so I thought let me write about this. If you want to understand a day in the life of someone battling Rhuematoid Disease, fibromyalgia, lupus or any other disease that is attempting to destroy your otherwise once upon a time healthy body, go to your kitchen while reading this and put twelve spoons in your hand. .....I'll wait....do you have them yet? Oh you don't have 12 spoons? Well usually I don't either, but that's okay. Now sit down and get comfy as I take you through my day (just to clarify, not everyday is the same...as a matter of fact, no hour is the same. Also, not everyone has the same days or hours as I do) now on with our day.
5 am - the dreaded alarm goes off. And so it begins...before you dare try to get out of bed, you have to remove all apparatus on your person...braces, heating pad, face mask if you have one. Then you begin gentle stretches...trying to loosen up those joints and muscles that have finally calmed down and let you sleep for 3 or 4 hours. If your lucky. Slowly you get up and out of bed. 1 spoon please.
5:30 am - Now you decide what your wearing today...loose and light cause I might have a sweat day, or heavy and warm cause I'm already freezing without my electric blanket, comforter, and quilt. Make the bed? Hahahahahahaha not wasting my precious spoons on that. Any buttons or zippers can be a challenge, so forget those. Bras and socks are hard enough. 1 spoon please
5:45 - finally make it down 14 stairs. Make it to the couch. My husband ( thank you Lord for bringing us together) brings my coffee and helps me get my socks and slippers on. You guessed it...give up spoon number 3. and we haven't even got started today.
6:00 am - locate the snacks you know you bought for hubbys lunch, just can't remember where you put them. Oh and since the bathroom is right off the hall, better take advantage. Now, it's time for hubby to leave. You see the concern in his eyes, because he has to go to work. He worries that you'll try to do too much, that you will wear yourself out and get sick. You worry about him worrying and wonder how long he can deal with your lack of being able to do all the things you used to do. You go back to the couch, you think too much, you find your depression overwhelming when these thoughts over come you. Spoon number 4.
You wake from sleep that neither was restful or restoring to realize you have to get your meds in you. The ones with all those warnings about all the other things you can get from taking the Medicine to stop the disease that has changed your life. And you think the other shoe dropping....the med stops working. Then you start over with the guessing game, the approval game the insurance company plays, new side effects...oh sure, you don't think about it 24/7, but it's always there in the back of your mind. I'll be needing spoon 5. Thank you.
You forgot to eat...so you go back to the kitchen praying there is something simple to eat. usually yogurt and fruit. on good days, you can make eggs, toast, or cereal. After you eat, you realize you forgot to feed the dogs. Your daily companions who cuddle and snuggle with you, because they understand. Let's hear it for spoon number 6...halfway through and the day hasn't started yet.
9 am - in the car to take your last child to school or work. She drives there, cause she knows your wrist and hands hurt. Thank goodness for pharmacy drive through, because you forgot to fill everyone's medicine and called it in at 8, begging them to have it filled by 9:30. There is a problem with filling your meds...they are waiting on a call back from the Dr or the insurance company...come back later. So you go home. It's now 10 am. Spoon number 7 is up...and it's not so lucky.
You get home and have to remove coat, hat, gloves, boots...oh yes it snowed again and the temps are in the 20s. slippers on, head to the couch..nap time. Spoon number 8.
You wake in time for lunch...please let there be leftovers..nope. Now you have to figure out what to eat and prepare it. But before that, you have to do the dishes piled in the sink. Spoons 9 and 10 come on down!!!!!
Eat lunch, fold a load of clothes, try to read a book, but the fog and pain won't allow you to focus. forget crafts, your hands have a mind of their own now. Your body dictates who, what, where, and when. Hubby calls to check on you. You reassure him you are fine (Your not, and he knows it too, but you pretend) He offers to pick up dinner for tonight, to help. You are okay with that. Home cooked meals are sometimes overrated...besides, they really don't want to eat what you do....no fat, no gluten, no red meat, no dairy, no fish, no fried.
Oh spoon 11...don't be shy. Your on deck.
So, you have one spoon left...and you have to pick up your child, laundry needs done, there are more dishes, the sweeper needs run, bathrooms need cleaned, dinner needs cooked, and you need a shower. So, you give up. You enlist help when you can, and the rest forget it.
Eventually you only worry about getting up, dressed, and eating. The cleaning help starts Monday. The struggle to deal with the depression all this brings day after day is almost too much to bear. You pray, you cry....sometimes you just give up. But tomorrow is another day...another 12 spoons. Your priorities change. Paper plates and plastic forks are the new China. Takeout menus are the new reading material for your family.
Now you have a glimpse of what life is like for an RD warrior. I am lucky that my husband and my children pitch in to help. But the children have jobs and families of their own, they can only do so much. My husband is very tolerant of the clutter and mess. I am not so much...lol I miss the old me, but I am learning to accept the new me somedays. The cleaning help really does start Monday. A dear friend who understands my mess and how behind I am in housekeeping and does not judge me, but hugs me and assures me it will be fine. To my mind another defeat...But to my body, a time to refresh and save a spoon or 2 for other things like my grandkids, or dinner out, or a shower without needing a nap.
To all my RD brothers and sisters...I pray for you all everyday. I love you and understand your struggles. Keep fighting, keep hoping, keep resting. ❤❤❤❤❤❤
