Sunday, May 20, 2012

Spoon Inventory

For those of you not familiar with the Spoon Theory of chronic illness, please follow the link so that this post does not confuse the hell out of you.

I am having a below-average spoons in the cup weekend. I have cried a little and resolved myself to not being allowed to do what I want to do. My body refuses to cooperate. For those of you who get less spoons per day than I do, I hear you. I recognize that I have it good. I just feel the need to lament a little. This in no way negates the reality that I have it pretty good most of the time.

A good day for me gives me about ten spoons, which usually translates into four hours of non-reclined activity. I can prepare a meal or two, take a walk, do laundry or garden, drive into town and shop...whatever. After about four hours, I start to get weak and pale, and my brain stops working as well. I start to lose words when I talk and I have trouble thinking. I might have a conversation and never remember it. It isn't fuzzy, it just never existed. I have had this happen while I am grocery-shopping, which has led to some stupid purchases and the occasional embarrassment and tears. I have gotten lost while driving because I could no longer visualize the way home. Every good day is a race against time, and I like a good challenge, so I don't mind (much).

An average day for me, I am allotted six spoons. I can still get four solid hours, but they are hollow to me. There are gaps where my will and drive are pushing me to do more, but my body knows it needs to stop. These days are hard because I have to say no to things, and no one seems to get it. I "look" fine, so it looks like laziness. The part of average days that I find the most frustrating is that I am one of the LEAST lazy people I know. If I look lazy, and you have met me before, shouldn't you realize I am not choosing to sit still? I would never choose that. I actually made a New Year's Resolution many years ago to learn to sit still...to learn to be content doing nothing. It was a joke. Everyone who knew me laughed when they heard it. I couldn't even get to five minutes. Be careful what you wish for!

A bad day is two to four spoons. These are the days where I go somewhere alone and cry. These are the days when it is sunny and the birds are chirping, and I want to run outside and live, but I get short of breath and weak before I reach the door. These are the days when the reality hits that I don't have a job, that I can't have a real garden, that I won't be able to get my body toned, and that I will have to keep asking others for help with simple tasks. These are the days when the kids look at me with flattened expressions because I say no and they resent it. I don't blame them. I resent it, too. These are the days when "Just Do It" translates poorly because my breath won't seem to fill my lungs where I need it, and my legs ache when I stand up because there isn't enough blood flow, and I consider taking extra pills even though as a professional I KNOW that isn't how they work, and then I think about crawling under the bed and sleeping to hide from the reality of it all.

Then, I have a few good days and I forget. I forget how sick I can be, and when it rolls around again, I find myself stunned by my inability to function. Every. Damn. Time. I was having some good days and I wore heels. I am pretty sure that was the choice that stole my reserve spoons. Heels. I forget how bad my balance is now. My muscles worked overtime to help me walk without staggering. I am now paying the price. I looked nice, but it wasn't worth it. From now on, heels are reserved for sit-down functions only.

Maybe I need a Low Spoons Day Basket. It is reserved only for when I can't do much. It is a treat and a signal. It shows that I am not lying here by choice. It takes away the need to apologize and fret over things left undone or passed on to others to do. It holds knitting that is only touched on bad days and doesn't require counting. It contains some chocolate to ease away the stress of all those damn birds outside calling to me. There is a set of stationary so that I can write a few notes to loved ones far away. It could have something to flavor the copious amounts of water I try to drink to replenish what I lose when my body tries to conserve blood pressure by putting it all in my kidneys. I think it should have hair accessories and make-up, and maybe...just maybe...some nail polish. I never have painted nails. It would give the girl and I a shared activity to lift that feeling of disappointment we both feel on these days. What else should it hold? Any suggestions are welcome...as long as they don't require me to be upright in usage or particularly bright.

I think I will ask hubby to move my papasan chair outside to the deck. I will lie in the sunshine and think about Clara on Heidi's mountain. Do you remember when she walks for the first time? Did you cry with joy? For those with more spoons than I have today, please go find something that makes you cry with joy.

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