IF you are lucky (is there an emo for sarcasm?) enough to have a chronic illness then you will understand my Hershey bar theory of energy (clinically known as the Spoon Theory but spoons make me think of ice cream which makes me think of chocolate cake which I have a mix for and am trying so hard not to make until I have company….but I digress).
My Hershey Bar Theory (hereby known as HBT because it will drive me crazy to have to type the whole name out….) is very simple to understand.
Imagine a world where when people wake up, they are given an eight-piece bar of chocolate to use for the day for energy. Without this chocolate bar, they would be bedridden and have zero energy. You are free to use as much as you want of it but it does not carry over to the next day.
So to get out of bed and get moving for the morning you take a quarter of one piece and you are good to go until you get to work where you take another half of that first piece and by noon you need the last piece of the first piece. You still have seven full pieces left to get you through you day. About 1:00 you decide you really need some energy to help get you through the rest of your work day so you eat a full piece of your chocolate bar. Still have six pieces left and it is now 5pm and you want to stop at the gym on the way home and so you eat another full piece….still feel great at 6:30pm and decide to go out to dinner with friends (or for most of us, make dinner for the family) so you eat another half piece of your daily energy bar. Now it is 8pm and you still have 3 hours left in your day so you nibble the other half of your 4th piece of energy.
Bedtime comes and look at that, you have only used up 4 of your 8 pieces of energy and you are tired enough to go to bed and get a good night’s sleep and wake up refreshed and ready for the day with your new 8 piece energy bar. Of course, some days you might eat most of your bar or eat less than your “normal” 4 piece day but unless you have a super active busy day you never run out of chocolate pieces.
Now, let me explain how someone with a chronic illness uses their bars.
We wake up and first thing we need to do is eat a full piece of our bar just to get out of bed because unlike most people we have not had a restful night’s sleep so we are energy depleted upon waking. Now comes the huge decision of taking a shower/bath which will use up one to two full pieces of our energy bars. So we decide to just wash up which just uses half to three quarters of a piece. If you have any kind of hair style that is more than just a quick comb thru, then you use up that last part of your second bar or more if you have to curl/straighten it and we are talking a full bar if you need to wash it first.
So, we have gotten out of bed (1 bar), cleaned up (1-2 bars) and now we need to get dressed. If it is just a stay at home, not gonna see anyone kind of day, then it will be only a half-bar requirement but if we have to go somewhere and look presentable then we are a full 1 and a half or two bars…more if ironing is involved.
So it is now 8am and we have already spent anywhere between 2-5 bars of our daily allotment of 8.
Now this is just for a person who has no one else to care for but herself, you add a husband and children to this and it is possible that by the time the kids are off to school and hubs is gone, she is down to 2 pieces or less and it is only 9am.
If that person has to go to work as most of us do (I am blessed to not have to work outside my home at this moment of my life but when I did, it was so, so hard), then they use up another quarter or half just getting to their job, more if public transportation or driving a long distance is involved or bad weather. So by the time they get to their job, they have only 1 or 1 and a half pieces of energy left for the next 12 hours.
Most chronically ill people are completely WIPED OUT by 3pm. I am talking complete exhaustion not unlike the tiredness that you feel when you have the influenza. Talking is difficult. Thinking is difficult. Moving is almost beyond our ability at this point. And yet many, many folks have to go home to do more “work” and to try to be loving and caring and interactive with family members who just cannot understand how someone can be so tired so early in the evening.
Unless you live it you truly cannot understand the pain that living this way entails. Not only the physical pain but the emotional pain of being thought of as lazy, unmotivated, depressed, anti-social, angry, not a good spouse, mother, child, friend, sibling, Christian, employee. How humiliated we get when we have to cancel yet again another date/get-together/etc and worry that people will stop inviting us to things because we “never show up” anyway. I have heard it all and have berated myself more and harder than anyone else possibly could. I KNOW I disappoint friends and family by not showing up. More than likely, I am home hating myself for being so “weak willed” that I can’t muster up the energy needed to get there. I HATE not being able to be reliable. I HATE not being able to celebrate weddings and showers and to be able to go to candle parties and neighborhood pot lucks and girl’s night out. And I think the worst is not being able to go to funerals of friend’s parents or spouses (or God forbid, their children). I agonize over what “they must be thinking” that I didn’t care enough to come. I CARE but I have used up every last crumb of my energy bar even if it might be only 10am.
So if you have lasted this long in this post, please, please, please remember the HBT the next time I or someone else who is ill, cancels on you or disappoints you by not showing up or by not following through with some plans. We dream of someday being “the life of the party” (ok, most of us would like to just be able to show up and sit in a corner and just watch). We dream of being like we “used” to be.
The bald-face reality for most of us is, tho, that THIS OUR LIFE. This is our normal…there will be no going back to the days where we took our energy for granted, to a life that didn’t revolve around how many chocolate energy pieces will used to just bare-bones function. This is who we are today, in the bodies we have now but the person inside has not changed. We still laugh, love, care, cry, enjoy the things we can do.
But for us, all those things use more of our energy pieces than for you. An unexpected energy burst can be so wonderful but comes at a huge cost. It’s like when you are a kid and you get to eat all your holiday candy in one day…it’s great for that day but you suffer for it for days afterward. It’s like someone offered us a full three days worth of energy bars and we gobble them down hoping that somehow those bars will reappear as the week goes on but of course, they never do and so we crash…..hard….just breathing is eating away at our meager allotment of pieces. Sometimes it takes a week or better to get back to “normal” all because we squeezed every drop of energy out of those unexpected bars and our bodies are not used to that much movement and so by overusing those muscles on our “energy” day/s, we have set ourselves up for a world of hurt. And more than likely we never got to finish whatever we started cause there is so much that we have not been able to do that we are starting here and running there and doing this and doing that. Then the crash hits and all those half-done projects are left sitting there….staring us in the face…mocking us…physical evidence of our LACK. It will take us days/weeks just to put away everything that got left out during the exhilarating moments of energy.
And I do mean exhilarating….it’s akin to drinking fresh pure water when you are so thirsty that your uvula is sticking to the side of your throat (I have been that thirsty….). You are giddy with the promise of actually being able to do something without a heaviness weighing you down. Where to start? Do I do mundane household chores that are desperately needing to be done or do I create with abandon. For me, rearranging rooms gets both things done. I move furniture, I vacuum, I mop, I dust, I paint, I sew, I scream with joy at the things I am working on, the energy that is in me….I am invincible….well at least until 9pm when I finally stop and realize that I can barely stand up straight as my back is killing me and I am walking on someone else’s feet as they are too big for my slippers and they are throbbing but my mind is still racing….more colors, more lights, more, more, more…..get more done. Take mega dose of painkillers and try to sleep. Not gonna happen….mind is still moving….do this, do that, get up, get up….but my body is saying, “Move out of this bed fat girl and you will die”, so I lay there thinking about businesses that I could start….crafts that I could make, ideas fly like mad inside my brain…..you can do it, you are awesome, you are a creative machine….on and on it goes until finally as the clock strikes 6am, I fall into a restless sleep for three hours and then I am up again…..not quite as energetic as the day before and I need more painkillers to start the day but I still feel encouraged…..more painting….more ideas….more furniture moving…..don’t sit down as that might break the “spell”…..move, move, move….start another project….maybe I should finish the ones I am only half-way done doing…..no, there will be plenty of time later…..more projects…..this time it is only 4pm when I crash….body killing me…..the house a total chaotic wreck….nothing finished….paints all over, vacuum in middle of floor, mop out, junk piled up everywhere….but tomorrow is another day….I will get everything finished and in it’s right place tomorrow…..have to take sleeping pill to sleep plus more painkillers. Grandiose dreams are gone. I am not quite so awesome. Business ideas will have to wait…
Wake up the next day with a lot less energy. Maybe I need to sleep more. But I know that if I go back to sleep I will have tons of “adventure/horror” dreams and so I will not feel more rested by staying in bed. Hobble to kitchen for coffee and then to Lazy Arse Chair where I spend two hours looking at FB and my mail. Better have some breakfast before starting the PROJECTS….might as well go straight to lunch as it is almost noon so I have some carbs which bring on a bucket of tiredness so I lay down for “just an hour” and after a restless pre-nap realm, I fall asleep for three hours and wake about 4pm. Nothing has gotten done.
Thus begins the pattern for the next few weeks….and that is my life…that is my normal…..that is my millstone….pity me not….it could be a lot worse and I am so grateful for the health I have and the wonderful friends who have stuck by me and still like me and for my long-suffering family who by osmosis have endured this battle with me even though they still sometimes don’t quite get it but love me anyway.
Thank you for reading this….not only so you can understand me a tad bit better but for all of my “peeps” who share in this life of The Hershey Bar Theory….may our energy bars last all day!
The Queen of Many Words