Sorrow

I came to terms with this disease years ago. I knew that hours, days, weeks would come that I would not be able to do certain things. But it still hurts. I spent the evening with some friends at a BBQ and some swimming, got to sleep in this morning, yet I feel like I have been hit my a freight train. I really need to get off this couch and just do anything, but I can't.

When something major happens is your life you go through stages. (Denial, Anger, Bargaining, Depression, & finally Acceptance.) I have been through these, I feel like I may have skipped some. Anger, depression and acceptance I remember. There was no denial, there was just too much "proof". I feel like I have been bargaining for years on a daily basis with this disease. There is so much stuff to do and so little time to do it, it seems. I feel bad when I can't do things with friends or family and I feel like I miss out on so much. Maybe I will get off this couch sometime today.

I'm EXHAUSTED!!!

When someone asks me how I feel, it really just depends on the time of day. It is hard to describe to someone what you go through on a regular daily basis. I found this story years ago and I like to share it with others when they try to understand just how I am. I do not recall were it came from, but the story involves someone with Lupus, but anyone with a chronic disease can totally identify with this store.

THE SPOONS

My friend asked what it felt like, not physically, to be sick. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. I explained that the difference in being sick andbeing healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to.

The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions.

I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else being incontrol.

I asked her to count her spoons: I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with.

She counted out 12 spoons. She laughed and said she wanted more. I said no. I’ve wanted more "spoons" for years and haven’t found a way yet to get more. I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple; each one would cost her a spoon.

When she jumped right into getting ready for work I cut her off and took away a spoon. " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too."

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving herlegs. Reaching high and low that early in the morning could actually cost more than one spoon. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.

I told her she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons".

You do not want to run low on "spoons", because you never know when you truly will need them. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long.

She was forced to make choices and think about things differently. She had to choose not to run errands, so that she could eat dinner that night.

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability orillness.