Category Archives: spoon

can’t believe what happened

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I can’t believe what just happened last week. You all know how I believe in the spoon Theory? I have had so many people read out loud the spoon Theory, most people will read it and then look at me and say Oh my, Mary I can’t believe this and do you really have to keep “Spoons” then I say yes I do. I have to make sure that I have the spoon’s to do everything in life. I have to count the baby steps of every thing I do.

Most people who have read the spoon theory are people who I have to talk to or be around  during the week. So they see me in a good way, and a person that hurts all over. The Spoon Theory has been able to explain in words how I feel. Why I have good days and bad days. I get it out and share it as much as I can when I get a new doctor, new boss, think I found a friend and even the boy friend. Some times I need to read it again when I feel like nothing is going my way. I have even given it to my own family to read. So I use it a tool to show others what my life is like.

Let’s just say that the last person didn’t even want to read it and talk about it.  This hurt me so much.

How much more information do I need to give you about my

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Today I am in a much better place then I was any day last week. I would love to just give my Disability to some one that keeps asking me about getting new information from all my doctors. For those who don’t know here is a very quick run down of what happened in the past.

Back in 2006 I had to find a way to keep my job. I got with a state-run group that came in to my job and talked to all my doctors. They did a full write-up about my Cerebral palsy and what I can and can not do in my job. It was a paid thing that the state payed for. It was not a easy thing for myself or the people that were helping me get all the information.

Well now in 2012

I feel like I have to prove that I still have this thing and that it is not going away. Cerebral Palsy is not going to just go away. (For myself it has gotten worries) It’s not a fun thing that I like to talk about but I’m learning that I need to. This is a hard time for me. Any time I have to do something with the C. P it is hard. Well I have to go to all the doctors to get new information, up to date info. Well some of the doctors that I see I only have to see one time a year. Or I might only have to see them every quarter. Then there are others of them that I have to see every week. I have to do things that I know I need to do to keep myself able to do my job. like going to the pool every week.  So I have to get info from all of them. So that means that I will have to go and see some of them now. It’s making my life a bit of a pain right now. If you can’t see I’m not getting any better. Yet to question  the disability is a whole different ball of wax.

I don’t know how my Mom and Dad did it when I was a little girl. I say that because I don’t remember going in and out of doctors and I didn’t feel like they took me out of school that much. I was just another little kid going to school. Yet, they have all this paper work about my C P. (paper work that my mom can’t find now.)

I know that people and companies have to ask so please don’t tell me that people have the right to know if you work with or for them. why can’t they just take my word on this one.

Yes I know it’s not unheard of and I get it. but when I meet with these people I didn’t get to have a very important person with me durning this meeting. So I’m now having to process this info on my own. So the processing Error that is there is kicking in big time.

I did have to tell the people there that I was not going to have all the doctors info until next week. I was going to be working on that on my days that I’m not in an appointment.

So I’m mad and upset that this is going on. I know that the depression is getting worries. I was able to talk about that at one of the appointments this past week I feel like that was a very good thing for me. I just felt like I just needed to get it out. It was at the end of the week and I was out of spoons big time.

Why do I have to show these people again and again that yes it’s C P and it’s not going to get any better.

My own spoon Theory

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Hi all, I have been wanting to put this post out for a long. long time. With the help of friends I was able to find a way to write this post. Most of you all know how much I can look at the Spoon theory and see me. I have had many people read it, and some people see it and say Mary you don’t have “Lupus” so what does this have to do with you? I say something like I might not have Lupus but I do live my life-like this. Every thing I do has to be thought out and looked at with little baby steps. So I have changed the Spoon Theory to be about me

The Spoon Theory

My friend and I were in the diner, talking. As usual, it was very late and we were eating some thing like dinner. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about apple things, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation She then asked me out of the blue what it felt like to have Cerebral Palsy and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Cerebral Palsy. She came to doctors with me, she saw me walk with a cane. She had seen me cry in pain, what else was there to know?

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. 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. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Cerebral Palsy”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being 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 a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, 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, in this case Cerebral Palsy, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and 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. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? 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 Cerebral Palsy.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, because you just got to sleep 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 spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. 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. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on. I also have to see how my day is going to go. What kind of appointment am I going to have to go to. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that 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”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well not getting up and  standing every few hours, or even typing at her computer too long because your eyes can’t take it for to long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, but still had to make the appointment. And still be able to eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, do chores, or get ready for the next day but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Mary, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

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 wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. 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. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. 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”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. 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 Cerebral Palsy, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

So here is my own Spoon Theory. I tried to change it as much ask I could to make it like my life. However, to find words was somewhat hard. It was at that time that I went back to the original  Spoon Theory 

there is something that I would love to post

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Have you ever just wanted to post say something but you have not been able to get the author to Ok it. You see I have changed the spoon theory to use my own disability.  However the person that as the copy writes on it has not written me back to tell me if I can use it. Well post it here. I would love to just be able to put it here. I would give all the good words to the person that wrote it. I would only say that I have my disability. The organelle one is over here. . . You now give her the rights all hers.

So what would you guys do?

Thinking about a thing that I still live by

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Yes it’s winter and there is so much that I wish i could do. Yet, I hurt so much right now, the cold is coming on and my body does not want to go through every day things. So this got me to be thinking about something that I really have not had time to do but today I was able to do just that. I needed to read “The spoon theory” one more time. This was for me to know that I’m not the only one out there who hurts all the time. And so I when over to the web site. There was new things and there was some old things that I love. but I really got into a viteo and I would like to just take a momemt to show you this. Just for me and only for me. When you see or read Lupus think and say it out Cerebral Palsy, why because I might not have Lupus but I do have Cerebral Palsy and I have to live with ever day.

The weekend

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Another weekend has come to an end but I had so much fun. I got to get out-of-town and go to the boyfriends mom’s cabin. I did get some good pitchers. I think I used all of spoons for the weekend. You see we went swimming and I was using this thing that you have to use your own weight and balance to sit in it. I love it because you get a work out in the thing. I think that all the pitchers of me are in that thing it was great. I didn’t think that I was using much energy because I was in the water but oh my was I ever. Like I said I think I used all my spoons for the weekend. It was so much in a good way, you know. It was fun and I got to work out at the same time. So that was the weekend. When I get time I will put a pitcher up.