When people are ill they find it hard to do everything that they used to do and it is frustrating for us who have to go through that, but also it can be frustrating for those around us who do not understand or cannot see that we are sick as many illnesses are 'invisible' and symptoms suffered like fatigue, pain etc. cannot be seen by an outsider.
It’s sometimes hard to explain how it feels to be ill and what fatigue really does to a person. One woman who found this hard devised a theory called the spoon theory and helps explain what it feels like to the person who is ill and unable to do all they want to do because of fatigue and pain etc.
The woman in question had Lupus and over dinner one night her friend/roommate asked her how it felt to be ill and have Lupus. She was shocked as she thought her friend already understood as she had been there through the pain etc. After talking about pill, aches and pains the friend kept pursuing and was not satisfied with the answers being given. She was curious and wanted to know more, what it felt like to be sick.
The person with Lupus glanced around the table looking for help or guidance on how to best explain this to her friend to best explain every detail or every day being effected and give the emotions a sick person goes through with clarity.
At that moment the spoon theory was born. She talked about it in terms of Lupus, so am going to change Lupus to MS, but the theory suits any chronic illness.
She grabbed the every spoon on the table, all the spoons from other tables as well. Looked her friend in the eye and said "Here you go, you have Lupus/MS. Her friend looked at her confused at the spoons being thrown into her hands, but finally took the spoons.
She explained that the different 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, something I took for granted before MS.
Before MS, I started the day with unlimited amount of possibilities and energy to do whatever I desire (well will rephrase that and say before 2006... as that's when my health started to go down) For the most part I did not need to worry about the effects of my actions on my health.
For her explanation she used spoons to convey this point. She wanted something for the friend to actually hold, for her to take them away from her, since most people who get sick feel a 'loss' of life they once knew. If she was in control of taking the spoons away then the friend would know what it felt like to have someone or something else, in my case MS, in her case Lupus, being in control.
Her friend was asked to count the spoons, she asked why and it was explained that when you are healthy you expect to have an never-ending supply of spoons (energy) But when you have to plan your day, you need to know 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. But she was not allowed more as this was not a game. It is important to know how many spoons you had and not drop any...
She was asked to list off the tasks for her day, including the simple such as brushing her teeth and it was explained to her that each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, she was cut off and a spoon taken away.
And it is important to remember your medication as if you don't a spoon will be lost as, in my case, the pain would be worse without the pain medication which makes me tired.
Showering costs a spoon, as does washing my hair, bending for the breakfast cereal and bowl etc. would cost a spoon as well. Every little thing costs energy.
When I write this I know that it isn't just people who are ill that have to face this every day, but it’s mostly everyone, those who don't sleep well the night before, those who do shift work, those who are on call in their jobs etc. - they also have to look after their 'spoons' / energy the next day as well.
During this explanation the girl was left with six spoons before she has even got to work and was told that when the 'spoons' are gone, they are gone and none can be bought back. She also explained 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.
In January/February when I was at my worst with the MS, and other times I have had relapses since then, that is when I really do abide by the 'spoons' theory and try and not do too much or else I run out of energy, but a nap during the day sometimes helps. Now a days, I do what I can and if I need to slow down I do, but I also realise that most people need to do this.
I am trying not to let MS get me, I am trying to 'fight it' but suppose it’s not really fighting it that I need to do, but live with it. I can never make it go away, it is always there, I may have to think about what I do at times because of that - I always have to remember my medication and then the injections weekly at the minute make me miss most of my Saturday, but I am getting up and going on and living my daily life with it - I don't want to consume my life and my thoughts - it does now probably 90% of the time but I am getting there - slowly but surely.
All of life is a learning process, with MS or not, it’s a learning process. I am learning to slow down as my body needs me to, but my brain/mind is not in cohorts with my body so am need to try and get these two to work together. I need to take one day at time, but I think this is the case for most people anyway - I just never thought that way before.
It’s weird how this blog post started out - I started out wanting to explain the spoon theory but then my mind kind of went another way. I hope that it’s not too much of a ramble and that it makes sense, well mostly anyway!
During the writing of this I found myself thinking that I use MS as an excuse at times, an excuse not to do things or to excuse myself to other people - but realise I don't need to, as people DO understand, those who know me and love me do understand well as much as we all can understand anything.
It’s sometimes hard to explain how it feels to be ill and what fatigue really does to a person. One woman who found this hard devised a theory called the spoon theory and helps explain what it feels like to the person who is ill and unable to do all they want to do because of fatigue and pain etc.
The woman in question had Lupus and over dinner one night her friend/roommate asked her how it felt to be ill and have Lupus. She was shocked as she thought her friend already understood as she had been there through the pain etc. After talking about pill, aches and pains the friend kept pursuing and was not satisfied with the answers being given. She was curious and wanted to know more, what it felt like to be sick.
The person with Lupus glanced around the table looking for help or guidance on how to best explain this to her friend to best explain every detail or every day being effected and give the emotions a sick person goes through with clarity.
At that moment the spoon theory was born. She talked about it in terms of Lupus, so am going to change Lupus to MS, but the theory suits any chronic illness.
She grabbed the every spoon on the table, all the spoons from other tables as well. Looked her friend in the eye and said "Here you go, you have Lupus/MS. Her friend looked at her confused at the spoons being thrown into her hands, but finally took the spoons.
She explained that the different 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, something I took for granted before MS.
Before MS, I started the day with unlimited amount of possibilities and energy to do whatever I desire (well will rephrase that and say before 2006... as that's when my health started to go down) For the most part I did not need to worry about the effects of my actions on my health.
For her explanation she used spoons to convey this point. She wanted something for the friend to actually hold, for her to take them away from her, since most people who get sick feel a 'loss' of life they once knew. If she was in control of taking the spoons away then the friend would know what it felt like to have someone or something else, in my case MS, in her case Lupus, being in control.
Her friend was asked to count the spoons, she asked why and it was explained that when you are healthy you expect to have an never-ending supply of spoons (energy) But when you have to plan your day, you need to know 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. But she was not allowed more as this was not a game. It is important to know how many spoons you had and not drop any...
She was asked to list off the tasks for her day, including the simple such as brushing her teeth and it was explained to her that each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, she was cut off and a spoon taken away.
And it is important to remember your medication as if you don't a spoon will be lost as, in my case, the pain would be worse without the pain medication which makes me tired.
Showering costs a spoon, as does washing my hair, bending for the breakfast cereal and bowl etc. would cost a spoon as well. Every little thing costs energy.
When I write this I know that it isn't just people who are ill that have to face this every day, but it’s mostly everyone, those who don't sleep well the night before, those who do shift work, those who are on call in their jobs etc. - they also have to look after their 'spoons' / energy the next day as well.
During this explanation the girl was left with six spoons before she has even got to work and was told that when the 'spoons' are gone, they are gone and none can be bought back. She also explained 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.
In January/February when I was at my worst with the MS, and other times I have had relapses since then, that is when I really do abide by the 'spoons' theory and try and not do too much or else I run out of energy, but a nap during the day sometimes helps. Now a days, I do what I can and if I need to slow down I do, but I also realise that most people need to do this.
I am trying not to let MS get me, I am trying to 'fight it' but suppose it’s not really fighting it that I need to do, but live with it. I can never make it go away, it is always there, I may have to think about what I do at times because of that - I always have to remember my medication and then the injections weekly at the minute make me miss most of my Saturday, but I am getting up and going on and living my daily life with it - I don't want to consume my life and my thoughts - it does now probably 90% of the time but I am getting there - slowly but surely.
All of life is a learning process, with MS or not, it’s a learning process. I am learning to slow down as my body needs me to, but my brain/mind is not in cohorts with my body so am need to try and get these two to work together. I need to take one day at time, but I think this is the case for most people anyway - I just never thought that way before.
It’s weird how this blog post started out - I started out wanting to explain the spoon theory but then my mind kind of went another way. I hope that it’s not too much of a ramble and that it makes sense, well mostly anyway!
During the writing of this I found myself thinking that I use MS as an excuse at times, an excuse not to do things or to excuse myself to other people - but realise I don't need to, as people DO understand, those who know me and love me do understand well as much as we all can understand anything.
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