I am patient of congenital muscular dystrophy. This disease is affected by gene, so I am born to get this disease. No treatment is available now.
This disease affects my muscle which can be controlled by mind. For example, hands, arm, leg, thigh, chest, abdominal muscle. So many movements need muscles to join, so it can cause great impact of patient.
I don't know whether or not it can affect my muscles which cannot be controlled by mind. Some type of muscular dystrophy can affect that kind of muscles.
Because of that my quality of life is affected. How much of money will you accepted to sell your life quality out? The things you love to do, movement, running, independency, lung capacity, comfortable breathing, comfortable sitting without feeling stretch of your muscle. Wake up yourself without anyone help you pull you out from bed (I cannot even do a sit-up, walk, even if I use my hand, I cannot even do a "sit-up" too).
Due to my disease, my daily life is affected.
One of them is independency. It is strongly affected by this disease.
I google how a muscular dystrophy patient live independently. All of result I get are they need other's help to live. I can find no ways to live independently for a muscular dystrophy patient.
Taking care of myself becomes one of problem.
For example, I need people help to wash my body.
I need people help to move to another position. From bad to wheelchair, sometimes I need help to across stairs.
I need people to take out of trash for me.
I need people to wash somethings for me, for example clothes and dish.
I cannot even open a bottle or can.
I don't have enough strength to carry somethings heavy or pick up somethings on the ground.
Due to the disease, I have lost ability to do somethings I love.
Singing is one of them. I enjoy singing but I am not a good singer, I tried to learn how to sign and improve myself. Originally, I can reach D4 with great difficulty. After a lot of times, I can reach to E4 easier or sometimes higher note. But the disease affects my breath, since you need muscle to take park in when you breath. I have low lung capacity and I don't have enough air for me to use.
Playing online game is one of them too. Some game need fast reaction, for example shooting game. I need to aim quickly on opponent and some game have design for recoil of gun I need to keep moving my mouse down to control sights against recoil, or sights will keep moving up. The problem is that sometimes even if I discover opponent first, I cannot kill them due to my hand cannot control my mouse stably and quickly. In this kind of game even if lose a very short time and accuracy in this whole process can make the character I control die in the condition that I supposed to kill characters other player controls.
Deterioration of my body is another problem. The condition of disease is keeping wasting of muscle, I don't know when will stop or get better.
I think that I have no future. There is nothing look forward to in my life.
I don't know with this kind of body what jobs can I do or how long can I do.
It seems that I cannot have a romantic relationship. Since I cannot even take care of myself how can I take care of others. And in this kind of situation who will like me.
Since aforementioned limited making a friend can be a problem too. To make other people like people himself or herself. Sometimes people need to join some activity with others or do somethings interesting which shared between others. Or have some good things that associate with people himself or herself. Or collaboration, mutual help with others. Or being attractive. I have limited ability to fulfill this process now. I cannot join sport team, or club due to my body or lack efficiency of schoolwork. I have limited good things association with myself and this factor along maybe cannot have enough effect to make people like me if other factor is not strong enough. Sometimes, I just don't have enough ability to help others since I cannot even take good care of my own business, how can I help others. I am not attractive.
I want faster learning speed. My professor told me that university is like all you can eat restaurant. In all you can eat restaurant some people tend to eat as much as they can since the price is the same. That is mean that I should learn as much as I can since the price is not so different. Even if I learn or take a lot of classes more the price dose not become a lot of more expensive. That is too say if I learn more, I earn more benefit. But my learning speed is low. I hope that my efficiency can increase to desirable level. I hope that I can good at learning.
I face the problem that I spend more time study and gain less than others.
I have low self-esteem due to the quality of myself.
I hate myself.
My appearance is not so good.
My abilities need to be improved too.
Sometimes, I envy on other people's lives. That will be so good If I am other people I want to be. This kind of envious thought suck people's energy.
My classmates and some people in campus are young. And some of them have attractive appearance. Nice body, good looking face, beautiful legs, nice clothes, sexy, etc. For some young male, it is desirable to see some attractive young female. But for me, sometimes I feel sad, that will be so good if I have that beautiful appearance too.
Some of my classmate have great ability to do things. Quickly learn somethings and do somethings good or create somethings and complete schoolwork quickly. I want it too.
Some people just popular. I want to be popular too, sometimes I just feel so lonely.
Some people live happily. I just want to be happy too. But I am not happy with my life and somethings negative.
I want a healthy body too.
I think I have no future, so I want a bright future too.
Although there is no evidence shows that someone must be have romantic relationship to be happy, but it will be so great to fall in love with each other. So, I want romantic relationship too.
I just want to be loved. Sometimes due to the stressful environment and negativity of caregiver and family. Sometimes people can be bad tempered, and talk to you bad temperately, I really don't like that.
Sometimes I lack motivation to keep myself alive, I want to die in my sleep, I don't even want to wake up next morning.
I am struggling to killing myself due to other reason for example religion, accessibility of material, survivor instinct, fear.
In my religion, legend has it that those who kill themselves will be punish by deity. Although I don't know whether it is true or not, I am just afraid.
I have difficulties to access material that need to be used in order to kill myself.
For example, Nembutal and anti-vomiting medicine or another peaceful pill. Nembutal and anti-vomiting medicine cost 600 dollars to buy. I don't have that much money. Another drug cost money too.
To buy a rope, I have to go to store or ship, people will notice that. And if I use rope appeared in my daily life, people may discover.
I am so afraid.
I am so afraid that the process of suicide fail, since the aftermath of suicide attempt can be horrible.
I afraid that the detachment of rope, since it can cause partial suspension hanging fails.
I afraid that I tie the knot incorrectly, since it can cause fails of partial suspension hanging.
I afraid that broken of rope itself, since it can cause fails of partial suspension hanging.
I afraid that I separate from rope accidentally, since it can cause fails of partial suspension hanging.
Survive instinct is another problem.
Sometimes I just have unidentified power of resistance when I actually may have chance to kill myself, but I lost it. I think it is because aforementioned reasons, but I think there are another unidentified power of resistance too.
This disease affects my muscle which can be controlled by mind. For example, hands, arm, leg, thigh, chest, abdominal muscle. So many movements need muscles to join, so it can cause great impact of patient.
I don't know whether or not it can affect my muscles which cannot be controlled by mind. Some type of muscular dystrophy can affect that kind of muscles.
Because of that my quality of life is affected. How much of money will you accepted to sell your life quality out? The things you love to do, movement, running, independency, lung capacity, comfortable breathing, comfortable sitting without feeling stretch of your muscle. Wake up yourself without anyone help you pull you out from bed (I cannot even do a sit-up, walk, even if I use my hand, I cannot even do a "sit-up" too).
Due to my disease, my daily life is affected.
One of them is independency. It is strongly affected by this disease.
I google how a muscular dystrophy patient live independently. All of result I get are they need other's help to live. I can find no ways to live independently for a muscular dystrophy patient.
Taking care of myself becomes one of problem.
For example, I need people help to wash my body.
I need people help to move to another position. From bad to wheelchair, sometimes I need help to across stairs.
I need people to take out of trash for me.
I need people to wash somethings for me, for example clothes and dish.
I cannot even open a bottle or can.
I don't have enough strength to carry somethings heavy or pick up somethings on the ground.
Due to the disease, I have lost ability to do somethings I love.
Singing is one of them. I enjoy singing but I am not a good singer, I tried to learn how to sign and improve myself. Originally, I can reach D4 with great difficulty. After a lot of times, I can reach to E4 easier or sometimes higher note. But the disease affects my breath, since you need muscle to take park in when you breath. I have low lung capacity and I don't have enough air for me to use.
Playing online game is one of them too. Some game need fast reaction, for example shooting game. I need to aim quickly on opponent and some game have design for recoil of gun I need to keep moving my mouse down to control sights against recoil, or sights will keep moving up. The problem is that sometimes even if I discover opponent first, I cannot kill them due to my hand cannot control my mouse stably and quickly. In this kind of game even if lose a very short time and accuracy in this whole process can make the character I control die in the condition that I supposed to kill characters other player controls.
Deterioration of my body is another problem. The condition of disease is keeping wasting of muscle, I don't know when will stop or get better.
I think that I have no future. There is nothing look forward to in my life.
I don't know with this kind of body what jobs can I do or how long can I do.
It seems that I cannot have a romantic relationship. Since I cannot even take care of myself how can I take care of others. And in this kind of situation who will like me.
Since aforementioned limited making a friend can be a problem too. To make other people like people himself or herself. Sometimes people need to join some activity with others or do somethings interesting which shared between others. Or have some good things that associate with people himself or herself. Or collaboration, mutual help with others. Or being attractive. I have limited ability to fulfill this process now. I cannot join sport team, or club due to my body or lack efficiency of schoolwork. I have limited good things association with myself and this factor along maybe cannot have enough effect to make people like me if other factor is not strong enough. Sometimes, I just don't have enough ability to help others since I cannot even take good care of my own business, how can I help others. I am not attractive.
I want faster learning speed. My professor told me that university is like all you can eat restaurant. In all you can eat restaurant some people tend to eat as much as they can since the price is the same. That is mean that I should learn as much as I can since the price is not so different. Even if I learn or take a lot of classes more the price dose not become a lot of more expensive. That is too say if I learn more, I earn more benefit. But my learning speed is low. I hope that my efficiency can increase to desirable level. I hope that I can good at learning.
I face the problem that I spend more time study and gain less than others.
I have low self-esteem due to the quality of myself.
I hate myself.
My appearance is not so good.
My abilities need to be improved too.
Sometimes, I envy on other people's lives. That will be so good If I am other people I want to be. This kind of envious thought suck people's energy.
My classmates and some people in campus are young. And some of them have attractive appearance. Nice body, good looking face, beautiful legs, nice clothes, sexy, etc. For some young male, it is desirable to see some attractive young female. But for me, sometimes I feel sad, that will be so good if I have that beautiful appearance too.
Some of my classmate have great ability to do things. Quickly learn somethings and do somethings good or create somethings and complete schoolwork quickly. I want it too.
Some people just popular. I want to be popular too, sometimes I just feel so lonely.
Some people live happily. I just want to be happy too. But I am not happy with my life and somethings negative.
I want a healthy body too.
I think I have no future, so I want a bright future too.
Although there is no evidence shows that someone must be have romantic relationship to be happy, but it will be so great to fall in love with each other. So, I want romantic relationship too.
I just want to be loved. Sometimes due to the stressful environment and negativity of caregiver and family. Sometimes people can be bad tempered, and talk to you bad temperately, I really don't like that.
Sometimes I lack motivation to keep myself alive, I want to die in my sleep, I don't even want to wake up next morning.
I am struggling to killing myself due to other reason for example religion, accessibility of material, survivor instinct, fear.
In my religion, legend has it that those who kill themselves will be punish by deity. Although I don't know whether it is true or not, I am just afraid.
I have difficulties to access material that need to be used in order to kill myself.
For example, Nembutal and anti-vomiting medicine or another peaceful pill. Nembutal and anti-vomiting medicine cost 600 dollars to buy. I don't have that much money. Another drug cost money too.
To buy a rope, I have to go to store or ship, people will notice that. And if I use rope appeared in my daily life, people may discover.
I am so afraid.
I am so afraid that the process of suicide fail, since the aftermath of suicide attempt can be horrible.
I afraid that the detachment of rope, since it can cause partial suspension hanging fails.
I afraid that I tie the knot incorrectly, since it can cause fails of partial suspension hanging.
I afraid that broken of rope itself, since it can cause fails of partial suspension hanging.
I afraid that I separate from rope accidentally, since it can cause fails of partial suspension hanging.
Survive instinct is another problem.
Sometimes I just have unidentified power of resistance when I actually may have chance to kill myself, but I lost it. I think it is because aforementioned reasons, but I think there are another unidentified power of resistance too.
Last edited:
