I need help!!!!!!!!
| Posted: March 16th 2010 | |
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dancer21 |
Print Hey everyone! I am 15 years old and I have a complex I Mitochondrial Dissorder. I miss a TON of school because of it. I missed 2 months straight this year for an infection in my arm that needed 3 surgeries. Now my arm is "healed" but it still causes me a tremendous amout of pain. I also have numbess and tingling in it. I no longer see the surgeon or the ID doctors by my mom's choice so I don't know if this is normal to have 3- 4 months after the incidents occured. In addition to the arm my stomach has been acting up (vomitting, diarreah, pain) but again it is sort of dismissed unless it is very bad and I need IV fluids. I usually miss a few days of school per week due to GI issues. I take all honor level classes against the advice of some of my teachers because I am CAPABLE of doing the work I am just sick and I don't think I should be punished because of it. My family does not understand any of this. When I complain of something I am told to get over it, or that it is just in my head. sometimes i just want to scream. I just dont know what to do. I am not old enough to do anything on my own but I am tired of living like this. I know that with Mito not much can be done but there has to be someway that something can be done. Maybe not about my symptoms but about my family? Does anyone have any adivece on how to talk to family members and freinds about mito.
Sorry about the long and confusing rant =) |
You speak for all of us and
Submitted by Syd on Sun, 03/21/2010 - 4:00pm.
You speak for all of us and we allhave the same difficulty getting people and especially family to understand mito. You may feel like you are running into a stone wall. Sometimes others will communicate there is nothing that can be done, in any event, so it is not a problem after all. This hurts and few people underestimate the seriousness of their actions and words. So let me try to address this hurt and anger in peoples words and actions.
You may feel people are cutting you like with a knife when they tell you "to get over it, or it is just in my head." Your anger then is a reaction to these words. This words also hurt and can make you feel like you are bleeding to death and no one cares. This hurts, so you naturally react with anger. To understand this hurt and anger is to understand what is called the three R's --- resentment, reaction, revenge.
Resentment is the feeling that something is and was done wrong to you. This wrong hurts and it creates a reaction to the nasty statement or cold shoulder. And we all usually react with anger. Other times it can be expressed by self-pity --- "poor me." Revenge is the thoughts of getting back at people with words or action for this wrong.
The best way to describe the three R's is like a tongue on a sensitive tooth and I cannot keep my tongue off the sensitive tooth. The pain is continuous and the wrong words and action are contentious. And there I am again touching my tongue to the sensitive and sore tooth. My anger then just boils inside because of this deep pain and hurt.
What can help? A couple suggestions. There is the attitude of acceptance which means you just accept the pain, wrong words and actions other people do to you. This may be hard because of your age. Another suggestion involves a objective choice. Here you observe yourself moving from resentment to reaction. Just before the anger boils or just before you put your tongue on the sensitive tooth you allow yourself the ability to stop. And you can say something like, "Wait a minute, my anger/reaction is not doing me any good so I might as well drop it." Then you just simply make the choice let it go, objective choice.
This is hard stepping in between resentment and reaction. It takes a conscious choice to do it and more so a conscious choice to stay with it. The reason it is hard is because you can feel like the decent person who is/has been wrongly hurt. Once we feel hurt the anger then sets in and just boils. At this point it is extremely hard to let it go, yet it can be done.
Acceptance and making a choice to step between resentment and reaction is couple options I have learned. Life is not fair and maybe this is where your acceptance can begin.
Your presence is significant and I believe in you!