i've bottled everything up for too long im typing this in attempt to let it out
the pain is so distracting no one can see or understand the pain unless you have it. i feel like giving up sometimes and then other days its not an option. i would love to just never move to avoid the pain as much as posible but at 16 this is irrational choice so i just do. and do and do. every day constantly pushing constantly fighting and no one gets it. its so exahusting to put on my smile every day when all i want to do is hide. the drugs make me zombie like and i've tried a few this one works the best however the dose isnt nearly high enough for what i need but i fear not being able to function if i get it to the right mg. the past 5 months of my life have been a living h***. everyone says that im strong and mom says im heartless because i dont cry. I would be what i like to call strong if it wasn'tfor tn. so has what i persive as strength turned to having a cold heart? i dont cry anymore cause it just makes the pain worse so at somepoint i forgot how to cry i just bottle things up and dont know how to let it out. i stood at my cosins funeral after he commited suicide holding my grandmother and didnt shead one tear. so maybe i am heartless or maybe i come across that way but i made up my mind a long time ago that this disease would not beat me that i would fight and fight. little did i know how tireing it would become. after 3 brain surgeries and 1 round with the gamma knife and faceing another one i wonder if i'll ever be fixed. its hard to concentrate in school i sometimes dont even hear my friends talking to me and they are starting to notice. im distant almost isolated. i cary on the fake hussle of constantly doing like i never missed a beat but i did im so far behind in some aspects but so far ahead in others. i felt like i became a new person over night. every one has there lisence and there jobs and cars and boyfriends and im left in the dust. not that those things are important too me there not and thats what scares me the most. im not normal. thats all i want is to be able to move at a normal pace but i've experianced more in 5 months than most have experianced in 20 years or a life time. not that its all bad i have my family whom i adore for there support but even they dont understand. my bestfriend trys to but my pain and hers are on different levels but bless her for trying. oh well i'll keep fighting till i cant anymore then i'll fight somemore after that still. i'll keep pushing cause lets face it what else can i do. oh well if you made it all the way threw this rant bless you for your patience.
No, crying does not make you heartless . . . I too feel alot of pain after I cry so I have learned to not do that cause the pain is not worth it after so I stay strong to stay strong. Yes you will fight some more even when you can't and then more after that . . . shows how strong you are and thats what we do to get by. I admire you and your character so young but yet so filled with wisdom in alot of ways. Patience I have alot of and it helps when those around me don't have a clue what I'm dealing with. Keep strong and continue the fight because it may get better for you and you are needed.
Hugs and prayers,
Tracy
Thanks tracy its just that people who know me best tell me if i cry i’ll feel better when i know i wont. cause pains up and that doesnt help anything. but yes someone on this sight once told me that sometimes it takes a monster(me in this case) to fight a monster(or tn) patience im learning quickly. thanks for the hugs and prayers. bless you for reading the book that i posted
Hi Amanda.
It's hard for those around us because they do not understand what we go through. And they don't know what to do to help, and sometimes they say what sounds like inappropriate things. They mean well, but sometimes their actions are...strange. Just remember that these people love you, and they are doing what they can. They just don't know what to do with this situation, so sometimes their efforts seem awkward.
How is your pain now - any better at the end of this week? There is definitely a balance between somewhat comfortable and being a drug zombie. And that line is different for everyone. It sounds like you have a good handle on what your limits are. That helps us to stay functional - or at least somewhat functional. The fake smiles aren't all bad when you consider the alternative is to be negative all the time. I know it doesn't come easy, but those smiles and your efforts to maintain a "normal" life are a positive step. Your are a strong girl - tears or no tears. Keep your chin up and hang in there. You are an impressive teen!
Hugs,
Leslie
Amanda Have not talk to you for a while now But from time to time I read what you , type. You are a very special girl . I know it feel’s like you are missing being with your friend’s and feeling well enough to keep up with them. You are so luck to have a understanding best friend who followed you here on this line,I whish we all had a support line where we lived , to share time togeather to meet each other or just dinner or a movie night.do you have that where you live. I know these med’s make us like a zombie . But hopefuly we get on the right level’s where we can function. You have showed so many the way After all Im Right behind you, You are a amazing girl and I Pray you get better Soon. Shirley
leslie: thank you so much. and i really try ot understand and i know they do the best they can but sometimes it hard to explain the pain wont stop this is a monster i will have to fight. but your right in not being negaitive. that is one thing i never want to become, and empty negative shell of the happy go lucky girl i once was. and as of now my pain is bad the winds up here and that makes for very uncomfortable days. my meds. are kinda making me zombie like i dont notice it as much as everyone else. they say im in slow motion i guess slow motion is better than no motion. but thanks for the support.
Shirley: thank you for your positive words. and yes i am blessed to have a bestfriend who is patient with me on my hard days. shes been the best. and no i've never heard of a group for tn in my area. and yes the medicines are needed but also an opsticle at the same time. thanks again
im praying for you both and i pray that this pain will end very soon for the both of you. god bless