Struggling with staying positive

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Does anyone else have trouble staying postive? i guess we all do. I've always been the one to say "it's okay i'll make it. It could always be worse" But here lately its whatever i dont even care about staying postive. I get so frustrated and angry. Im not even me anymore. Im really not sure how to fix it. I hang out with friends only because they'll worry if i dont. Im 16 and couldn't careless about dating someone. the bad thing is while im getting frustrated with myself my parents are frustrated with me. i keep forgetting things and not keeping up like i normally do. I've started procrastinating things like school work when i never would have done that before. my grades arent slipping only because im not in school i have a home tutor. My best friend last night just looked at me and said "what has been up with you? i know your going through hell but your not micaela anymore". Shes right. I want to fix it so bad but pain can be very consuming and i keep trying to cover it up and hide it from everyone cause i dont want pitty but people know what i've been through and they just say bless your heart. I dont want that.I was wondering if anyone else started changing into a different person.

i really would like to stay the same happy go lucky girl but im becoming a monster.

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Michaela,

I’m sorry you are having such a difficult time. It is very hard to stay positive. I’m sure a lot of us have been there. And with you being so very young, I know it is much harder. I just cry when I see young people suffering with this. Just don’t give up. I don’t know how many meds you have tried, but ask about others. And consider treatments if you haven’t done so already.

Liz

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I can certainly relate to the change in personality and character. Who you are inside will never change even if it doesn't come right through to the outside. I know its tough, but try to use the bits of you that are left and re-invent yourself.

Accept the fact that TN is part of your life and you, your family and friends will have to make room for it. Once everyone can make room for TN instead of fighting it - maybe more glimpses of the old Miceala personality will shine through not only the good days, but the bad ones too.

Having a chronic health condition can make a person evaluate the important things in life. That kind of evaluation can really make a person strong in character and make a person truly appreciate the good things in life. Don't focus on what you've lost. Try to focus on how TN has shown you what those important things are: A family who loves you unconditionally, the chance to go to school (yes your grades might be slipping, but you can still graduate if you stick with it), and good friends (after all, they are concerned aren't they?)

This sure sounds easy but its not. All we can do is continue to wake up each morning and tell ourselves that today is a new day. It might worse than the last one - but what if its better?

Don't kid yourself, I wake up somedays and don't want to get out of bed either. But we all have to keep trying. Keep in touch. I have a feeling you're still more happy go lucky than the monster you fear.

Elaine Iles

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Michaela,

We've talked about this before I think but unfortunately we do become shells of our old selves. But remember that TN is part of who you are now *as much as that sucks* And that people that are worth ANYTHING are going to love you regardless of what is going on with you. That's the whole point of love. If they don't care enough to be there for you, then well they weren't worth it in the first place.

I don't think any of us really want pity, because it's that whole "bless your heart" "you poor thing" that just makes you feel even worse. You're not becoming a monster... you're dealing with something that people many many years older than you are having to deal with... as evidence on this site. We're both kind of the youngins.

You're a strong girl to have dealt with this since you were 13... and because you're strong you'll keep the monster that's in you at bay. Your friends will come around... and that old Micaela will come out. Believe me I've fought with the whole *who am I anymore* thing. And this is just part of you... we all change with time and grow. While this isn't something that you necessarily want to grow... the old Micaela is still in there and will manage to make appearances..

Remember what I always say... Keep your head up girl. We're all here for you.

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You’re probably not the envy of your peers; ) Micaela, you should be!!! I am clueless as to how I would be dealing with TN +++ and then some at 16, and I’m out digits to go back that far.

“Pain can be very consuming”. PAIN consumes, if you let it.

Struggling…I just try not to do that as much anymore, most of the time. I’m grateful for that. I haven’t changed, I’ve always been sorta upbeat, perhaps off the wall.

Pity, but don’t dismiss! You have friends and we are not monsters. bob

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Hi Micaela,

I've only had TN for over a year now and i can seenow how much i have changed. Use to be the girl that goes out every weekend partying with friends and was very laid back. Now sometimes i find it difficult to get out of bed in the morning. So yes, i do sometimes find it difficult to stay positive.

I have lost alot of friends and even some family due to having this condition. I think some didn't believe me and others were fed up with me being in pain all the time. They didn't relaise that this was something you couldn't just turn and off whenever you felt like it. But in a way, this really has made me see about those that truly care about me and they are the only ones i want in my life now.

I also have a little daughter who is 15 months so she gets me through the hard times.

Like others have said, TN is something you're going to have to accept as being part of your life now. Easier said than done, i know. And getting on the right meds can really help with helping you be you again. Even if just for a little while.

Take care

Una x

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Thanks to all i really needed to hear a lot of the things yall said. I know i’ll be okay just sometimes need to vent. we all have our good days and our bad and i know the old me will make appearances soon. When it rains it poors. But there is always that light at the end of the tunnel and im just waiting on my day to come back and shine and make progress instead of slipping. Thanks to you all again i appreciate and thank god for you everyday

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Dear Micaela,

I do not know the type of pain your going through, or the struggles that you go through on a daily basis. But I do see different things like how this can be consuming, how it can change you. But you know you're going through more than just this disorder. Im sorry I said that your not yourself anymore, but you know Im blunt, and don't sugar coat anything. Im sorry. I just have said that a little bit different... I know that you're going through SOOO much right now, and have been and will be for a very long time. But you know I will always be here. I just wish I could take away some of the pain away even it is just for a day or an hour I would. I know you wouldn't let me but I would fight you for me to be able to do this. If no one understands what you are going through enough to let you be "not okay" for awhile then you don't need them in your life. You shouldn't have to cover it up, or hide it from anyone. I know that you don't want anyone to see you weak but babe your family is family, they are suppose to be there for you when no one else is. Its okay for them to see you so called "weak". Even though if you broke down crying I wouldn't see you as being "weak" Id see a 16 year old( really 30) dealing with her pain for once in her life. Finally taking another step to being stronger than ever. Being strong isn't always about dealing with the problems and not crying and not letting pointless stuff get to you, or stuff that actually means the world to you, get to you. Its also about crying and letting yourself become "weak". That is how you become stronger, If you never let yourself become weak for a little bit then how can you become stronger? How will you ever know that you are actually strong? If you've never been weak? Even if you don't let ANYONE see you weak, that is fine. You don't have to tell anyone anything that you don't want them to know. If you don't even wanna tell me that you have been so called "weak" don't. You keep saying when I seen you have that attack saturday night that you wish I didn't. Well I don't, Im glad I seen it. Im gald I was there for you, I know I couldn't do anything but hug you and just I guess wait out the attack but it helped me seen what you go through. & it sucks. I don't pity you at all. I just want you to know that. I love you too death babygirl.

Love , your best friend.

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Thanks tiff. i know that your cool with it and you understand but you know me…and dont apologize for being blunt or not sugar coating anything thats the way i want to to be 24/7. You know i’ll get better…eventually. maybe not the pain but all the other stuff i will. After nana dies will prob. be my worst point. stress makes the pain shoot through the roof. Thanks for being such an awesome friend tht u make yourself a profile on this site. thats pretty cool. You know me cow girls dont cry. lol. i know i can cry and stuff but its not my first reaction…remember when david died? girl you wrote a book i cant think of that much lol but i love you to pieces thank you i consider you a blessing

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No need to thank me. I have faith that you will get better. I do believe after nana passes you will be able to let yourself deal with everything that is going on. Maybe you need to go to your doctor and see if he will give you like de-stress pills? I don’t know. Thank you for letting me be there for you, thank you for being such an awesome person when you don’t have to be. I believe that is in your blood (: & yes cowgirls don’t cry. Yeah I remember when David died, but you felt that you had to be strong for your family and I understand that. I would have felt the same if it would have been in my family, but you HAVE grieve at some point. Yeah I know I can type a lot you should know this due to facebook and text messages. I have a lot to say about this subject. (: Im a psychologist remember?

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Micaela,

Absolutely, there is no doubt that it is a struggle to stay positive whenever you are in a pain. I have a 15 year old daughter. I cannot imagine her having the emotional stability to be able to handle what you are going through. You say that your parents become frustrated with you because of your procrastination. I have a daughter who gets frustrated with me due to things that I do not get to as quickly as I used to . I may not always feel like taking her to the mall or movies with her friends. I used to be the Mom who all of her friends loved. I loved to take kids places to experience things and make memories together, such as haunted houses, interesting restaraunts, etc. Now, I am having a hard time, with everyone but my fiance and my Dad (who have taken the time to fully understand my disorder) making anyone understand why I am not the same. It does change you. I think that the only choice you have, is to embrace the person you are at the moment, knowing inside that you are the same girl . . . .the girl you were is having to deal with a different set of circumstances and this is how she is reacting to it and it is natural. You are facing a challenge that most people will never have to in their lifetimes.

There are so many options for people suffering, like us, and many success stories out there. It seems that we are the ones having to educate doctors, in some cases, on what will work to relieve the pain. I have read so extensively on the subject. I feel as if I know more about it than any physician I see.

When people say, bless your heart, they really mean it. I will pray that you are blessed with the ability to take control of your situation. You are young, so being taken seriously will be even more of a challenge than it is for us older folks. But, do not let your pain be dismissed! Keep drilling at whatever resources you have at your disposal until you find some relief. If you become a monster, you become a monster. Perhaps that determined little monster will stand up to anyone in the way of finding the cocktail of meds, or the surgical intervention that she needs to get as much relief as possible, so she can grab life by the tail again and come back to being as close to that happy go lucky girl you enjoy being!

My personal advice would be, don't hide your pain! This is a major problem and it need to be addressed to the fullest potential, you have so much life in front of you! A problem hidden, is a problem which may go unsolved.

It is easy to forget things when you are in intractable pain. Don't kick yourself. Let your parents know what is happening. I hope that you find the understanding and comforting support that you need to keep plugging until you find the treatment (and it may take a lot of effort, I'm not kidding you when I tell you it is a challenge) which will relieve your pain, and restore you back to the person you want to be.

You will definitely be in my thoughts and prayers.

Take care and remember, do not let you pain be dismissed! It's hard, and your suffering, but now is the time to fight this monster. Sometimes it takes a monster to fights a monster . :-)

Feel free to write, vent or rant or talk to me any time.

Stef

P.S. Like usually, I just zinged this out, because I type faster than I talk and must go cook dinner now. The pain is coming back. It is time for my medication, I know this. I'm still fighting myself, but getting closer to normal. Anyway, forgive any type-o's I made in this. It came straight from the gut. No time for editing.