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Bad Week And It's All My Own Damn Fault..


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#1 BaRb79

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Posted 11 June 2009 - 02:22 PM

I have a huge problem with being told what to do aka CONTROLLED!!
I have been "forgetting" my meds alot this week. I have to say I hate, HATE being forced to sleep. Why do I hate that so much?? I hate when I don't take my meds that I lose control of my body.. I have serious control issues I guess. I guess it's no different than a epileptic they for some reason chose or forget to take their meds and what happens they have a seizure. Well I'm no different if I chose not to take my meds or test my body to see how many I can get away with not taking then I'm going to experince cataplexy attacks. I'm not trying to complain just mad at myself today. I've had probably 25-30 attacks in the last week and it's my own fault. I need to take the meds that help so very much. I guess I've been rebeling against myself. Does anyone else ever feel like this. I love feeling myself fall alseep which my family thinks is crazy. but I do. I'm being stupid..I'll get over this and plan on taking my meds tonight and already took my effexior so things should be gettting back to my normal..
thanks for letting me rant.

#2 WillWork4Latte

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Posted 11 June 2009 - 09:07 PM

Sorry to hear that you had a tough week. Hope things get better for you soon...hang in there!! wink.gif


QUOTE (BaRb79 @ Jun 11 2009, 02:22 PM) <{POST_SNAPBACK}>
I have a huge problem with being told what to do aka CONTROLLED!!
I have been "forgetting" my meds alot this week. I have to say I hate, HATE being forced to sleep. Why do I hate that so much?? I hate when I don't take my meds that I lose control of my body.. I have serious control issues I guess. I guess it's no different than a epileptic they for some reason chose or forget to take their meds and what happens they have a seizure. Well I'm no different if I chose not to take my meds or test my body to see how many I can get away with not taking then I'm going to experince cataplexy attacks. I'm not trying to complain just mad at myself today. I've had probably 25-30 attacks in the last week and it's my own fault. I need to take the meds that help so very much. I guess I've been rebeling against myself. Does anyone else ever feel like this. I love feeling myself fall alseep which my family thinks is crazy. but I do. I'm being stupid..I'll get over this and plan on taking my meds tonight and already took my effexior so things should be gettting back to my normal..
thanks for letting me rant.


#3 BaRb79

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Posted 12 June 2009 - 04:53 AM

QUOTE (WillWork4Latte @ Jun 11 2009, 09:07 PM) <{POST_SNAPBACK}>
Sorry to hear that you had a tough week. Hope things get better for you soon...hang in there!! wink.gif


Thank you!
I'm feeling better..

#4 greatbig47

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Posted 12 June 2009 - 07:53 AM

Barb,

With meds, I think we like to see how they are going to react under different circumstances. We "test" them in a way. Most of these meds don't have a universal effect on people. Effexor was HORRIBLE for me, but it probably works great for you.

Effexor is one of those meds that they tell us has to "build up" inside of us to be affective, but us humans like to see what the stuff does to us at different times.

Don't be hard on yourself for merely trying to see what happens... It's our bodies...our choices...our decisions. It sounds like you were just trying to be without for awhile, and finding out what is best for you.

You'll get the right mix...you'll see wink.gif

#5 Lais02

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Posted 12 June 2009 - 12:49 PM

QUOTE (BaRb79 @ Jun 11 2009, 01:22 PM) <{POST_SNAPBACK}>
Does anyone else ever feel like this. I love feeling myself fall alseep which my family thinks is crazy. but I do.


I know exactly what you mean. I'm on Xyrem now and I rarely take a nap. When I wasn't treated correctly for my N yet I loved the way it felt to take a nap. Curling up in my bed and then the most peaceful feeling in the world when I could finally go back to sleep. lol It sounds crazy since I hated sleeping all the time, but the way it felt to go to sleep was amazing. smile.gif

Barb- rant away anytime on here smile.gif

#6 stardust

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Posted 12 June 2009 - 04:52 PM

Hey, I've never taken that medication before, but I know in a way what your talking about when you said you "hated to be controlled." Me to! For me it the fact I don't like having to always be in bed at 10 ever night. I'm taking Xyrem so every morning like clock work I wake up at 6:00am whether I want to or not.

Like someone else was saying we’re human! I don’t know your doctor, but I do know everyone’s different no matter what some study says. I may not know you, but I do know that you have to take the dosage at whatever level works best for your body. By the way how many different types of medications have you tried? I’d like to know what’s the average number of tries it takes people to finally get to the right medications for them?



#7 Mike M

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Posted 13 June 2009 - 12:02 AM

QUOTE (stardust @ Jun 12 2009, 04:52 PM) <{POST_SNAPBACK}>
I don't like having to always be in bed at 10 ever night. I'm taking Xyrem so every morning like clock work I wake up at 6:00am whether I want to or not.


I was just writing about this elsewhere tonight. For me it is 10 PM (although I am clearly being naughty tonight) and 5:30 AM. I had two nights in a row once when I missed my 1 AM dose and both times I awoke exactly at 3:21 AM. Clockwork and control - bleah! I am with Lais02, we all deserve a good rant from time to time.

#8 BaRb79

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Posted 14 June 2009 - 09:39 AM

QUOTE (stardust @ Jun 12 2009, 04:52 PM) <{POST_SNAPBACK}>
Hey, I've never taken that medication before, but I know in a way what your talking about when you said you "hated to be controlled." Me to! For me it the fact I don't like having to always be in bed at 10 ever night. I'm taking Xyrem so every morning like clock work I wake up at 6:00am whether I want to or not.

Like someone else was saying we're human! I don't know your doctor, but I do know everyone's different no matter what some study says. I may not know you, but I do know that you have to take the dosage at whatever level works best for your body. By the way how many different types of medications have you tried? I'd like to know what's the average number of tries it takes people to finally get to the right medications for them?


Xyrem, provigil, Effexior
they work....when i take them like i should lol

#9 Marcianna

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Posted 16 June 2009 - 01:56 AM

I absolutely know what that is like. I played the rebel for like....uh.. 8yrs now. it was going pretty well too. but seems I got worse as I got older now I am looking into med options i will feel comfortable with. Im a little opposite though... I hate the fact I have to take drugs to "deal" with life. I would rather have symptoms I will expect than random drug side effects...=/ so its a hard road I guess....

#10 BaRb79

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Posted 16 June 2009 - 09:47 AM

QUOTE (Marcianna @ Jun 16 2009, 01:56 AM) <{POST_SNAPBACK}>
I absolutely know what that is like. I played the rebel for like....uh.. 8yrs now. it was going pretty well too. but seems I got worse as I got older now I am looking into med options i will feel comfortable with. Im a little opposite though... I hate the fact I have to take drugs to "deal" with life. I would rather have symptoms I will expect than random drug side effects...=/ so its a hard road I guess....


I guess it's just hard to face this is a Lifetime thing instead of lets say a broken leg your down 6 weeks and then usually back to normal..I'm finding out that my feelings about it are up and down most days I'm great about it but just like everyone else I have my bad days..
smile.gif

#11 Marcianna

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Posted 17 June 2009 - 04:11 AM

I work online with alot of people with various disabilities and it is extremely common (even normal) to get so frustrated with ourselves even down right depressed. I think it is especially hard with people with N because we look "normal" so we try so hard to keep up that persona, even though we really are not. Depression, anger, even Jealousy comes with it. I have known about my N for nearly ten years. I spent the first four in total denial and Drank ALOT. Even after I finally accepted my fate, and have become more active in helping others, I still get royally mad about it. Especially here lately, with my new Dx's of fibromyalgia and sleep apnea on top of all this in addition to some other major health concerns. I have that whole "Good god now what?!?!?!?" kinda of thing happening. it sucks.

All any of us can do is the best we can. And try to be there to help each other as we go through the journey. As much as we may dislike it, this is the road we will travel from here on out. Even though we may not know where we are going, try and remember to do your pit stops.... it helps keep you from running out of Gas unexpectedly.

#12 Irishhh

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Posted 19 June 2009 - 09:10 PM

I don't think there is anything wrong with being mad at all. Being mad at you or being mad at the meds. Either way, you are experiencing and emotion. You can't deny your emotions, you are what you are, you feel what you feel. Let it be. If you don't it will build up anyway and come out most likely at the wrong time.

I can relate to you with the control issue. I never drank like all my friends did because I didn't want to not be in control of my body and my mind. I wouldn't take antidepressants for a long time for the same reason. I didn't want to be called bipolar b/c they'd put me on crazy medicines that would make me someone else. I didn't want to do a sleep study because I knew they'd try to make me take medicines... Even though I knew I needed it.

Well, here I am. Not taking medications because of what they do to me. I don't feel any better, I just feel as bad in a different way. I've been wanting to go to the doctor though to try something... but I've been looking for herbal remedies, vitamins, the combination of diet and this stuff etc to make myself better. It doesn't seem to be working.

I don't want to resort to medication, just like you. Even though we both know it can be helpful if we get the right things.

Testing your meds isn't bad, just don't do it all the time. After you try it, eventually you'll figure out what works, and it may be frustrating along the way. As long as you aren't hurting yourself, I don't see the problem it trying this. Narcolepsy is universal, but it's still very individual. You do need to experiment for yourself. It doesn't help I guess that we all have better and worse days, so who knows if our experiments will make sense anyway. but we do what we need to do, b/c it helps us for whatever reason. Whether it is mentally because we are in control, or physical because we've taken the right medicines.

I have a problem with control and medication, but that's because of watching my mom as I grew up. She takes a bunch of narcotics and has for a long time, she's been on this and that and this combo and that one, blah blah blah. It's made her many different personalities and it was never easy to deal with. I never wanted to be like her... and now here I am. Needing medications to make it through my day. Perhaps that is why I'm doing what I am... Not taking any at all. Trying to prove I can do this. What am I thinking? God...

Thanks for this post, you helped me too... Just by posting this, you've made me really think.

#13 BaRb79

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Posted 19 June 2009 - 09:50 PM

I hope you find some relief. I can totally relate to not wanting to do the same things your parents did.. It sucks because parents abuse drugs or just decide to leave one day and this is what happens..We (their children) become so obsessed about not being like them we being to let it rule and change our life. So I've decided I know I'm not them..I've become a better person because of their mistakes and sounds like you have too. Don't let their flaws how you back..If you feel you need medication then talk to your Dr and "explore" that option. I'm not saying meds are for everyone but...Dont let someone elses bad decisions "CONTROL" your life. Make sense?? You will find what works for you too. Your post really helped me too. ty
ty all... biggrin.gif