I know some of you are going through worse but....

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Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 1/9/2006 2:42 PM (GMT -7)   
I give up.  I know my seizures are much milder and more controlled than  alot of yours and I'm sorry, but I still have a right to be frustrated.  We all do. There is at least part of each day where my arm hurts like it does before a seizure.  But then there is no seizure.  Unless the pain is an aura and if an aura is a seizure that doesn't show, then I'm having them for extended periods of time each day or most days anyway. 
 
And for the past few months I have only been able to function if I sleep 10 hours a night and have a nap.  I work.  And am grateful that I can.  But I can't really, I just do it anyway.  I'm killing myself to do it.  I get home from one part time job and eat and sleep. Then I go to the next one and get home around 5:30.  I'm in bed by 8:00 again till 6:00.  Most people would be fine with my schedule but I don't know how much longer I can handle having no time to do anything I want.  I'm getting ready for  bed by 7:30.  That's only about two hours each night of time to get things done. And that is spent on the computer or doing a puzzle.  I need the computer groups I belong to.  There are several.  I need the support from them.
 
And I've got to keep this schedule at least for the school year.  It's never been like this other winters.  I used to be ok on 8 or 8 1/2 hours a sleep.  Now I spend all my time sleeping just to function and the last time I didn't get it I came close to throwing the dog across the room where I babysit.  I stay conscious during the type of seizure I have and it's only one part of my  body that I lose control of.  Although I do have other types of seizure, they still seem to want me to watch her.  So it's my judgement-I do know that if I started having ones where I fell or lost consciousness I would stop babysitting.  As it is I can still keep her safe and that's the important thing.
 
But I'm sick of never having time to do things because all I want to do is sleep.  I have had several neurologists tell me I've taken all the AEDs.  There are two I want to ask my next neuro about, namely Gabirtil/Tiagabine.  I've read about it in some other groups.  I have an appointment with another neuro next Monday.  What if he also tells me there aren't any other meds?  My last one left me feeling like I was being told 'Sorry, if you have a seizure there's nothing I can prescribe or do-you're on your own'.  I wonder if this one will have any ideas.  My seizures are ok now, I mean I can live with them.  But how do I live with knowing that if they get out of control again, there is nothing that can be done?  That's the part that upsets me.  The seizures may be mild but I still am stuck living with knowing that, according to some neurologists, I've taken everything and am out of luck if they get out of control.
 
I'm sick of being tired.  I want time! I want to be able to do things that are fun instead of knowing that if I do them instead of sleeping, I won't be able to get up in the morning, and even if I do get up, I spend the day cranky and rebelling against having bed times like a kid.  I want energy.
 
Anyway, I hope you are all doing good.
 
Uhura

Valour
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 1/27/2006 9:23 AM (GMT -7)   
Hi Uhara
Dont give up. I understand to how you are feeling. Up here in Canada it has been a brutal winter too. The meds and the seizures and the stress and the weather all affect us as does lack of sleep just as MandiAnn said. I take amitryptilline at bed for my migraines and I know it is a anti-deressant and it has helped me a lot. Talk to your doctor and see what they can do....explain that you are tired ALL the time and really frustrated with it all.....see what they can do to help. Take care, Sheena
Sheena
Somebody said...
(replace this text with what was said)
Semper Ubi Sub Ubi


babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/27/2006 12:37 PM (GMT -7)   
Uhara, I am so sorry that you are going through so much and yes, you have a right to hurt and express that as much as anyone. I know it sounds like "old hat" but I undrestand how you feel about wanting your life back. And honestly I can't imagine doing all that you and still going through all that you do. You should be proud of yourself for pushing forward the way that you have and working as hard as you do. I know that I admire and respect you for it and I'm sure that others do too. It's time to start doing it for yourself.

Many hugs-bb

coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 1/27/2006 1:54 PM (GMT -7)   
babybear said...
Uhara, I am so sorry that you are going through so much and yes, you have a right to hurt and express that as much as anyone. I know it sounds like "old hat" but I undrestand how you feel about wanting your life back. And honestly I can't imagine doing all that you and still going through all that you do. You should be proud of yourself for pushing forward the way that you have and working as hard as you do. I know that I admire and respect you for it and I'm sure that others do too. It's time to start doing it for yourself.

Many hugs-bb
 
Great post!
 
 

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 1/27/2006 5:26 PM (GMT -7)   

Keep on keeping on. We're all proud of you. Everyone knows how you feel. This is the worst winter ever for Kimmy. This weather here is weird, hot one day, freezing the next. They uped her meds last Monday and she still feels yucky. She says hang in there. If she can do it, you can too.

Beth B. in TN


Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 1/28/2006 10:12 AM (GMT -7)   
Thanks you so much for all your support.  It helps so much and means a lot to me.
 
Uhura

Tiffanie
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 6/13/2006 6:10 PM (GMT -7)   
 I know exactly how you feel . i feel the same way as if its blocking my life .
              & not being able to do other fun stuff because i'm worried about when i'm going to have a seizure or if i'm going to
 its hard , mad hard but i hope you get through it too. i'm just a 15 year old girl but i'm trying and i hope you are too !
 
- Tiffanie
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