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11 years and counting

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My feelings today


15 years ago 0 910 logo logo logo logo logo logo logo logo logo logo 0
Hey Cammy,

I think it is great that you are searching for answers, figuring things out for yourself and even getting doctors involved. I think it is important to make sense of things and figuring out what hit us. But I think WildCat and the moderators have also offered you great insights and advice on things you can do for yourself in the Now to help yourself. I have little advice or insights to offer that have not been said up to now. But I did want to reiterate that we are all here for you to help you through this! Hang in there!
15 years ago 0 80 logo logo logo logo logo logo logo logo logo logo 0
When I say, Why dont I end things now??  I am often thinking back to the Mork and Mindy show of the 1970's.
 
I dont know who was who, but Robbin Williams played the earthling visitor.  When he was talking to  his "superior" he was asked-  If heaven is so beautiful, why dont people just rush out and try to get there?"  
I dont remember exactly the answer (Mork I think)((Robin Williams) but it was something along the lines that things are also nice here, so why rush.
 
There is truth to that, and I do try to find something "nice" about "today". I am also scared about "rushing" to the other side, even though I know it is nice.

15 years ago 0 80 logo logo logo logo logo logo logo logo logo logo 0
Challenge my negative thoughts??  I cant do that yet.
So much went wrong in those years.  
 
I remember lying on my bed,  it was a beautiful March day, full of brilliant sun.  My mother was talking to the doctor about me not getting better.  I remember my mother saying"  We're too far out of the city for you to come out and see him" and so the doctor never came out.  As she said that, ,me lying in total misery, I remember thinking,  please, please come, but it was not to be.  There were times I felt so miserable I wished I could have passed out, instead, the only thing I could do was close my eyes and try and sleep.    When I was finally driven to the hospital,  it was a drive through hell. Not only was I leaving the house forever, but I felt miserable.  I spent over a week in hospital, miserable as heck. When I finally got out,  I was so weak I could hardly walk.  On top of all that, I had to go to a "new" house.  That meant a new school , to finish the 8 weeks of yr7.  I tried so hard to change and be positive.  I tried so darn hard.  Summer came and no friends to play with.  Spent my own time on my bike riding around.  September came and another school, the boys private school.  In that first month I remember thinking that I was so far behind, the new school system was much further ahead than I was.  In reality, I think I had "lost" much of the information I had gone over in yr7.  Add to that,  physically I was changed.  I could no longer keep up with the boys on the sports feild.  The very first day out, that beautiful September morning, I had run probably no more than 200 metres and I was totally winded with a pain in my side.  As I walked gasping for air, the other boys were now way ahead of me.  I came in last, winded, tired out and weak.  I wondered what the hell happened to me.  I had never felt like that before.  so much changed, so much happened, I am still trying to understand it all and comprehend it all.  I lived through it and yet it seems so impossible.  How could anyone let a kid go through what I did and not even take notice that something was not right, and not offer help.  Physically, I looked "picture perfect".  Having lost 10% of my body weight that spring, and I was a skinny kid to begin with,  much of what I lost must have been muscle.  Internally I cry, thinking about why all that.  I never asked to be sick, I never asked for the misery of what I had to go through.  I cried out for help and no one came forward. 
 
There are many times I think "what the hell,  why dont I just end things now, I wasn't wanted back then, why not go now?, but I still cling on to the hope that maybe tomorrow I might get an answer"    In some ways, what I had was worse than cancer.  Cancer you can see,  The after effects of encephalitis you can not see.    I know that if someone who does have cancer may very well contest what I have just said, but enephalitis can also kill just like cancer.  Instead, I what I got was something that very very few people get.  It is more rare than cancer. That being said, the majority of people who do get encephalitis these days, recover with no lasting effects, other than fatigue.  Why it had to be me, I dont know.  I wish it had not.  
As you can see from my thoughts, I am bitter, angry, and a lot to sort through.  On the positive-  at least I now know what I had, and I can now talk about it instead of being told that "nothing happened, you're ok".

15 years ago 0 1153 logo logo logo logo logo logo logo logo logo logo 0
Cammy,
 
It sounds like you have been denied help at many stages of your life and this has effected how yours and your family's lifestyle. Take some time to set out some goals that you would like to accomplish with what you have been given. What would you like for you and your family that is within your means?
 
It also sounds like you could try to challenge your negative thoughts. How would you and your family benefit if you were to disappear? Are there small steps that you can take so you don't have to struggle through your daily life? 
 
Try to challenge these thoughts and set small goals. Keep on focusing on the positive and know that we are always here for support.
 

Brenna, Bilingual Health Educator
15 years ago 0 80 logo logo logo logo logo logo logo logo logo logo 0
Went out this morning to get some car repairs done,  its so frickin cold. Today, feelings no different than other days,  frustration, "lazy",  scared..  Yesterday saw doc about some tremors I had been having, still have them a little bit, but not much. He showed me the mri scans I had done.  They're really neat. It does show that something happened, so many years ago.  I told him about the school material I forgot, like 2 years worth of stuff.  Told him about the severe headache I had just days after starting back at school.  He is sending me for another mri again.  I haven't told him about the time some kid knocked me out at school though, not sure if I need to or not.  so much stuff happened back then and it is in some ways overwhelming to finally see the truth.  Its like "I told you so".  I asked for help back then , instead told that Iwas on my own.  My father still can be a pain in the butt!   At times I "hate" him for what he did to me, yet I still love him, as he is my father.  My parents drove my younger brother and me apart and it is only really this past year or so we are finally seeing "eye to eye".    He got to do so much more than I could.     Ever since having been sick, I have struggled just to get through each day.  Never succeeded at anything.  I have been "running" from problems ever since.  It is only now I see why I have been running from problems. I'm exhausted from running, and my time to change is running out.   I will not be able to provide the post 2nd education for my kids as I had dreamed of,  I have not been able to provide them with a decent standard of living.  All that and much more just because of a stupid damn bug that no one took seriously.  As much as I want to succeed, I fail to see how anything will ever change for the better.  There are times I want to run away from my family because of what I have done to them.  I have failed them, let them down.  Any of my dreams I ever had are never going to come to reality.  Its not possible anymore.  For far too many years I had been "positive" only to have my dreams shattered one after another.  If people had listened to me all those years back, I may have had half a chance of succeeding at something.  At the very least, I could have had the extra help I needed in the school years after the bug, but my father denied me the help.  My parents have admitted they outright refused to help me.  With what I went through, I needed the help so much, and I was denied that right.  I am bitter, I am angry, - yet being bitter and angry now does little to change anything. 
15 years ago 0 456 logo logo logo logo logo logo logo logo logo logo 0
Hi Cammy,
 
I read on another post that your concerns are also with the present.  You have some resent tests that need further investigation.  Also, in the work posts you were mentioning that your depression and illness are giving you more physical symptomes that you must deal with. 
 
Now the guilt from judging yourself lazy we all have to deal with daily... Right Gang!  It is part of the stigma of having an illness, and one that has so little understanding.  Here might be a ray of light for tomorrow ?  Rather than describe being lazy and not getting any work done try it with a slight change in words ... ? It is a small thought challenge. A small exercise in the here and now. 
 
and nothing is a lost cause, only if you want to give up.  do you?
15 years ago 0 80 logo logo logo logo logo logo logo logo logo logo 0
You are correct that not all moments were as "horrific" as perhaps I indicate, but some times were bad.  Humiliation, rejection, outright refusal to help with school work, my father compared me to the school genius.  I was called lazy, etc.  My escape from reality was to get on my bike and ride for 2 or 3 hours.  By the middle of gr9, I lost any friends I had had.  I was having problems at school;  with the shower broken at home for over 6 weeks, I was unable to wash my hair.  My father only allowed about 3 inches of water in the tub, and I was unable to wash my hair with that little water without "barfing", so for that period of time I did not wash my hair, - one can guess what the other boys were thinking, not knowing the problem at home.  It never occured to me to take a towel to school and shower there.  It was beyond me to solve any more problems. 
 
My parents ignored my problems at home, and just said that my problems were for me to sort out.  My brother and sister have said that at times I did get the bad end of the stick.  They got to do "extra" things,  I did not.  I wanted to, but the other problem was my extreme fatigue.  Things were very much against me, and I did not know why.  I did not understand many problems.  It also never occured to me that the "bug" I had might in fact be part of the problem.  
I was also not able to keep up with the boys on the sports field either.  I had phys-ed teachers "nagging" me all the time for being slow or "quitting".  I began to hate phys-ed.  Yes, lots of negatives.  I had no one to talk to either. 
 
I talk about being "spiritual".    The one thing that kept me from suicide was actually something many people would not beleive-,  but this occurance happened when I was 8, long before I had any problems.  I had a "visit" from God.  It was that "visit" that kept me going through those times when all was as horrific as I describe.  The God I know is far reaching, understanding and compassionate than most would beleive.   
 
Today,  I strive to survive.  I look back on those past years of HELL and look for a "key" to unlock some of my problems today.  It is a painful journey.  I understand a lot more about why I struggled today than I did a year ago.  Until I can get some sort of answer for my problems I will never have peace.  I know someplace there is an answer and I hope I can get it.    Some of what I put up with was nothing short of abuse, neglect and in some ways, abandonement.  It is for those reasons I eventually left home, never to be able to return to live there.  I am thousands of kms away, yes I have been back to visit, but that is all.  I can never call it home again. 
I know none of you are trying to "belittle" my troubles, we all have troubles and I in no way try to diminish anyone elses problems.  What works for one does not necessarily work for another.  I live today, but tomorrow is not here yet, sometimes I wonder if it will be.  If my past is any indication of what my future beholds, I want none of it, and it is for many reasons I am trying to change things, but dont know if it will work.
 

15 years ago 0 1288 logo logo logo logo logo logo logo logo logo logo 0
 Cammy,

We think its really great that you are able to put your feelings and past hurts into words.  Sometimes putting your thoughts into words really helps to make sense of things.   It seems you are doing your best to sort through your emotions.  It is obvious you had really difficult times. We really feel for you.  However, some of the words you are using are very strong.  I'm sure what you experienced was horrific; but, using such a strong word like that really colours how you see your past.  Sometimes trying to reframe the way you are looking at your past helps.  It will not fix things or make things "better". But it may help you accept the past which is very important if you want to continue to grow and improve on your outlook.  For instance, when you think of your past instead of thinking in terms of horrific, try thinking it was trying or challenging.  Please don't assume I am trivializing what happened.  You must have been an extremely strong person to get through that challenging time.  Please try to remember your inner strength and know that you have the power to accept. What are a few of the things you did back then to help you cope? How are you helping yourself cope with these memories today?

 I hope tomorrow is a better day for you. Please keep the posts coming we are all here to help, you are not alone and you are not being ignored anymore.   

 Wild Cat,

 Thank you so much for the excellent advice and thought provoking questions. Please keep them coming.

 Sylvie, Bilingual Health Educator
15 years ago 0 80 logo logo logo logo logo logo logo logo logo logo 0
To many it may seem to be a "lost cause", however, as I delve(sp) deeper into that time frame I am finding things that happened, and things that did not.  I saw the images of my mri today and it shows that in fact something did happen.  I know that what is "lost" will remain so.  I am only looking back in history to try and hypothsesize that "missing" information.  I do know that by the time I was in gr9 math, we were presented with material that was an expantion of material taught in gr7 and 8.  Much of that seemed to be new material, work that "I had never seen before".  Why that happened I dont know yet.  I ended up learning 3 years worth of work in 1 year. I now understand why I struggled so much that year in math.  work overload.  Anyone faced with that amount of work to learn in one year would have problems.    So,  If that happened,  what else did I miss that I have not discouvered yet?? 
 
A year ago, I never realized that I "lost" 2 years worth of work.  I never realized that my struggles in gr9 were from that.  I thought it was just hard work, when in fact it was not that difficult.  The depression I felt in gr9 was driven by lack of support from parents and teachers.  No one saw my struggles, they were "blind" to them.  I cried once in math class when I got yet another failing grade on a test.  It took all my strength to not kick the desk over and run out of the class screaming.  If I had done so, I would not be here today.  Yet in all these trying times no one ever came to my help.  It was a year from HELL.  But, there is still something not found from within those 3 years of HELL.  I was negelcted, the emotional abuse, the public humiliation I endured in those years was horrific.  Were those years all bad???-  No, there were a few good moments as well but not many.  I was forced to leave that school part way through gr10.  I had to go and register myself at another school all by myself, bringing the papers home for parents to sign.  I then went back to the private school and turned in my books.  That was one of the hardest decisions I have ever made, yet if I did not I would not be alive today.  No one even questioned me as to why I made the change, and it was only this past summer I told my parents why.  They admitted they should have helped me more instead of watching me struggle. Instead, they helped my younger brother and older sister.  My mother admitted I was the "forgotten" child in the family, but somewhere in those years is a clue to helping me today. 
15 years ago 0 456 logo logo logo logo logo logo logo logo logo logo 0
cammy,
are you okay with my questioning and the line of thought I am bringing you toward?
 
why would the key to today be hidden in those three years?
do you need to find the thing that triggered the encephalitis?  will that cure or repare anything?  will something in that timeframe help you change your entire life? 
 
You have a life and a now to deal with.  There are groups meant to help people who need to learn new ways of dealing with the world. Lets take me as an example ... my psychiatrist is part of an anxiety and bipolar clinique so there are nurses and social workers there to help patients with their illness and daily issues. Another specialist is an ergotherapist for those of us who are more creative and less organized (read no executive functions available when hypomanic).  I have had some help with throwing stuff out ( I also hoard - OCD).  I have been teased by my co-workers because of the great-wall of caro. Boxes and boxes of files piled up in the department ... 
 
Cammy.
I really think that what you lost in those years will remain lost.  That ability might  not come back.  You might need to find help learning new abilities to open new possibilities.  These new posibilies and new challenges are what will help you gain confidence in yourself and a new self-esteem. 
 
 

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