Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: red on November 18, 2007, 11:44:42 PM
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Hi All..you've all been so patient and kind in hearing me out, i thank you, especially with this topic:
recently, more than ever, i've been losing hope in my life.
i havnt really had a stable job, i dont really have good relations with my family, and most of all, i've been so scared about the future and my life with thalassemia.
i know this is horrible, but i keep thinking about my life with this and how it is so darn effected, even when i dont want it to be, or even when i hold it back so much from ruining anything.
i've taken action many many times, by altering my viewpoint on life, developing new modes of coping and being in my life, i've even tried different forms of entertainment, or job change, and spoken out about my frustrations to my family and even therapists and psychologists (numerous times)...
i'm 24 and for more than a decade, it just seems like nothing is working, because it all just seems like a temporary fix to the problem, and eventually the problem arises again.
i am so scared. because i keep thinking. "oh my god..what if this is ME..what if i am just internally always going to be depressed about this"....and i get so scared about that i go into 'survival mode'....and my survival mode to me is just thinking and thinking and thinking about a way to change myself or the problems i have.
but i know this is hindering my life, and exauhsting me into something i cant do anymore.
i am so scared..it seems i dont have hope anymore for my life and my abilities. because i've done so much for myself in the past and it has all came down to a form of sadness again. with thal at the forefront.
i dont know what to do.
doctors and therapists said maybe its a mental disorder and i should take pills (meds)..
but you guys..i dont do any drugs because of that simple fact....
mind alteration scares the bejisus out of me!
so i'm frightened to take pills.
someone suggested charity work to me,.. and to some extent i've done that too...it just seems to me that i cant fully be true to helping anyone if i myself am not helped at all..i'm just this mess trying to help everyone else...
even posting things on this site makes me feel unworthy sometimes because i know that i'm a wreck and to give advice is immoral in a way. .......
i dont know what to do..and i love life...so its sooo hard...
i need to find a way to make thalassemia better for myself, its effecting everything , and never in my life did i think it would get to this point.
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Dear Red,
I know what you are going through i have had also many ups & downs in my life as we all have had with thal major,i also am a "thinker" and think how sometimes thal has ruined my life in some ways or makes it more difficult.But honestly life is precious and its taken me along time to see this,a big wake up call for me was last year in 2006 my older brother passed away from thal( that was a result of him not taking his medictaion probably over a number of years) and when you see someone you truly love it hits you in a big way and when you see someone in a casket its a very unatural thing to see you realise why you are living and breathing it is precious,because others out there didnt have a choice to live ,but you do,you can do it & turn your life around,im sure your an amazing person red and sometimes even a holiday overseas you can go back home after and have a different outlook on life and feel refreshed.Im sorry if it sounds harsh what i wrote but dont give up you and us all we all have support from all our fellow thals and are here for you! :hugfriend
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thank you so much sydneygirl :hugfriend
what you said was not harsh at all.
i actually tought that was so beautiful of you to open up to me.
i'm sorry about your brother.
i've had situations similar too.
even though they are tough, i feel a good feeling too. :wub
i liked your advice about the overseas vacation, cuz i found that that helps alot.
i actually wanna visit australia, one of my good friends used to live there. i've never been.
thanks again.
your friend red.
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Hi Red,
I know that life with Thal. is no walk in the park. We all have to face a situation where we feel like saying that things could have been better if I hadn't had Thal. Believe me, I say this all the time :biggrin but then, there is nothing else that we can do about it except FIGHT! FIGHT! FIGHT! FIGHT! :catfight You know that you will have to beat it or else it will beat YOU!
If something takes you down; hit it back...HARDER. :bat Convince yourself that you are on the right and this will not get in your way.
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Dear sweet red,
Believe me reading your post has left me wordless,i can't say that i have suffered that much due to thal, coz i am a minor,but to tell you the truth,that depression phase, i go through this so often,may be my reasons are different then yours but i can understand how you feel when you are depressed,so please don't loose hope,i know it's easy said then done,but you are only 24 years old, you still have your chances in life,we'll all pray for something good to come along.
Sajid,My Brother,
That's the spirit we all should be showing,please take good care of your self and your ferritin :wink
LOVE ALWAYS,
ZAINI.
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Hi Red,
Am Akka, 26 yrs from Maldives. I also went tru a period like wat ur goin tru now. I have gone tru lots in my life. Whn i was small i got even brain fever and never thought i wil live like how am today. God is great. Today one of my biggest has come true. Am goin to marry next month. I think am very lucky to get an understanding and caring fiance. :smiley
I am working for the national shipping line of maldives. Its been 7 yrs now i've been working.
Got promotions too. I also went to several psychologists and councellors too. It didnt help me out. Then my aunt invited me to Malaysia and i went there for a break. There she took me for few coucelling sessions. When i returned i was totally a new person. More confident in life. U should always think the opportunities u've got in life. Do not compare ur self with others. Think of how ur goin to handle it how hard life turns on u. U been a thal is lucky to have a job. There are many who are not given jobs cos they are thals.
We are always there for u. Am lucky u joined this website where i felt totally lost b4 i joined. I've made many friends and got loads of valuable info from this site. Thanks to Lisa sadly she's not with us today and ofcourse Andy whose been a v good friend from the time i met him.
Kit, Tc
Akka
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thanks again everyone! :heartpink
sajid, your so funny with your emoticons! hah! a good laugh always lifts me up.
all of you are very insightful and willing to express emotion, thank you.
i guess kinda my problem is i'm a girl, and i'm not very "girly"..
i dont really like to look pretty or anything, and be giddy.
i'm more tough, and always the one to really take care of everyone else.
i dont like being taken care of..so the idea of a guy being in my life with my thal is
kinda frustrating to me.
the poor guy, i know, i'm not even giving him a chance..but..i'm just that way.
i dont like exposing my emotions to a guy..its kinda pointless to me i've learned.
also..i know what i've said is wrong..everyone should have a balance,
or something.
but..i've tried and its just been hard to me to show a 'girly' side, or a
vulnerable side..i end up feeling frightened and 'attacked'...
and all the while i'm constantly thinking about my thal.
when i'm more like tough and introverted, i feel more protected with my thal
especially and more strong to stand up to anyone about it.
i guess it has become more of a problem than anything, because me constantly trying to shelter myself has made thalassemia the most important aspect of my life, down to the way i even look, so i guess i'm the one that is making it the biggest deal of all.
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Hi Red,
I will give you a few notes and i hope to work through it :
- stable job & relation with your family is not a problem at all since you believe that there are a problem ???, so you can push your self to communicate with others.
- "scared about the future, and your life with thalassemia",
:hmm well..
..even a normal people worried about the future but you should keep the future for tomorrow and live in the present.
- Since i am a thal. major, i am 100 % agree with you to think about your life and the next step, be cause when i am in your age (24 year old). I was prepared to get a married. and I have i beutiful gilr now (11 Years Old), :flirty
- 99.8% & (00.2 % for No Comment) agree with Sajid to keep every thing behind you..and think how to be Happy and make your life more easier than now (life is not chemistry experiments).
- 99.9 % agree that should doctors and therapists who think that you have a mental disorder and thay (Not you) should take pills (meds) :nurse..because most of adult and normal people in your age face a similar problems, Just try to change your daily life system, and try to be more closer with your family, Get a new friends :grouphug, then think about married :veil.
if you dont know what to do after all that, try to delete this word from your mind "Scared" and be more closer with God.
Good Luck Man.
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Hi Red,
Hope is an aspiration that you can't afford not to have,you need hope to make you strong and to keep climbing.
When a person hit rock bottom the only way is to go is up,
Don't be discourage the power greater than ours has a plan for you,you are here because you have a purpose,hang around and learn.
Self esteem is another good atribute to have,loving oneself is to take care of self the best way one knows how,despite of the pain and suffering one has to have faith in oneself.
You are loved and you need to love yourself more."having said that" I know the pain, ive felt it before,it was my self esteem,determination, faith.caring friends loving family that helped me to get out of it.dont give up Keep trying' make plan' have a goal, think of where you will be in years to come,and live a little, :bighug
Kathy
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Medications has helped me too,Sometimes we need to take it so that we can have a better , quality of life ,It is there because some of us needs it.
Kathy
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Hi Red
Whenever I am down I remind myself of this quote. Many of Life`s failures are people who did not realize how close they were to success when they gave up. This beautiful quote always gives me the strength, the determination and above all HOPE to keep going. Hope this helps you too. A life with love will have some thorns, but a life without love will have no roses.
Take care
MAHA
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Hi Red,
a trip to australia will do you good lol you would love it!
where in Australia does your friend live? im in sydney
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Hey Akka
CONGRAGULATIONS
May God Almighty bless you with all his blessings.
ZAINI.
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DUDE! you all are auwsome!
just to know that all of you exist is making me happy!
NOT KIDDING!
maha...i really dug your quote about the thorns and love..deep vibes!
and sydneygirl..my friend doesnt live in australia anymore..but that aint holdin me back! ;)
BUT TRUELY...i want you all to know..
it was because of you all that i have gotten hope again!
PLEASE ALL OF YOU KNOW THIS!
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Depressed about life and thal?
Join the club hehe :biggrin
We have all been there, and we will sometimes be there again. Cant promise you it will vanish, damn problems always keep coming back after I've removed them hehe. Just dont go around with a death-wish and stop taking your treatment like I did/do, cuz no one benifits from your death, not even yourself!
Havent found Mr. Right yet? What about Mr. Left? :biggrin Dont worry, he is still looking for u 2!!
Hope that was a smile on your face... If not, I might have to try harder! :hugfriend
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Hi All..you've all been so patient and kind in hearing me out, i thank you, especially with this topic:
recently, more than ever, i've been losing hope in my life.
i havnt really had a stable job, i dont really have good relations with my family, and most of all, i've been so scared about the future and my life with thalassemia.
i know this is horrible, but i keep thinking about my life with this and how it is so darn effected, even when i dont want it to be, or even when i hold it back so much from ruining anything.
i've taken action many many times, by altering my viewpoint on life, developing new modes of coping and being in my life, i've even tried different forms of entertainment, or job change, and spoken out about my frustrations to my family and even therapists and psychologists (numerous times)...
i'm 24 and for more than a decade, it just seems like nothing is working, because it all just seems like a temporary fix to the problem, and eventually the problem arises again.
i am so scared. because i keep thinking. "oh my god..what if this is ME..what if i am just internally always going to be depressed about this"....and i get so scared about that i go into 'survival mode'....and my survival mode to me is just thinking and thinking and thinking about a way to change myself or the problems i have.
but i know this is hindering my life, and exauhsting me into something i cant do anymore.
i am so scared..it seems i dont have hope anymore for my life and my abilities. because i've done so much for myself in the past and it has all came down to a form of sadness again. with thal at the forefront.
i dont know what to do.
doctors and therapists said maybe its a mental disorder and i should take pills (meds)..
but you guys..i dont do any drugs because of that simple fact....
mind alteration scares the bejisus out of me!
so i'm frightened to take pills.
someone suggested charity work to me,.. and to some extent i've done that too...it just seems to me that i cant fully be true to helping anyone if i myself am not helped at all..i'm just this mess trying to help everyone else...
even posting things on this site makes me feel unworthy sometimes because i know that i'm a wreck and to give advice is immoral in a way. .......
i dont know what to do..and i love life...so its sooo hard...
i need to find a way to make thalassemia better for myself, its effecting everything , and never in my life did i think it would get to this point.
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hey their im new to this web sit, i have thalasimia major im also 24 from london ! i jus read ur post and i can realate to wot ur goin through its not a nice thing !!! i stoped doin my treatment coz i was so deprest and now im diebetic becouse my body is iron overloaded !!! im so depresed also im scared of the out come !!! who wants to die ??? thats my worst fear at the mo i could have a heart attack at any time and im only 24 ??? id like it if u got bak to me as where da sme age i can relate to you ??
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Hi mel :
hope that u will b fine n healthy .......... be brave man.... dont give give up ....... u know i was in comma like sitution a few yrs ago i was on bed i didnt walk i even didn't take the glass of water to my mouth my eye and senses were failed bcoze of high levels of iron and Sugar levels i wasn't able to understand the discussion............ but now i m back to the life again i do play cricket i do everyting i want to.......... so plz bro dont give up and keep fighting to the illnes n will b the winner ....... winner of the life's game ......... dont lose ur courage and patience and u will b fine soon ................................... take care n keep us informing abt ur health
UMAIR
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hi mel :
its a little abt me :
Iron level : 13509 ng
i m a hepatitas B patient
i have ulcer in my stomach
spleen removed ( ithat was a big operation 32 stiches )
and i m a diabetic Umair
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sorry for the negativity guys. i am not normally like that.
i know we all have our problems.
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Hello Mel and Welcome.
I think that you made the right choice to post on this forum here you will find support and make friends that will strenghten you and maybe gives you new perspective on your life.
Don't ever apologize for how you feel, you have the right to feel bad if is not good for you.
I must say it saddened me when I read this kind of post. Losing hope in ones life is very hard because ones feels that there is no place else to go and no nobody to turn too.It can have dire consequence. I hope you dont give up while youve got life there is always hope.
We all feel down at times and we tend to forget about the good things that we have ,we tend to consentrate on our pain only and meanwhile the people around us suffer with us because the also feel helpless.
I think ,that you are feeling down because is not easy having a chronic illness and all the stuff e;g med, ect:
Its okay to take Medication to assist you to get back on your feet, what have you got to lose you are already feeling so low.
I suggest you do take the medication for a short while ,to assist you getting back on your feet, most of us has too if needed.
Please Mel take your strength from all the brave young people you have on this website they are very brave despite of there struggles you are not alone, we are all here for moral support ,
I'm close to 54yrs old and I have been in pain for a long time I know how it feels like, but I don't want to give up I try hard for me and the people around me.
You are valuable and worthy, chin up, tomorrow its another day.
"One day at a time" :flowers :flowers :flowers :flowers :flowers :flowers
Please read all the post it will help you.
My name is Kathy I'm a friend and I'm here for you
with much love
Kathy
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:clapcheerboy :yaaaaaay :clapcheerboy
Well said! Kathy.
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Hi Mel,..
yeah totally..i'de love to talk to you and be able to share stuff we relate to..
:)
FOR SURE.......
well..let me say this first...its so funny that i saw this post back up here cuz i was like...."hhheeehh? i had wrote that so long ago!"
but infact..it feels like its been so long cuz i am totally away from that mentality now!
i feel like someone else right now..someone who can take care of that girl who had first written that post and tell her.."hey, listen..things will get better for you if you realize you are capable of taking the matters into your own hands"
that girl who wrote the post didnt realize that at the time..she felt like alllll these mattresses were upon her, and there was no way out except for them to be pushed off by other people.
well the more she waited for the mattresses to get pushed off, the more she was just lying there under them..helpless..untill she felt like she couldnt breathe..untill she felt the complete utter darnkess that she was under..untill she felt this massive clautrophobia...
(SORRRY FOR ALL THE WIERD VISUAL REFRENCES HAHAHA)
but one day ..as she was lying under the mattresses..she said to herself.."you know what..its been a few months now (it had actually been 3 years)...and uuummm..yeah...noone is taking these mattresses off me...and i'm getting pretty tired of myself being so whiny and useless, so i think i'm gonna try taking these mattresses off myself!"
and thats when i slowly started to change!!
each "mattress" was a task that i hadnt accomplished that i knew i needed too in order to be able to look in the mirror and say.."there you go..now there is a tough strong character who is freakin AWSOME!!"
hahahah
not to sound egotistical..but i kinda am now..and you know what..its a good feeling.
ahhaha :wink
so yeah..basically what i'm tryin to say is..i accomplished what i wanted to accomplish and what i KNEW i needed to accomplish one step at a time..at my own time (BUT NO LOLLYGAGGING WAS IN ORDER!) hahahahah
and slowly but surely...i got myself to a point where i knew i COULD be and where i WANTED to be..being able to take care of my own stuff and my own self!
At our age Mel..i think we have been through our fair share of s@*% (excuse my language)..and so for that fact..we can say that we know a bit about ourselves right..
i always say..you have to go through s@*& to get through s&*%!
People like us can face anything we want..anyone can, ..you just have to want it bad enough, and be able to say to yourself WITH YOUR HEART (not to sound cheesy but its true)...that..life is an adventure..its so much more fun to go through your adventures and see what they are all about!! then to lye there under all those freakin mattresses! :dunno
i hope that helped a bit!
but if not..just let me know what i missed and i'll talk to you about ..
but just know..that i'm totally rooting for you , even tho i have no clue who you are.
but just the fact that i know you have soldiered up this far..
i know you are tough enough to face you own challenges!
DONT EVER FORGET THAT!
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:clapcheergirl :clapcheergirl :clapcheergirl
ZAINI.
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Hi Everyone,
being a thal major myself, i know what it feels like and we all have good days and bad days. Its important to share this with everyone. Today is one of my good days so i am here for everyone!!!!
chin up folks, you will be there for me on my bad days.
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Sure we will be :yes but i wish you all the good days :bighug
ZAINI.
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:yahoo :console
Thanks Zaini, You know I have never met you guys face to face but feel that you're family...but then we all are one big family.
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Hi everyone
Im a Thal major too and ive been done that path many times too
especialy when close friends (thal) pass away i get realy sad
sometimes i feel real tired and i dont mean body i mean emotionaly tired , i just get fed up having to fight to live
test more tests.... transfusion....splenectomy...... desferal...now exjade and so on and so on.... i just get real sad sometimes
and i feel that i cant talk to my mom although she realy suportive just that i know that i would hurt her feelings.... because to be honest the only reason im still fighting is for my fam.... i dont want them to hurt if anything had to happen to me
u see im not scared of death because i feel that it will be a releif for me...so much pain in my 32 yrs of life..... sometimes i feel sad and other times i feel strong like a hero..i dont know why i feel down and i hate it when i do :/
anyone feel like that or is it only me?
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Your feelings are very common among thals, Nina and it's a big reason why this group continues. I hope others can offer some encouragment for you, as they experience the same emotions. Lisa did too at times.
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Dear Nina,
I can understand your feelings, and survival is more of a struggle for you than it is for other people - and somedays must be very difficult. However, I hope that you remember survival in many ways is a struggle for all of us - yet your time on this earth - apart from your identity as a member of your family - is very important and your well being is needed just for you being who you are.
People suffer many ailments, whether it be diabetes, asthma, epilepsy etc etc. yet there is a need for us all here - and our lives are worth the struggle.
Sending you my best,
Sharmin
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Hi Nina,
Don't get depressed, live life like never before.
Don't run or think behind thousand reasons to make you sad, but run and spend time behind one reason that you could make you happy and cheer you up.
The views you mentioned are common. Myself, being a Thal major since past 18 years of my life, I never experienced that oh god, I now no longer need to live, instead I could beg him for even more days to live because I find life around me to be beautiful.
Life is not what you think, it's how you live and that makes difference. Myself, as a child was or even a grown up wasn't ever differentiated in schools, sports activity or even other creative activities or roles and that's how I could live a life and living like a normal person.
I was diagnosed with diabetes in January 2009 too, it was an initial shock for myself, but I just laughed at it and made it a part of my life, routine. I now eat all the healthy meals that I was not eating before, and even more, and I find thal major or diabetes hasn't affected my life is any greater way.
Along with all these, I keep my family happy with laughter's and all that. We never feel that I'm a thallassemia major until the transfusion day comes, when I realize, "Oh, today is my BT day, no problem, 4 hours dedicated to you.".
Of course, I also experience fatigue sometimes (more these days) or restlessness, but I eventually overcome it.
Just do what you find happiness in and you'll see how great life is. I also take a walk in garden that is in front of my house, go in to the balcony and see the view from there and turns out how beautiful life is and what I'm missing.
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Hi Nina,
Whatever is going on in your life is common for all thal and i know many having same feelings.
Ultimately it is upon us to come out from all the challenges.
And i am sure you have the capacity to handle all the stuff.
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First of all i would like to thank you all for ur replies feels real nice to have people who actualy understnd me to talk with....
when i was living in south africa ( born there ) i never ever felt that thal was a problem people would treat me just like a normal person but then again i guess i was real young ( lived there till the age of 12) but here in greece its like everyone puts a label on you ..the goverment gives us evry second month of the year an income but that because they have asked us to go past this test that they give us the % of disablity and mine is 80 % you see with that i cant get a job here in greece its very hard i have a diploma for a kindergarten teacher ( i realy love children) but not allowing me to work :/ thats why im thinking of getting out of greece (crisis) thats going through alot now and going to a country simialar to the one i was born at (australia ) i know how to speak well english and thats a + i think but before making any big steps i need all the information i need , how do other countries deal with people that have a blood disorder like us thalassemia patients?? do they label you? like they do here??? people are very racist here in greece not with color ... i mean when i met my MR perfect in the past his parents forbid him to go on with me cause they where afraid that he will go through so much pain staying by my side you see not everyone knows exactly what thalassemia is and everyone has their own image about it....so that broke my heart.... luckily now i have found my true love , he adores me but dont realy understand me 100% at times but then again i dont mind...its a journey that we will have to get through together....and walking through i guess he will get there with the years... :) (his mother and relatives do not know anything about my health situation and that was his decission and i respected that) oooh i can go on and on but i dont want to bore you all with my stuff .... i just want to say thank you so much for this forum and god bless you all ..thank you for bieng friends :)