reaching out for help

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Offline red

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reaching out for help
« on: January 08, 2008, 05:54:40 AM »
hi guys...
i'm sorry to be so down all the time..
but today i totally broke down about a thal related issue.....
its kinda wierd of me to share my emotions with probably over 100 people right now..
but..i mean..who else is better to share it with right..
anyway...
i'm usually pretty tough with this whole thing..but the more i think about it..i think i'm just bottling it all in cuz i'm so cruuuuuuuucccccially scared..of living with thal i mean.
i know its made me, me..but..
today i just started freaking out..
cuz i'm gonna be 25 soon..(and no offense to patrons older than me with thal..)but i started thinking.."omigosh..i'm growing up with this"
and it really scared me..
ever since i was little..i've always wanted to grow up hahahha
and most of my life i took on an 'adult role' i guess i could say in some ways..
but..two facts shook me up..
1.) my physical appearance is changing..and its changing with the thal really shook me up...
the older i get..the more i think 'this is something bad in me'..and i dont feel good..
2.) the thought of 'growing old with thal' really bothered me..NOT BECAUSE I HAVE MAJOR THALASSEMIA! but because i dont know how to handle my emotions with having major thalassemia..and to think i'm going to be an old women who is scared of her disease really frightened my present outlook...

please dont anyone tell me to go to a counsler or pyschiatrist or therapist ..
cuz i've been to 'em all...and it doesnt work for me..i guess i'm stubborn...
but...
i just wanted everyones opinion on what i can do..
i am a prisoner of my own mind..and its REALLY scary in there!
help!

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Offline §ãJ¡Ð ساجد

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Re: reaching out for help
« Reply #1 on: January 08, 2008, 07:35:31 AM »
Hi red,

You have already started to manage this in the right direction; which is to talk about it with others.

So, all you need to do is to learn from the ones who have already gone through this and then apply it to yourself.

Well, for me this thing is a little different. I'm growing old yet I don't look old and this bothers me as I DO WANT to look old. My situation is quite opposite of yours. I'm just waiting to look old and start wrecking havoc to the people around me :evilplan

Since you are now old enough to do things your own way, then there is no need to hold yourself back. Go ahead, take em down :bat
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline Zaini

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Re: reaching out for help
« Reply #2 on: January 09, 2008, 06:18:00 AM »
Hi Red,

I know whatever i say, my words can't be much to help you, but you'll have to find strength within your self,You can be the only one to help your self,after GOD ALMIGHTY.

ZAINI.
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Offline Andy Battaglia

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Re: reaching out for help
« Reply #3 on: January 09, 2008, 06:45:00 AM »
Hi Red,

A cool thing about a group like this is that when you open up and post your feelings, you will find a bunch of people who understand how you feel. Therapy can be helpful for some things but sometimes you just need to talk to others who really understand what you're dealing with. There's no magic therapy that will make any of it go away and the best that can be hoped is that therapy might give you better tools for dealing with things, but regardless, you still have to deal. I sometimes am troubled by some of the traditional thinking with therapy. Lisa was put on anti-depressants because she had anxiety. Well, why wouldn't she have had anxiety? Hepatitis had destroyed her liver and she needed a transplant. My thinking is there would have to be something wrong if a person didn't have some anxiety in those circumstances. Having anxiety and being obsessed with anxiety are two different things but the way anti-depressants are so quickly doled out, I don't think the difference is noted. Sometimes you just have to accept that a person's life situation may create anxiety and that it's normal and mostly, people learn to deal with it. Red, like most thals you have to deal with anxiety, and you have your up days and your down days. Sometimes things will seem overwhelming (and that feeling is in no way limited to thals) and other times you will wonder why you felt that way. One thing that helps me when I feel depressed is knowing it won't last. It gives me some anchor to know that good days will also come, like the past couple unbelievable warm January days. I loved it! In the middle of winter, suddenly it was like late spring and the air felt great and even though I know winter misery will soon return, I had a couple great days. Make the most of your good days. It will help carry you through the bad ones. I would also suggest you try to get to know some of the older members like Miaki and Smurfette when they're around and learn how they've dealt with these same issues. One thing I've learned about thals is they are a lot tougher than they think they are. They have to be to stay alive. It is a constant thing to be a thal, but it doesn't define who you are. You define yourself and in your case, you've defined a pretty cool, creative thinker. Let your stubbornness work for you to keep you strong. Be determined. Be aware that even when you feel the worst , your stubbornness and determination won't ever let you give up.


Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: reaching out for help
« Reply #4 on: January 09, 2008, 03:25:38 PM »
,............ but it doesn't define who you are. You define yourself and in your case, you've defined a pretty cool, creative thinker. Let your stubbornness work for you to keep you strong. Be determined. Be aware that even when you feel the worst , your stubbornness and determination won't ever let you give up.

:happyyes :happyyes :happyyes :happyyes

You have said it all Andy i totally agree with you

Manal

Re: reaching out for help
« Reply #5 on: January 09, 2008, 03:35:22 PM »
Hi Red,
I understand what it is to be scared as I am going to be 19 soon as well. I have also noted that not much people can actually understand what we feel since its only us who can truly understand. Sometimes I ask myself- why me? Why couldn't I also be normal like everyone else?

Its really tough I can tell you that now, especially since I also read an email from Ambareen of the UAE. But I am trying to take one day at a time, to celebrate even the samllest achievement each day- things that everyone else takes for granted- I dont- and believe me it makes a difference.

We are also fortunate as there are new things available to us which the older thals were not privy to as well. I guess that i am lucky to have additional support as well which helps.

So please keep your chin up as you too also provide inspiration to other patients who are less fortunate.

I know that the happy days are around the corner for us.

God Bless
Roanna

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Offline red

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Re: reaching out for help
« Reply #6 on: January 14, 2008, 11:29:33 PM »
sorry for the late reply everyone...
i havent had a computer accesable..
but thank you again!
much love,

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Offline Waleed

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Re: reaching out for help
« Reply #7 on: January 28, 2008, 12:57:01 AM »
c'mon Red . Be a man . and i exactly want like that. See i'm thal major too turning out to be 22 just few days ahead. Look, your worst enemy is anxiety that hurts nearly every thal and crush him/her. Fight it like a Gladiator or think of Brigadier.Red  ;) .... every person in this world is tested . Some are tested with brains, sum with brawns, some with wealth and others with poverty ...and V ARE WITH THAL MAJ while others with health .... so u r to pass ur test. Stand like a tall soldier with a sword in his hand. u growing old so everybody does ! no problem in that ...but make sure ur not old from ur INSIDE and that wut it really matters !

Ever thought of why-U just hav Thal maj and not blood cancer...or why-U have 2 legs 2 arms and 2 eyes????  No...but we always think Why-me a Thal major ... Why-Anyone deaf/blind ??? Its just test .... if ur having a disease than u maybe blessed in other ways u might b ignoring . and believe me Red , Though ur Thal mAJ but ALLah has given u such an handsome personality that makes u look different from others......

Be Brave BRAVE HEART    ...... I'm YOUR FOLLOWER 
Waleed

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Offline Zaini

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Re: reaching out for help
« Reply #8 on: January 29, 2008, 06:00:36 AM »
That's the spirit Waleed  :thumbsup :clap :yes

ZAINI.
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Offline Smurfette

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Re: reaching out for help
« Reply #9 on: January 29, 2008, 06:37:41 AM »
 :yay three cheers for Waleed :)

I have sometimes wondered myself "Why Me" but I have always thought I am lucky to be alive and able to talk, walk, see and do much of the things that I can do...

I am going to be 39 soon and am very happy to be at this stage of my life to say that YES, I have defied what some doctors said that I wouldnt live past my 6mths of birth...

As Waleed said we are very different from the world...We have our own personality and we do have a different life we have to live from the others as well...

So please dont feel sorry for yourself and say "Why Me"

WE are all very UNIQUE!! AND DONT LET ANYONE ELSE TELL YOU OTHERWISE...


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Offline Miaki

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Re: reaching out for help
« Reply #10 on: February 29, 2008, 12:43:30 PM »
Hello to all  and a bigger hello to Red,

Sorry for my late response but I guess better late than never.

I'm a 39 yr old thal major female. My parents were told (like many others) that I would not live past my teens.  :huh they got that wrong.

I was told that i would not have children..... :rotfl   :huh they got that wrong also

The first thing we have to learn is to not class thalassaemia as a disease because its NOT. We have to learn to call it a disorder as it is. Thalassaemia is basically a spelling mistake in our DNA.

We are all blessed, we are able to walk, talk, see, touch, smell, we can admire the colors of the summer sky, we can feel the rain in the winter months, we can smell the flowers in spring and watch the leaves fall in Autumn. We basically groom ourselves on the outside such as brush our teeth, brush our hair, sit in the sun to have a bronze glow, rug up in winter to not catch a cold. We do our chelation therapy to maintain our inner health.

You might be saying yeah well it's hard, trust me I know things are hard for many patients on this forum that live in countries that don't have the proper care, that don't get desferal, that have to travel many of miles to get to their transfusion centres and perhaps don't even get fresh blood, I have been overseas and seen it first hand and told many many stoires. I have also had the heartbreak of loosing many friends in my home country and also overseas.

HOWEVER, we have to make the most of what we have and NOW! Things have changed over the years as I have grown older with thal, things are changing for the better. We all have to remember that and not loose sight.

Growing old should be a welcoming thing for many of us, as we can turn and say I'm proud to be 22, 45, 50 and even 65 why? Because you have joined the wider community, you are normal, you contribute to your community, just with a slight CONDITION called Thalassaemia. I am as I said 39 yrs old. I'm blessed to have made it, I count my blessing and i am looking forward to turning 50. I want to be one of the older thalassaemic patients I want to experience the ageing conditions that the rest of my community live with, I want to see my child become a parent (if he is blessed) I want to see granchildren. I want to grow old with thalassaemia.

At the age of 16 I said the words "why me?" my mother said "there is nothing wrong with you" its harsh i know but (long story behind it, I have posted it on the forum in previous posts) she didn't cotton wool me, i had to work after school, i had to catch public transport and do and fend for myself. Why? Because I was normal like my cousins and friends. Why should I be treated any differently?

I have been dealt with alot in life , alot of life experiences like others on this forum, i know i am not alone. I became a widow at 38, my child was unwell at birth (now is very healthy) my husband was ill for many years, yet not once did i even say why, why is all this happening to me? I have thal and I have to deal with all this shit (excuse my expression) but thats how it is.

Life is what we make of it , the world is our oyster, you have to take things at every chance u are given and never loose sight of who or what you are. I do agree that having thal major has made me a stronger person , being able to accept things for how they are not what they are. Being stuborn is great, its charector building. I personally wouldnt change a thing.

I love my thalasaemic life, I love life!

Miaki xx

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Offline Manal

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Re: reaching out for help
« Reply #11 on: February 29, 2008, 02:19:25 PM »
Thanks Miaki, you have re-charged my soul. We all needed that :bighug :clap

Manal

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Offline priya

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Re: reaching out for help
« Reply #12 on: February 29, 2008, 06:43:26 PM »
Hi Miaki

After reading you post, I really don't have words to express my feelings for you. Hats off to you. You are simply great women. :flowers :flowers

With lots of Love and  :bighug

Dimple

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Offline ThalGal

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Re: reaching out for help
« Reply #13 on: February 29, 2008, 09:03:34 PM »
Miaki, :cheer
You Rock!!! :bighug

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Offline Zaini

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Re: reaching out for help
« Reply #14 on: March 01, 2008, 08:01:30 PM »
Quote
At the age of 16 I said the words "why me?" my mother said "there is nothing wrong with you" its harsh i know but (long story behind it, I have posted it on the forum in previous posts) she didn't cotton wool me, i had to work after school, i had to catch public transport and do and fend for myself. Why? Because I was normal like my cousins and friends. Why should I be treated any differently?

 :yeahthat :exactly

ZAINI.

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