Extended Family

The worst thing to complicate thalassemia, in my opinion is extended family - who rather than understanding and supporting impose additional demands on families dealing with thalassemia    We deal with the appointments, the stress, timing of supplements, etc etc. but somehow it seems harder to deal with immature people who demand what little down time we have left - and on their terms.  Somedays it feels like these people are trying to muffle the little peace and joy that we have left in our lives.  Few of us ask for much - we do it by ourselves - we don't ask for pity or sympathy - all we ask for is understanding     :'(

Thank god for family and friends who actually breath life back into us - I feel very lucky to have them.  Thank god for this site on days like today 

You are totally right Sharmin,sometimes it becomes so hard that you feel that these relation ships are suffocating you,instead of being supportive and helpful,and we can not say much as they are our "relatives" duh!.

I am happy to have friends in my life and this site has given me some precious friends  .

Zaini.

Thanks Zaini,

Somedays, I think this site is what has kept me sane during these hard times.  People cannot understand what it is like to juggle all of these treatments and tests.  It can be so draining.  We are very lucky to have a place where everyone understands.   Just as much as the medical help, we need to emotional help.  Thanks for always understanding 

Sharmin

Somedays, I think this site is what has kept me sane during these hard times.  People cannot understand what it is like to juggle all of these treatments and tests.  It can be so draining.  We are very lucky to have a place where everyone understands.   Just as much as the medical help, we need to emotional help.

My thoughts exactly.

Zaini.

  Yeah to that!  also. 

Sharmin,

Actually its very easy to criticize and to yell at some one,its easy to tell some one that you don't do that and you don't do this,but its very hard to even imagine what the other person is going through. I guess we are lucky we have this site to vent and rant .

Zaini.

You are so right Zaini.  What we go through is very unique, I think that only one of us can understand what it is like.   Thanks again for always understanding 

Sharmin

sharmin & zaini,
u r ryt,sum family members make ur already difficult lyf a hell hole for u.but lets not forget dose who pray
for u day and nyt,try to help u and do wat dey can.remember some ppl do not express deir feelings.but dey feel for u,shed tears while praying for u silently..i hav proof of tht..my dad dusnt show much emotions,hes always in control but ive seen him shed tears while praying for lil z.and its my dad who helps zaini get supplements from oda countries as he has business ppl in many countries.my mom is always praying 4 her in her midnyt prayers..but dey never express deir feelings.i noe it dusnt seem fair but its deir nature and u cnt change it coz dey r old..so u ppl hav sum true frnz who r jst not gud at expressing.all in want to say is tht wen unsinciere family members n frnz try to giv u a hard tym,tink of dose who truly care for u..v sure cnt understand wat u ppl are going thru..but v try to help u by praying for u..and i believe prayers play a v powerful role in ur lives..i hope u get my point.
my prayers and wishes 4 u all.
Pareeshay.

Yup exactly,

my dad dusnt show much emotions,hes always in control but ive seen him shed tears while praying for lil z.and its my dad who helps zaini get supplements from oda countries as he has business ppl in many countries.my mom is always praying 4 her in her midnyt prayers..but dey never express deir feelings.i

Exactly i have posted it before here some where,if it was not for my dad,i wouldn't be able to give Lil Z supplements like carao or wheat grass,he keeps asking me if i want anything for Lil Z,this time he ordered 12 bottles of carao straight away,a full year's stock.

Zaini.

All i can say in this topic is:

"Families are like fudge - mostly sweet with a few nuts."

So enjoy the sweet part and ignore the nuts.

wow!
see family does helps!
luk at the positive side!a picture always has two sides
Pareeshay.

Dear Pareeshay,

Thank you for your message  Yes, family members like you and your parents do make things so much easier.  My mom& dad, my brother's and their wives are amazing.  My poor parents are always praying for lil A - and in their own little way doing what they can.  My brother's and their wives would give anything to make life easier for us, and your post helped me remember that and I am very grateful.  Zaini is very lucky to have you Pareeshay   

"Families are like fudge - mostly sweet with a few nuts."

Tariq, you are very right - my family is mostly sweet - we just have a few giant walnuts around

Sharmin

Tariq,what a resemblance


That is why we need to see lectures given in international conference talking about the psychological aspects for care gvers or the parents. Usually they suffer continous stress, anxiety and depression that in one way or another will affect the patient at some point

manal

Tariq you know from where my nuts belong to  .

Manal,

You are totally right,some times even the daily routine of keeping track of every thing,every medicine,every supplement,leads you to depression,you can't even go out with out carrying them with you.And you are supposed to remember everything,and then you have family and you have to be social other wise people will start calling you anti social  i was a very social person once,very frank and extrovert,but after Lil Z got diagnosed it started to cocoon myself in a shell,i don't know,what went wrong i really can't put my finger on it,but even i can sense it with out people telling me that i have changed,i avoid people,i avoid relatives,unless i am really forced to .
Well,i hope i'll try to change myself.

Zaini.

This is a really important discussion friends.  If extended family members were to learn what we go through it would make such a difference.  In most of our cases, we can try to talk to people and hope for more understanding - and if we are lucky those people that make things so difficult for us can actually become a source of support and positivity.  In some cases however, together we should find strategies to deal with unfavorable situations and people. 

I understand why you feel the way that you do.  Living with this disease, little else feels as important as all of this - and we are hit with such a big reality of life that everything else seems trivial in comparison.  We shouldn't have to do things just because we feel the pressure - but we should find joy in things that we really want to do.   If people were more understanding it would be easier for you to come out of your shell when you ready, on your own terms. 

You are an integral part of the life of this site - your sense of humor, your welcoming personality is amazing  

Sharmin