Extended Family

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 .... 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.

Absolutely Right Zaini , Same here , i never been social but to date i dont like to attend parties , but sometimes it come's like complussion to atend party and i always ask my parents " meray jaye baghair guzara ho sakta hai " ( it could be fine if i stay at home ) .. coze its difficult to decide when to take insulin ( before going to part place or at party place ) so i dont like parties .. and my relatives who never teased me and care of me more than i do , always ask in parties " where is umair ?" even the host one as welll ... i m the only 1 Thal in my entire relative (brotherhood) ALHUMD-LILLAH , but he never let me feel that i m alone , they always care for me, when my cousins sit togather they also start searchig for me to keep me with them .. i like dark corners as it has been my favourate plce rest of my life , but they never let me sit in dark corner and took me with them where-ever they are going.... i feel very fortunate/lucky to have such a loving caring and encouraging family and relatives..... but aside all of it , i feel it very difficult to move anywhere in any  part or wedding ceremonies, even if we plan to go out for dinner as well ..  as for wedding ceremonies and parties its looks like a burden to prepare you bag of medicine, seprate bag for insulin, a few packs of sweet biscuits to take in case of hypoglycemia and al other stuff , you cant take your mediicine most of the times in any wedding , that is wat i dont like ... as for now , i m awake from past 2 hours , Why ?? to take my medicines on time , with a little gap ..many times my relative said to me the same you mentioned , "YOU'RE CHANGED " i faced this as well...
well, trying hard to change myself and to bcome used to or get a solution for probs that bcome's like hurdles in my way to attend parties and to spend the time with other relative ( very difficult ) ...

its very nice to have people around you who understand you and know that to what you're going thru ..

Best Regards
Take Care
Umair

Dear sharmin,

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

Dear  Sharmin,

I dont think that anybody or "I" sets out to be difficult. sometimes, people is just being themselves without any pretensious attitudes, I believe ,we all need, to practice tolerance,lets be honest  Life is not all "positives"

 Unless we recognised the above we cann't ,really say that we understand.Having said that The word "Understand" can come across as a Patronising word  because we can" Empathy" with thier feelings . but not fully " understand"  thier situations that is because we are not walking in thier shoes.

Its society that dictates to us "we all have to pretend"Keep everything nice and calm don't rock the boat"in return we all live a fake life just to keep everyone" happy"


I hope I make sense and this was written only as an other point of view there are always few side to a story

Nothing is black and white there is a place for the shade of grey 

Kathy

Zaini :
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 call people like mentioned above  FAMILY'S POLITICIANs ( or brotherhood/brothery's politicians )
 

Sharmin
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

Family Politics , i dont like people who play politics with their relatives ... i have a few family politicians in my family as well ...

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

Tari bro, like that old women who was buying fudges again and again and wasn't eating them , she was buying just to share ... remember that FWD mail ?.... hahahaha

Take Care

I will tell a short story.

At high school I had a very close friend. We did lots of things together although we were in different levels. She always came to the hospital when i had a transfusion and stayed so long as she could. Anyway, my best friend was my grandmother who came from early morning to late evening (dinner with us) because she loved to be with me and have sometimes panic attacks when i am alone in the hospital - once i have been waiting for half an hour before someone turned the alarm of the pump off.
As opposite: a year long I have had transfusions in a rural village in the north. I had family who lived there, but my aunt came only three times, my niece (1 yr younger) twice 15 minutes and my nephew (2yr younger) only 5 minutes because my aunt said: you must make homework. Their youngest child (10) was too young to bring me a vist.... my grand mother could not visit me then but she gave me some money for the restaurant downstairs but they never let me go downstairs.
Ok, that friend joined me a few times to a day for chronical ill patients and their families, but I went always went friends. And when I was 16yr she explained why she did it. She did it because her religion said it (help other people) and that she was my buddy and not my friend. When i heard that I was so shocked that I never have allowed her to visit me.

My parents, I and cat could need some extra help I must say. But since grandmothers death we are the only one who live here.... There are not a lot of people in my family who realize how difficult it is.

Gotta go,

Dore
p.s. i am glad you all get so much help.

Ahhh..... Too Many lives, Too many stories , hope you will find another good/best friend soon, who will never forget to go with you for Tx ....

Sharmin,

  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. 

Its a hopeless case for me,a battle lost already.

Zaini.

Sorry if I sounded too depressed. Disease, good chel. Therapy, scared my friends. It's difficult to make friends & stay friends. I rarely go out, that cause probs too.Sounds that familair? I hope not. Hmmm, i never get visitors but most of times i dont feel lonely often. Family? Maybe next time;)

Sorry if I sounded too depressed. Disease, good chel. Therapy, scared my friends. It's difficult to make friends & stay friends.

I know what you mean. I think only a thal can truly understand other thal's feelings and that is the reason most of my good friends are @ my Thal canter. We plan same date Tx and go out have fun after Tx spend rest of the day (whats left after Tx) enjoying. When we all are out one or two have IV canola attached and others are on Subq at that time so we all are going thru same situation and don't feel odd this way.

I am finding that a few factors play a role for thals.  The first is that most people face turbulations in friendships and family, thalassemia patients and their families also face these normal turbulations.  Families dealing with this difficult to manage disease are already over exerting themselves and extremely stressed, therefore these turbulations become even more of a burden for them.  Thalassemia patients and families, along with facing their problems with management of the disease also have the normal life stressors that the rest of society faces. 

Secondly, thalassemia in all of its demands and the commitment required in its management places stressors on relationships with extended family and friends.   Sometimes it is the lack of time of energy that we have to left to invest in our friendships and relationships - because we have spent ourselves in dealing with the disease.  Having to spend days going to the lab, days in the hospital, doctors visits, various screening appointments, desferal - all of these things take time and effort and only thal patients and families can understand what it is like.  Family and friends, sometimes are unable to understand why sometimes we don't have as much time and energy to invest in our relationships with them. 

I think that there are people in our lives who unconditionally support us and trust that we are doing the best that we can under the circumstances, there are those who would give us their support and blessings if they knew what we were going through - I believe that they are the ones who make life difficult for us because they are feeling insecure.  They feel insecure because they do not fully understand how busy and pre occupied we are with this disease and they are hurting us because they are feeling hurt themselves - I think that this is what Kathy is referring to.  Kathy thanks for that - there is often more than one point of view. 
There is also a third group of people, who really don't care what we are going through - they will tell you - "So what if you have to deal with thalassemia, I have my own problems too." (Of course we have those problems plus thal) - they don't want to understand and they won't support us.   

I think that we need to take comfort in the people who will unconditionally support us, and invest in those relationships.  I think that we should give those relationships as chance - where upon understanding our situation - they would support us, and I think that we should learn to protect us from the people who will not understand and those that will use our weaknesses against us.  Experience will tell us where people fit - but once we realize the role people play in our lives we will know where to invest our energy.

What are your thoughts?

Sharmin

There is also a third group of people, who really don't care what we are going through - they will tell you - "So what if you have to deal with thalassemia, I have my own problems too." (Of course we have those problems plus thal) - they don't want to understand and they won't support us.   

These are the hardest ones,

And there is one more kind,they are pretenders,they pretend that they understand and that they care,when there is an emotional situation they will even shed tears for you,but when it comes to hurting you,i guess they just can't help themselves.That's where life becomes stress,and as Sharmin very rightly said,we have lack of time too,because of so much going on in our lives at the same time,we don't only have to take care of our kids,their schooling,their sleep timings or their eating,but we also have to deal with thalassemia,we have appointments,we have tests,we have transfusions and with all that our kids also get sick like all other normal kids,which again adds to ur duties.

And parents of thal majors are thal minors themselves too,which is not totally asymptomatic as doctors like to tell,most of us get tired very easily,we get stressed very easily ( that's what i think,that lack of oxygen does play a role in stress and anxiety if you are anemic chronically ).

And then sometimes we have to deal with rude doctors and hospital staff too,which in the end just adds up to the burden.

Well that's life i guess  .

Zaini.

Thank you, Sharmin (hugging emotion) x Door

The topic has been started long ago...but I guess it continues on and on...
Everyone has their own opinion/view/thoughts/judgements about things...that is what complicates our reaction too at times...
I am still young in dealing with it all compared to most of you all for Mo is just 3 and half now...and to my advantage I am in a foreign country where I am just learning to speak the language...maybe that is why it has been a little easier so far...
We have a few friends here...who are there to support us...but there are also some who pretend to understand and they often stir up anger. It is better that one doesnt understand rather than pretend to and use our life as a story of interest to others they know...I hate for my son to be used like that and then become an object of sympathy!
Unfortunately even some close relatives do that eventhough they are far away! I think people either should not react or if they have to they should not give sympathy...it feels like an insult when they do...Thal is not something to be sad about...of course it affects life but it doesnt keep the person away from life...!They pretend like it is the end of the world!
About having hard times...I guess life has them anyways...but of course having this site helps to know that we are not alone...
Some days are especially tough when my husband goes through that phase of asking 'Why us?' 'Why Mo?' No answers but just frustration! It becomes difficult to be strong all the time...Nice to have eyes here that watch and hands that wipe those tears...
Thanks Sharmin for these insights and also many more in the discussion forums...

Sharmin and Zaini

You are so right! I am truly blessed to have you all in my life.
I can be heard and understood without even saying anything.
The magic is that it is a place to vent or fustrate without being told "Stop being silly!"
You are my family! every single person.

 

I agree that a thal can understand a thal better than anyone else but I am not happy at all if this ends up to put us all in a ghetto. I think thals are people like everyone else and need to be part of the general population and not be closed up in a thal ghetto. We are like everyone else and we have thal. Thal is only one side of us. That's why I have always tried to mix up and make companies in and out of thal. I believe that  all depends on the image you pass along and let out.If you feel pity for yourself it gets out and everyone feels pity for you. If you don't, they don't.
Thal, no matter how hard it is, is only one factor and we must give it its right dimension. No more no less.

Lena.