Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Sharmin on January 03, 2009, 07:21:23 PM
-
Most people will face the blues in life. Sometimes this is due to circumstances and disappointments, other times it may be due to sheer boredom or the cause may be unknown. Those having thalassemia may be more prone to these feelings for many reasons. Feeling disadvantaged, having to deal with needles and pain, feeling afraid for your future, hearing of other thals who did not do well, complications due to thalassemia, physiological problems due to iron overload (that actually cause depression) as Andy has mentioned in another post, depletion of certain essential vitamins and minerals in the disease and many other issues that can lead to negative feelings.
I have been hearing about this since my son was a baby and I have been trying to prepare him for these feelings that may occur as he grows. I know that all children face different feelings and sometimes may feel sad for no reason. I have taken these opportunities to make them aware of these feelings and not become overwhelmed by them.
On a few occasions, when little A was 6 years old, he told me that he felt sad for no apparent reason. Initially, I was startled and hoped that it would not persist. When he complained a few times, I decided to share a book with him portraying many faces, each showing expressions of different emotions. I told him "Of course you will feel sad sometimes. Sadness is an emotion and emotions make you human - as does feeling happy, sad, surprised etc." This explanation seemed to make sense to him and he actually like it. I also told him that it was okay to be sad and disappointed sometimes, but that it is very important that he moved past these feelings and to feel happy and excited most of the time.
Other steps I have taken to ensure his emotional well being has been to ensure that he is getting his vitamins and supplements. At the time I did not know nearly as much as I now do (thanks to Andy and this website). Deficiencies can have negative impact on emotions. I also began educating him more about thalassemia and how all people have different challenges (allergies, disabilities etc).
Little A soon became quite mature about his feelings and was able to determine if he was bored, disappointed or actually sad. I also advised him to allow a certain amount of time for himself to feel these emotions because it was necessary to feel them, but that he should make sure he was always in control of his feelings and actions. I think that this is a necessary skill especially for a person having thalassemia. I then gave him tools to help him feel better when he was ready to move past the sad feelings - like doing something he enjoyed or engaging in something so that he did not develop a habit of doing "nothing" and being sad. I also told him how he could talk to others and get help. Although his few moments of sadness were not severe and were relatively short, they gave me an opportunity to make him aware of his feelings.
When my daughter was 5 years old she came to me saying that she also was sad for no reason. Much to my surprise my son began telling her that it was okay and that it meant that she was human. He told her 'when I was 6 is used to feel sad sometimes too...." I couldn't believe how well he helped her understand. The next day while sitting in the back seat of my car my daughter began singing a song she made up "sometimes I'm sad, sometimes I'm mad, sometimes I am happy....because I am human and I like having feelings because it is better than not having any feelings at all - but I am in charge because they are my feelings..". I was blown away because she had learned this from her brother.
There are days when we need to review all of this with our children. During the difficult situation we faced this summer, we all required a lot of refreshing and relearning. I also realized that the numerous meds he was given as well as the time spent in the hospital depleted little A's energy. A nutritious diet, supplements and a lot of positive talk and actions helped greatly. As Andy can tell you, I shared pictures of little A with him from June and then December - along with the unbelievable physical change - the energy and excitement in his eyes is the biggest change.
I think that it is important to let thals talk about their concerns and feelings. It is important to acknowledge that they face a lot of difficult situations and that it is okay to feel bad about that sometimes - as long as they are feeling good most of the time. There must be more good than bad - A LOT more good than bad to live a healthy balanced life. Trying to live as normal of a life as possible is very important, because being sheltered emphasizes the negative and keeps thal with you in a negative way all of the time. Being engaged in life in whatever manner possible is important. Finding out what you are good at and doing it is very important. Helping others and making a difference in other peoples lives is very very important. It is also important to do things to engage in things that improve your own health because that reinforces how important you are and how important your health is.
Remember, along with acknowledging your challenges and the negative feelings they may bring - it is very very important to acknowledge the positives and all that you can do. Taking control is very important - take control of your feelings and your future and then your life will look more the way you want it to. There will always be things that you can't change - so change what you can and change it to the way you want it to be.
These are some of my ideas and what has worked for me - emotions are most of the battle in thalassemia. Emotionally healthy thals do better because essentially they are in charge of their own health. I look forward to hearing your ideas for myself and to help some of our adolescent and adult patients in dealing with their emotions.
Sharmin
-
Dear Sharmin,
Thank you for your article. I realise that I still have a long way to go. I have been very depressed in my teenage years and later. I won't discuss all the things here, but it has been hard. I haven't close the history fully. It's again pretty hard since I realised what real friendships means, and it's a bit difficult to start new ones. When 2008 ended I realised that I have learnt so much this past year. I really believe I have grown in my emotional "system". I hope I'll can do the same thing in 2009. Oho, I ran out of my words.
Thank you once again and good night, Dore " " cant remember the right word :shy
-
Hi Peartree Girl.
Remember" What does not kill you will makes you stronger ",You only ,need to know how, to learn from you mistakes .
I have followed your postings on this forum I think you are a well articulated young woman.
Have faith in yourself and gives the heaven about a look from time to time.
Good luck girl.
-
The strength lies in knowing how to sit out whatever emotional trouble we might have untill it passes.
The sun always shine after the dark cloudy days.
Knowing and feeling the above words made a huge different in my life,
I hope it enlighten some'
Sharmin keep up the good work :hugfriend :hugfriend :hugfriend
With love from Kathy
-
Sharmin, thank you is so little for this wonderful post. I have to apply what you said first on me cause i need to learn how to control my contious stress and axiety first. In these past two and half years i am having a very neagtive impact on my family especially my children. It seems that i am trying to learn as much as i can about thalassemia but on the other side i am causing a lot of tension to who ever deals with me and i think that my children are becoming very tense all the time and i know i am the reason because of my impatience and stress. Sometime i think of seeking medical help but i just know that you are only put on antidepreesent that you become addict to and i don't want to end up with this. Pray for me to get control over me
manal
-
Dear Manal,
You are not alone - as parents we try so hard to make everything perfect for our children that we become run down. We are mentally and emotionally fatigued so please take it easy on yourself:) Remember to acknowledge the positive effect you have on your family. You take on this stress to benefit your family and it is much needed. The normal stressors of life continue to happen too - too bad we can't put up our hand and so "sorry, I have enough going on so I can't take you on too...." Sometimes it seems that there is no quota for how much stress can come our way. I think we should be pretty proud of ourselves each day that we get through it. Manal, we have all learned so much from your calm and rational way of thinking - and how caring you are about everyone. I have met very few people who are as persistent as you - and who have the ability to take action for what they believe in. Hats off to you my friend.
Remember the positive is all of the wonderful things that thals actually can do - and how promising the future can be if we are compliant - and research continues to go well.
As for being stressed - trust me, I can be a royal pain somedays :wink
Dore and Kathy thank you for your encouragement. I have learned a lot from you both as well:)
Sharmin
-
Sharmin, thank you is so little for this wonderful post. I have to apply what you said first on me cause i need to learn how to control my contious stress and axiety first. In these past two and half years i am having a very neagtive impact on my family especially my children. It seems that i am trying to learn as much as i can about thalassemia but on the other side i am causing a lot of tension to who ever deals with me and i think that my children are becoming very tense all the time and i know i am the reason because of my impatience and stress. Sometime i think of seeking medical help but i just know that you are only put on antidepreesent that you become addict to and i don't want to end up with this. Pray for me to get control over me
manal
It's the same with me,may be more harsh,Sharmin knows very well.
Thanks Sharmin,
Zaini.
-
Thanks Sharmin for the compliments and the encourgement. I only hope that the benefits will be more than the damage one may reflect on the children :dunno :dunno Anyway, come on Zaini we have to be optimistic as Sahrmin said and try hard and hard to control our behavior with our children so we wouldn't be like the bear that killed her friend :-\
manal
-
You are right my friends. If this is something that is working against us then it is something we all need to address and work through. We are doing so much else for our children that we need to find a way to give them our patience too. It is important to get to the source of the frustration before we can do that - and to deal with what frustrates us so much. I think that some of the issues have to do with being a mother - and the other has to do with dealing with thalassemia. In trying to make things perfect for tomorrow perhaps we forget the basics of life - like being happy today.
I also think that we set an example by handling situations in certain ways - perhaps we need to figure out what we want them to learn.
I will definitely try to post some of my ideas about this topic because it hits home with so many people - I would love to hear your ideas. We all have so much to learn from one another. It is amazing what we are able to come up with when we begin talking.
Thank you in advance,
Sharmin
-
well my way to deal with people is :
if somone through and hit you with stone, then its ur duty to shower flowers on him , but .... including with flower pot :happydance :rotfl :happydance :rotfl :happydance :grin
Umair :grin :biggrin
-
Umair you are hilarious :rotfl
-
Umair, that is really sooooooo funny :hugfriend
Sharmin, we are in great need of discussing these ideas. It will be very beneficial to all of us , especially me :-\ will be waiting for those ideas too
manal
-
Well i don't have any ideas,but i'll definitely be the one get benefit from any such ideas,coz as much as i try to control myself,i loose control and loose my temper too,and then i feel guilty about it.I know i care about my kids a lot,but the question is " do they think so? "If not,then it's definitely my fault.
Zaini.
-
thank you all ,
its wat the peak of my anger ,, its like a sweet knife .. haha haha .. dont care abt wat people saying just ran over or left them wat ever the say .. you cant put your hand to anyone's mouth soo let them say wat-ever they want to say or shower flower hahahhah ... another way to hanndle the people who always look to tease you ..for thse keep in mind that nobody is perfect in this world just have a deep look over them and find wat is his/her weakness is ,, most common weakness is " just to puzle thoes people you may say them hey you noose is too long or your noose is a little bended to left side .. take the people where they desrve and then they will never hurt you again ... when they won't to think before saying anything then why should you ??.. but answer should be very polite and with a smile it ... that will b like a sweet knife hahha ... i never minded anything if happened to me .. ignore that wat you dont like its the way to live a super happy life ..... i dont care abt wat people think abt me i do care only for those who care abt me my emotion and my feelings ... if anyone determined t hurt my emotions my feeling he will never meet to succes , bcoze i dont care abt wat he think abt me..... i just care the people near around me and my heart and those i live's in their hearts too ...
i hope i explained wat i wanted to explain .. please let me know if you unable to understand anything in my post ... .. take care and remember life is a motorbike when ever it trouble just kick it hard and it will start again ,...... HAVE A NICE RIDE/JOURNEY ...
BEst REgards
TakeCARE
Umair
-
Well i don't have any ideas,but i'll definitely be the one get benefit from any such ideas,coz as much as i try to control myself,i loose control and loose my temper too,and then i feel guilty about it.I know i care about my kids a lot,but the question is " do they think so? "If not,then it's definitely my fault.
I totally agree about everyword and this guilt adds more to our stress and it becomes like a viscous circle
manal
-
read this story n you will find that you cant please everyone : soo let them saying wat-ever they want to say and ignore them other wise world will laugh on you like travelers laughed on the father and son in the end of this story ....
http://www.kidsgen.com/moral_stories/you_cannot_please_everyone.htm
One day a man was going to market with his son and his ass. they met a couple on the way.
"Why walk when you have an ass to ride?" called out the husband, "seat the boy on the ass."
"I would like that," said the boy, "help me up father."
And the father did that willingly.
Soon they met another couple. "How shameful of you!" cried the woman, "let your father ride, won't he be tired?"
So, the boy got down and the father rode the ass. Again they marched on.
"poor boy", said the next person they met, "why should the lazy father ride while his son is walking?"
So, the boy got onto the ass too. As they went on, they met some travellers.
"How cruel of them!" They are up to kill the poor ass." cried one of the travellers.
Hearing this, the father and the son got down. Now they decided to carry the ass on their shoulders. As they did so, the travellers broke into laughter.
The laughter frightened the ass. It broke free and galloped away.
Take Care
-
Umair,
Dear,it's not the problem of some one saying something,or people saying some thing,it's not people's comments or opinions which are bothering us,they do,but atleast my problem is patience,i loose my patience tooooooooo soon,i care about my kids,especially Little Z,i spent my hours searching,reading,finding new things for her,i keep track of her meds,i am spending a lot of money on her supplements,as you very well know medical care in Pakistan is very expensive,just because i want her to be healthy and happy,i'll never want her to think that there is something wrong with her,but when it comes to my patience,ARGH!!!! Everything goes down the drain,
Every day life stress definitely adds to it,you talked about ignoring what people say,my problem is,people who matter in my life doesn't say much ,if you know what i mean,if you are struggling with so many things at a time in life,you want people for whom you care,you love,and who hold much value in your life,to be appreciating,encouraging.Words don't cost any money.
I guess i have said enough,it's a bit embarrassing,but that's the way it is
Manal,
You always sound like a very composed person,it's hard to imagine you have any problems with patience,but i think we all have our stresses.
Zaini.
-
Ja,Ziani:
I would like to hear more appreciating (or attention) words from other people. That is what all humans want. But I believe that people who need it, hear it not often enough. We can not fight this battle by ourselves.
xxx
-
Ja,Ziani:
I would like to hear more appreciating (or attention) words from other people. That is what all humans want. But I believe that people who need it, hear it not often enough. We can not fight this battle by ourselves.
xxx
My thoughts exactly.
Zaini.
-
Dear friends,
sorry for the late reply, little A had a fever yesterday and he has been a little under the weather. I will share a few thoughts for now.
I think that it has been helpful to know a number of mother's have battled the guilt of not being as patient as they would like to be with their children. I think many of the mom's have assumed that all of the other mother's are patient and calm all of the time. As you can see, this simply isn't the case.
Keeping in mind that we have thal minor and a whole lot of stress in our lives, some of it caused by people in our lives who we cannot avoid - we need to come up with solutions that are healthy for us and best for our families.
My first solution is taking time to plan our reactions to difficult situations so that we are in control of our actions. I think that we all agree that we want to act in a way that is in line with our beliefs but sometime we lose site of what is important and we "lose it" in certain situations. The result of this, our children suffer and we feel a lot of guilt. Let's say that we lose our patience in certain situations, such as getting the kids ready for school in the morning. Perhaps we can plan before hand what our expectations are of the kids when we get ready for school in the morning.
Secondly, if we find ourselves losing our patience - rather than continuing on and beginning to scream and yell - we should take a moment to stop and force ourselves to behave in a more constructive way. Making one mistake does not mean continuing to make more, just stop.
Remember that children need discipline and thalassemia children need it more than other children because they will need discipline in order to keep themselves healthy. Therefore we need to be firm rather than angry and frustrated with them. We need to be patient toward them in order to instill patience in them. We can do this by changing our mannerism into a firm one. This can make all of the difference. Take control in some situations - speak directly and firmly - don't accuse or try to induce guilt in the chilren - just be direct about your expectations. Other times, where you can, give them choices and control and when they practice good habits cheer them on.
The greatest frustration comes with trying to do too much in the day - we are always rushing ourselves and our children. Therefore we are more busy trying to rush them through things rather than letting them live. I wish I knew how to change this.
I think that we need to know our goals - and then work toward them. Remember, life can be tough let's take it easy on ourselves and our families. Give yourself a time out. Stop when you find things getting out of control - take charge of your own actions.
When we allow things to bother us - negative chemicals and hormones are released in our bodies and the bad reaction continues and soon you can lose complete control and have a full tantrum. Take control before these chemicals are released - calmness can counteract this negative effect. Doing this is better for your health too:)
I will write more once my little A is feeling better, I am very eager to hear your ideas and responses to what I have said.
Sharmin
-
Also, if I may add - moms are very hard on themselves. Have you ever seen dads try to take over for a day or two? The yelling would be at least twice as much :wink
-
Manal,
You always sound like a very composed person,it's hard to imagine you have any problems with patience,but i think we all have our stresses.
This is never the case Zaini :whyme :sadnope :sadnope, sorry that it didn't go with what you thought :think
Sharmin,
Sorry to hear about little A, hope he is feeling better now, wish him a speedy recovery :getwell :getwell :getwell :getwell
Thanks for te valuale ideas, i will take sometime reading it again and again and definetly i will follow your advices. They always work Sharmin :happyyes :happyyes :happyyes
manal
-
Thanks Manal,
He is a lot better today and he has a transfusion tomorrow:) I hope all goes well.
Sharmin
-
:getwell :getwell :getwell :getwell :getwell
:getwell GET WELL SOON LIL A :getwell
:getwell :getwell :getwell :getwell :getwell
Umair
-
Sharmin:
What you said is absolutely true... I would like to see some of the fathers of thal major patients try and take on the role of mother even for a day...
I seriously doubt that they could do it!!!!!!
There are a few exceptions though like the gentleman whose son had the bone marrow... Sorry if I cant remember your name... But I take my had off to you... Your one of a kind :hugfriend
Hope little A is better, I know what it feels like to be alittle under the weather when your due for a trans... I get like that too...
Take care all
-
Thanks Smurfette :hugfriend
It's tough when colds and low hg comes at the same time. He is doing much better today and he had his tx too:)
I was showing little A some of your posts and pictures - he thinks you are awesome :)
Have a great day,
Sharmin
-
Sharmin,
I hope Little A is much much better now :hugfriend
You are totally right ,and whenever i loose my temper and then when i feel guilty about it,i always try to convince myself that i won't happen again,whenever i'll feel like i am going to lose it,i'll take a deep breath,will drink some water and there are some verses to be read to control your temper,so i'll read them,but in the end i forget everything.I just need to be very very patient and calm and i am trying to find how?
Talking about dads,you are right that they won't take charge of kids,my husband never does desferal or keep track of meds or supplements my daughter is taking,he is sooooooo busy with his business,i don't want to blame him as i know economic conditions are hard enough,but eventually i do complain,and it just adds to my guilt.
Pretty messed up i am :huh :huh.
Zaini.
-
From the perspective of a father, I try best but yes the responsibility of medicines and take care of my daughter is mainly with my wife and she does a wonderful job, though I see the sentiments expressed here are the same for my wife.
Do I appreciate her verbally, may be not and I won't hide under "its a guy thing", its a mistake I learned today. Where do I start or can I do it? :huh
-
Hi Canadian Family,
Yes you can definitely do it,just an appreciative and encouraging comment here and there will be fine,with sincerity ofcourse,which i am sure you have.It will give her a new boost of energy you'll see,i know it because i miss it :) .
Zaini.
-
Thank you to everyone who wrote on this topic. I am the mom of a thal major little 2 and 1/2 year old. It breaks my heart to see what she has to go through, yet I am truly grateful for the care she is getting. You see, we adopted her from China (a very poor province in China). They did not know her condition and would have likely never been able to diagnose it. They did take very good care of her - and it was obvious they cared for her. Within 3 months of coming home she was diagnosed. We were devastated.
We treat her condition like it is completely normal. She shows people where she gets her blood and she gives and takes blood from her stuffed animals. We always let her know when we are going a few days ahead of time.
I must admit, I hate for her to have to go through all this. In trying to keep things "normal" I wonder if we treat it too "matter-of-fact". But, of course, for her it is matter-of-fact for life. When I get tired I start to question myself. My emotions depend upon the day and even during the day I can change a lot.
But no matter what - I think she needs to know that she is "normal". We believe she is normal. There are a multitude of health conditions and she just happens to have one that requires a bit more discipline.
Do I make any sense at all?
-
But no matter what - I think she needs to know that she is "normal". We believe she is normal. There are a multitude of health conditions and she just happens to have one that requires a bit more discipline.
It is a wonderful attitude,it will definitely help your daughter grow up in a confident person,wishing you all the luck :) .
Zaini.
-
super attitude ocwoodmanp ,
Wish you all the best of luck ...
Zaini Sis ,
you wat , yesterday i went for TX , there i was discussing to thals center's doc , that thalassemia isn't a dis-ability or illness , i said that it is only a deficiency of red blood cells whic you may see in many people and many other defficiencies ,, like iron, vitamin, or mineral defficiances, i was saying that " as other deficiencies , if we treat it properly main our Hg and iron level in normal range then its nothing like a probleme " i was saying that convince patients abt it i was convincing her to tall the patients about it so they may live a better life , then sudenly one of us she said " but our societes won't to accept this reality , " then sudenly a phrase came in my mind, and i said to her as wel that you people have to take this thought out to thals mind , it was [bgcolor=#ffff00]" haye bechara , esko tou blood lagta hai [/bgcolor] " people love to say this phrase bcoze they want to show their sympathies but they dont know that they kill's their courage , khair , it doesn't matter in my case who and wat ever peoples are saying ... for those who take it on their heart n minds , we have to vanish the impacts/effects of that phrase to their mind ...
hey zaini sis, please translate that highlighted line into english ,,....
Best Regards
Take Care
Umair
-
Yes Umair,
You are right,sympathy might be a good emotion,but i hate it when people use it where it's not needed,like when the know you are a thal and whisper among themselves "Poor thing,he has to transfuse blood every few weeks,whole his life " ,they don't understand that their muttering isn't going to help that person,a smile would be helpful though.
I think i translated your sentence :) .
Zaini.
-
Thanx Zaini Sis ,
you translated right ,thanx for the favour ... :)
-
Writing into this post feels like I am awakening a dormant volcano...well firstly because the post has been hibernating for a while and secondly because I doubt if I let my emotions completely surface ever before...
Moms are primarily the care takers of children as a naturally taken for granted thing I guess... and men are the procurers of things needed...like the food in the cave men times and now money!Of course women work too now, but the child bearing and rearing still is with them...
So being a mom is a lot more than one knows at the start....the cute commercials fail to show all those things!They only show the cooing babies and the pink and blue baby objects and lovely cribs etc etc... They forget to highlight (of course on purpose) the huge responsibility having kids is! And this includes all kids...irrespective of their thal status!
But truly thal does evoke many emotions other than usual too....It begins with the realisation at diagnosis, then guilt,anger,acceptance,then facing it all...coping with it alone and as a family, facing the world as and when it comes...,the financial aspect, loneliness, bad days wrt levels of various and plus other issues not related to thal as well!
Men and women (as umpteen people have written and earned money!) have different ways of dealing with issues and also how one has been brought up makes a difference to it all too...then how one is placed financially too matters...
What one must understand or be reminded in the 'bad day' phases is that everyone has problems-even those without thal....or without a thal family member...
Probably what hurts the most is that sometimes people fail to understand this(as someone had already mentioned in another post)aspect of having problems like the others plus thal....
And sometimes it is difficult to find the support or reaction one expects from family members-immediate or otherwise and that may be interpreted wrongly...for all those who think that dads dont contribute much towards the management, I think so too...but I guess they dont know otherwise...men are like that and have been like that...acknowledgement and appreciation is definitely something they can do and I guess women arent asking for much!
I do respect and appreciate the courage of ocwoodmanp...I dont know how I would have dealt with it myself...You sure have abundant love within your hearts and surely are angels from heaven! God bless you!
As I was reading all the posts, I was thinking about writing so much, but I feel that I will lose myself in the words...so the rest for another time.....
And yeah I would definitely like to add one thing about this site...what is the best part is that we are all more than a family because sometimes even in a family one is ashamed or embarrased or plain uncomfortable to be completely honest about ones emotions and problems!
Take care all....
Madhavi