totally fed up

Hi guys
I started a new job this year and my work collegues are great but they do not understand this blood disorder at all. I get really tired so I have requested that my boss drop my hours back to 2 shifts per week. I explained it was because I get chronically fatigued and in the hot weather, i get very breathless and the heat makes me really ill. I explained that I have Thal Minor. I explained about the disorder and the irregular blood cells and so on.  I only ever wanted part time work from the start . This seems to be a common thing where ever I go. People do not understand this disorder (or simply do not want to understand). I am a in a delemma. I love my job and I can't afford to be totally unemployed. Is there some way that I can help t people to understand my situation?

I don't believe there's any way to make your colleagues (let alone the boss) more understanding and compassionate. Nobody has ever been moved by my persistent complaints about being extremely fatigued or all the explanations about my condition. Including my closest ones...
The only thing left for us is (somehow) to make do with the environment, the stress and the workload. Maybe you could start (or gradually increase) some sport activity to enhance your stamina. The human organism is extremely adaptive and even with such condition in time it should be able to accommodate and mitigate the exhaustion.

Well this is not fair, they must understand ur genuine problem.  I guess they need to be better huma to understand this. I can just suggest u to take Vitamin E as its doing wonders to me and overcomes fatigue. Its never easier for me to get up from sleep, but i discovered that when i take vitamin E before bed i really wake up esily and fresh. Try it out for urself.

It seems that in most narrowminded people's perception a disabled or handicapped person should always miss several limbs and be unable to see, speak and / or take care of his own toiletry. Everyone else is definitely faking or shirking responsibilities.
A good example would be: "Dear, it's all in your head. Snap out of it!" Same story with the IBS and all other disorders "invisible" to the others. Well I've seen a lot of that and I'm also fed up with it.

Theresa,

It is difficult for people to understand a health condition that they do not have.  I would suggest finding a part-time job until you can 'build-up' to handling a full time position, or maybe find a full time employer that would be more understanding of your condition.  Generally, a full-time employer is going to want you there every day that you are scheduled to work.

My employer is not aware of my condition (Beta-Thal Intermedia).  There are times I dont feel like working, but I get through it.  If you take good care of yourself during your off-time, it helps you make it through the work day.

Get plenty of sleep, B-12, Folic Acid, healthy meals, and Vitamin D.  This will help you.

Good luck.

Bill

I can understand this situation very well.

I was also searching a Part time Job considering my health criteria but unable to find such one.

Now i am focusing on health first. When u have enough strength u will be able to do not a full time job but also the overtime work.

So priority should be HEALTH , I F YOU FOCUS ON HEALTH, rest will automatically fall in place.

Ask any question on recovery of health, stemina.
FYI i am having thal major

Managing stress should be top priority. Stress (new job, conflicts, financial problems, etc.) could bring down any healthy person let alone thalassemic. Find your best way to manage stress - hobbies, sport, cognitive-behavioural therapy - anything that works for you.

I can totally relate to the opening post. I told my new boss about my thal yesterday and she looked at me like i was crazy. A co-worker even went as far as to make the statement, i assume "thinking aloud" saying, "you'll probably die young then." 

its weird how people react when you explain what thal is.

Hi Chaos,

Do you know that , Why there are two ears?

Coz if there is something which you listen from others, unexpected, use your second ear and let that unexpected get outside your mind...

Let me share one thing with..
Since last one month i have joined Gym, everybody there are healthy, normal persons.. when i do exercise slowly to prevent muscle breakdown, actually it is muscle endurance exercise, they laugh on me about and feel that i am slowmotion . but i don't consider and accept what they say.

What will make difference is your result , when they look the result they will keep quiet.
Just take healthy diet, keep hb at good level and iron under control, supplements etc. and then u can work like normal person.

Hi Chaos,

Do you know that , Why there are two ears?

Coz if there is something which you listen from others, unexpected, use your second ear and let that unexpected get outside your mind...

Let me share one thing with..
Since last one month i have joined Gym, everybody there are healthy, normal persons.. when i do exercise slowly to prevent muscle breakdown, actually it is muscle endurance exercise, they laugh on me about and feel that i am slowmotion . but i don't consider and accept what they say.

What will make difference is your result , when they look the result they will keep quiet.
Just take healthy diet, keep hb at good level and iron under control, supplements etc. and then u can work like normal person.

Perfect attitude D.

Sometimes in college too, most people often comment on my height (not too short, but obv not as good as others, but it's increasing and I'm trying my best to gain max height) but you know what, I don't give a shit, I simply smile at them and say "you might have nice height and body but obviously a small brain, I feel sorry for you." and they all get their mouths shut when they see my talent. I don't let anyone affect me the way I live. Yes things can get depressing sometimes but getting up or coming out from that small gust of "emo" thingy doesn't take too long.

-P.

Pratik,

Height gain and weight gain need aggressive chelation in your case, and u r not doing it aggressively.

Chelation combined with Diet (normal and natural) can definitely increase ur height, whatever ur chronological age is.
Your biological age is behind the chronological age.

chelate, chelate, chelate and qualititive diet...

Whats ur current chelation schedule.. kelfer, asunra,?

Pratik,

Height gain and weight gain need aggressive chelation in your case, and u r not doing it aggressively.

Chelation combined with Diet (normal and natural) can definitely increase ur height, whatever ur chronological age is.
Your biological age is behind the chronological age.

chelate, chelate, chelate and qualititive diet...

Whats ur current chelation schedule.. kelfer, asunra,?

Kelfar till I solve stomach issues.

People can never truly understand something that they are not experiencing themselves.
I mean if we look at people who stutter when they speak, it seems so easy to easy to converse, effortlessly! Yet somehow, for them it seems like they are trying to climb a mountain. The struggles in that, we can't even begin to imagine!

The only way really is to undertake self-improvement.
Vitamins, plenty of sleep, a little bit of exercise, and your mind set can do wonders for yourself!
Personally, I take my multivitamins every morning (the one without iron of course ;) and try getting as much sleep as I can in a day! Also, it's good to work your stamina a bit, hence brisk evening walks or even cycling around a lake. It's good for your mind and body!
You will definitely see a huge improvement in your quality of life with just some extra efforts.

The mind set is also I think very important. My parents raised me to think that I'm not special, that I'm just like any other 7 billion people in the world and that there are others even worse off than me.
I guess that really did change the way I handled my thallassemia. I hated when my teachers wanted to give me "special permit" to not do sports, or when people gave me their pity face. It made me challenge myself even more.
At one point, i took 2 part time jobs and yes, that was tiring as hell but it was a personal goal that I achieved.

Start mixing the 2 in life and it'll start to become better!
For sure

Loves