Thinking of death lately. I'm just not okay

General Discussion
#1

Lately I have not been okay. I have been sick physically, emotionally and otherwise.
My tenofovir tablet and drugs have finished for sometime now, but no money to buy more because I have not been working for some time now due to my health. I have been planning to go for ultrasound, labs and treatments but I can’t because they are very expensive here and no money for that. I have been feeling my belly rising, feeling short breaths, dizziness,Frequent urinations,fatigue. I pray it’s not ascites, cirrhosis or fibrosis.
Why is the treatment for hepatitis b very expensive?
Is there no organization or agency that provide free or subsidized hepatitis b treatments like in AIDS?

I have been thinking of death lately.
I am 30 living with hepatitis b and chronic duodenal ulcer. I always think to myself, why me?, why getting what I didn’t ‘pay for’. As a person who became a Christian very young, as a teen, I have been keeping my virginity, even up to now. But how come this infection? I always ask.
It hurts to know that I got the hepatitis b infection through blood transfusion as a new born. I didn’t discover it on time till a few years ago.

I now ask myself, does it mean I was destined to die young. I am just tired tonight.
If I remember how my mother feels and would feel if I’m no more, it leads me to tears and pity. Guess I’m afraid because of what I’m feeling.
I really want to live long like everyone else. I have a lot ahead of me.

I don’t really know what is wrong with me. I’m a male nurse, not working now, yet I can’t help myself.
This is the only place I really express myself freely.

Now I know how depression feels. Indeed.

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#2

Hi johnpaul_ezekiel
I have gone through your story and as a professional counselor,I am certain you may be having some difficulties but you are not depressed yet.further I am sincerely sorry for your in ability to secure treatment together with other sicknesses.
Which country do you come from?
I am not able to help at this time but I hope you will get the help you need here.

Kinoti.

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#3

Thank you for your words. For what it’s worth, I’m from Nigeria.
Johnpaul Ezekiel

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#4

Hi John paul_Ezekiel,
There’s a combination drug used in the treatment of HIV called 3TC/TDF. As an ant viral drug, it is given for free as a donation from USAID. If you can’t afford hep b treatment, you can find out if you can get it in your country as we do in Kenya. Am almost sure you can.
Wish you all the best and keep us posted.
Always
Kinoti

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Getting difficulties to get hepatitis drug
#5

I will try and ask around for it. God will richly bless you and your family.

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#6

Dear @Johnpaul_Ezeike,

Thank you so much for sharing how you are feeling. I’m really sorry to hear you struggling at the moment. Yes, Kinoti makes a good point about seeing if efforts in HIV can help you. There may also be some organisations in Nigeria that might be able to help you: Member listings – World Hepatitis Alliance

These feelings are normal and many people on this forum have gone through the same emotions as you, you’re not alone.

Some important issues that I wanted to talk about from your post:

I don’t think of having Hep B as something that is “deserved”, particularly given that it is mostly new-borns who get chronic infections through blood-to-blood contact. In Nigeria, almost 10% of the population has chronic Hepatitis B and I think it is not fair to think that all of them deserved this.

Hepatitis B is not necessarily a death sentence, and many people do live long lives. We can see that already from people on this forum. You are not destined to die young.

Finally, I am really glad you are sharing your experiences because I am almost certain that there are people out there feeling the exact same thing. Because of your openness, I think they feel a little less lonely at the moment. I really thank you on their behalf and hope for all the best from you. I hope that makes you feel better in knowing you have helped others.

Yours sincerely,
Thomas

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#7

Hi @Johnpaul_Ezeike,

Kudos to you for being able to speak out so honestly and genuinely about what you are going through and the psychological aspects of what a chronic disease can do to us mentally and to our spirit.

I was born with Hepatitis B but never really had to deal with it much until about 5 years ago when I was diagnosed with cirrhosis. I had a lot of new health issues afterward and still deal with many of them today. The physical pain is one of the hardest things I have to deal with.

What resonates with me is how you describe your depression and anxiety. This is something that almost all of us go through to some extent. But yet, I really don’t think we speak on it that much. We want to be encouraging and uplifting so most of us never share the true hardship and struggle that we may face due to this disease and this tragedy. I know that words like tragedy is not what many want to hear. This disease and the millions of people it has killed and the millions of people that suffer around the world because of it, is a tragedy. Each individual person that has to suffer, live through and struggle with this, is truly a tragedy by definition. The fact that so many people have the fortitude and adaptability to live through that tragedy is what turns it into inspiration, courage and victory.

The fact that we have a community where we can share openly without judgement is a victory. The fact that you were able to find this community, join and share something that in most modern societies today is still taboo, and you were able to speak with openness about depression and anxiety and fear is a victory. I commend you that you did that because I also suffer from depression and anxiety. People will mention it here and there but nobody really wants to delve into it too deeply because it is a negative topic and something that I think we fear within ourselves and are so afraid to speak out on and then not be accepted or be looked down upon, belittled or cause discomfort in a topic people really don’t want to approach.

I truly hope that your example will help others to be so forthright with their deepest suffering because I too feel that fear to share those deepest of demons within me where I suffer so much with medical issues and pain that sometimes I wish I would just not have to wake up the next day. Hopefully this type of topic will be more and more acceptable over time and even in this community because if we are open and honest about it and it sees the light of day with compassion, then it’s a lot more conquerable.

Sincerely,

-Paul

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#8

Sorry to hear what your going through. I m older than you, so it could be really depressing as a younger man.

Please don’t let a bad day, week, month, or even COUPLE years dictate a bad life for you.

I hope you find the help you need. Change your diet, exercise if possible, even if it’s just walking, take whatever natural remedies are out there for hep b you can get your hands on, and stay positive. Not having access to medical help has to be tough. I guess even at my age, I wouldn’t really know what to do. Hope you find an organization that deals with hepatitis b around your way.

Prayer sent.

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#9

Very happy to hear from you. I felt like crying at the same time reading your writing. I don’t like to throw a pity party. I have been the strong type, with strong intestinal fortitude but I guess I’m losing it. I tell myself, I’m young,in my prime with my visions ahead. I just got my second degree, with plans ahead.

Reading your words reaffirms what people are going through. If you are healthy, you may not know what you have. I pray everything works out for you

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#10

I have been tempted to delete my first post because of how sensitive it might seem. But I guess it is too late. I have started already.

Just this morning, I noticed I have been passing fresh blood in the loo,with no faeces.

My health now really needs an overhauling, as it were.
No wonder the symptoms I feel.

Thank you guys for your words.

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#11

Thank you for your uplifting words. They soothe

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#12

Hi Johnpaul,

I for one am glad you posted it and you do have fortitude because you had the strength to be honest and open. I hope knowing that many of us suffer in the same way gives you hope, especially in that, so many of us can understand the suffering you go through and even that many of us go through the psychological factors but just don’t express it and suffer it on our own; when it truly helps to have support and understanding.

Now, to you having blood and no feces during a B.M. could be a cause for concern. Do you have a doctor you can see about it? I do not want to alarm you because it could be something minor but my doctors get really concerned if that happens to me. @HealthExperts hopefully can give you some guidance on this.

Stay strong,

-Paul

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#13

Yes, I think it would be definitely wise to see a doctor about passing blood.

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#14

PuallyHVB
You did not share your experience because you wanted us to encourage you but rather to encourage a colleague. Your experience always depicts your heroism. You give me courouge to shoulder the burden of Hepb.
Kinoti

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#15

Hi Johnpaul,
I want to let you know that nothing is wrong with your feelings. Thank you for sharing and opening up on here. Anyone in your situation will feel the same and it is only human that you are thinking about death a lot lately. I can relate and empathize with you. For almost 6 years now I have not been able to work because I have been battling severe chronic fatigue and muscular pains. This is every day. I do not have any day off from these problems. I remember when I first learnt of my status, I had the exact same questions that you have on your mind. Why me? I have been good in my faith so why this? etc. It took me some years to come to terms with my diagnosis and be at peace with it. During that time I did a lot of research, through that I came to find out that having this diagnosis is not a death sentence. I will recommend that you talk to your providers/doctors about how you are feeling. They might know of a resource or have a friend somewhere who might know someone that can help. Do you also think you can maybe talk to your pastor about your condition? Having that support, someone to talk to and just vent to can be helpful. It does takes some of the pressure off. I hope and pray that you are able to find some help soon. Hold on tight my brother. It is easy to lose hope but I will encourage to hang in there. Take it one day at a time. Please do not do anything crazy, because that will only cause more pain and challenges for your family especially your mother. Sorry for the long message. Keep us posted.

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#16

Thanks @Bansah1. I really needed this. I will update everyone

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#17

Don’t mention. We are here for each other. Bright.

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