Coping at the bottom

[SASA39]

At last things have reached the bottom...................

For the first time I had hug my older daughter (10 years) and she did not wanna left me go of that hug and kisses .........

I was hugging her and my soul was screaming..............because how to reveal the truth to a such innocent being.............

Was talking to my wife..........she has broken down and cried saying : "I could never trust another human being after this...........I know that you love me , but now I`m feeling mistrustful towards any human being because you have betrayed me in a way......."

And I have !

"........And do not dare to do somethin stupid because children would immediately see that their part of guilt in that your act "

And now I love her more than ever , because she has just showed her love towards me..........How can I ever repay back that..........And I do not wanna see her one day old without me but with pain in her soul......
She was fighting for me , and had future in a workplace as PhD........could not imagine what it would be if a truth would burst out........and I`m socially secured through her social bill.............

Father and mother in low keep asking why I`m not working, but my body do not wanna listen...................petrified of disclosure to them..........

How do you cope this..............?

Any advices?

Sorry because I`m in this kind of a mood but it seems to me that this is one of these days...............
Quote "guyinsouthala" :"Good or bad, 98% of my support system and hiv social networking has come from right here in the forums!"
Because there are none of support groups here in Belgrade................
Please forgive me...............for annoying you.........wrote it down to a "HIV rollercoaster first (and all other year) syndrome"

                                                         Al

[antibody]

i have been bummed out lately and feel a sense of guilt that i  should tell my parents about my status. i am on disability right now and have avoid them because i don't want them to worry over nothing. i am fine and will be healthy for a long time to come but i know them. they will worry too much. i really have already put them through a lot. i was a punk when i was a kid and got in trouble always. i had a heroin addiction that they were essential in my recovery but will never live it down that i am an addict. they always ask if I'm clean and i know it's because they love me. they worry i will go back to drugs ( I've been clean since 1/13/2000). i really hate to put them through anymore trauma over my HIV diagnosis.  the only family i have told is my sister and my ex-wife. i know i will have to come to grips and tell my mom and dad soon due to my sister can't keep a secret. and the real bummer is my ex-wife wont let me see my son. all because she is ignorant about HIV oh and I'm gay. i guess i hijacked? i was trying to say i feel something in common with your post. as far a coping? it's starting to tear me apart. i get angry about it he is 13 and i miss him.

[SASA39]

No hijacking at all :
"every man thinks his burden is the heaviest"

[Central79]

Dear Al

I've been reading back through your posts, because perhaps I haven't been paying as much attention to you as I should. To be honest, your written English is sometimes a bit tough to figure out, and you generally write about really difficult stuff, which I tend to (with one exception) sweep under the carpet.

I cannot imagine how difficult your life must be, and feel a bit presumptuous trying to advise you or even comment on your situation. Most of the people on this site struggle with depression, or other emotional problems, or insecure finances, or relationship problems, or social stigma, or illness, or poor provision of healthcare or unstable employment. I think you are the only person who's story I've read on here that seems to suffer from all of them. The only problem you don't seem to have is addiction - that's not a suggestion btw. 

I don't know what I, with my comparatively minor problems, have to offer you. For a start, you are NOT annoying me. It's just a bit daunting.

I think the first thing that I can say to you is please, give yourself a break from the relentless beating-up you seem to be giving yourself. I know it's hard, but you have to try to let it go. The concrete block you wrote about in another thread isn't in your throat, it's in your arms at a time when you are swimming for your life. Unless you let go of it, you are not going to be able to attend to the practical stuff that you need to work on in order for you and your family in order to get through this.

The second thing is - it's okay to feel shitty. You've only been diagnosed for 8 months, which is no time at all to process and begin to adapt to something as massive as HIV.

From your first posts you talk about things that you worry might happen in the future. This is something I do a lot of as well. No man in my family has lived to be 60 in living memory. So with HIV, I'm feeling a bit fucked. But concentrating too hard on the things that killed your parents and that might happen to you are going to really screw your life up, right now.

Take the example of lung cancer, which killed your parents. What can you do, right now, to avoid the same fate? Do you smoke? If so - stop. Once you've stopped, take a moment to feel good about it. Score 1 for Al. If you don't smoke, feel good about that - score 1 for Al. Either way, you've taken control of an aspect of your health. I've started making a list of all the stuff I'm worried about in the future. Next to each problem I write down something I can do, or start doing TODAY that will make a difference to me then. Once I've done that, I see if I'm still worried in another list, and decide on something else I can do, right now, to make it a little bit better. I've given you the example of smoking and lung cancer. This works very well for practical problems.

I think the emotional stuff is much, much harder. Without sorting that out, you're not going to feel like you can deal with the practical issues - like getting hold of decent medication, your social security card, your job. You write a lot about the stigma of HIV in Serbia, and how massive it is. I cannot imagine what it must be like to live in a system where you are so overtly discriminated against because of your HIV status.

But stigma is only powerful if WE buy into it - so the question is, do you believe it? If you don't, then act in your own best interests - if you can't disclose, don't. Be hostile - tell people to fuck off, and that it's none of their business. Don't disclose to the dentist. If they're going to discriminate against you - fuck them, you need your teeth seeing to. Think of it like guerrilla warfare - you're fighting to get as healthy as you can, so you can be there for your kids and family in the future. You face a hostile environment, so be hostile back - anything to get what you need to keep going.

When you hit a CD4 of 500, make a fuss - say you still feel like crap, demand to be treated. If they withdraw your treatment, come on this board and tell us. I know that in the UK there are various charities that are collecting unused meds, and that a member here runs a meds salvage program. There must be something we can collectively plug you into. But try not to worry about it until you face it - it's a waste of energy. How would you feel if you worried about it for a couple of years, hit a CD4 of 500 and are then told that the medication supply in Serbia has improved, and you can continue? How much energy would you have saved?

Guilt. You made a mistake, you're human. You didn't infect your kids, you didn't infect your wife - that's something that you should celebrate. You talk a lot about guilt - guilt about letting your wife down, guilt about not being there for your kids in the future. Your wife had an affair - so she's human too! Despite the problems you have had, she clearly loves you very much, like your kids, and in adversity the strongest human bonds are formed. She sounds like she's there for you, and as you improve, so will she. Instead of feeling crippled by guilt, use your family's love to give you the drive you need to beat HIV.

Optimism. I really think this is incredibly undervalued in medicine. I have seen, first hand, the effects that a patients sheer determination has on the course of a disease. I remember one patient, who had a massive abdominal aortic aneurysm, it could have burst at any moment and killed him. He'd had lots of other surgery in the past, meaning his abdomen was full of scar tissue and had very bad lung disease, meaning he was at high-risk from the anaesthetic. Surgeon after surgeon refused to operate on this guy - they said he had a <50% chance of getting off the table. He was really begging, as he was still young (late 50s) and had kids.

The surgeon I was attached to accepted him for surgery. When they operated on this guy it took them 2 hours to get to his aorta through all the scar tissue (it normally takes 5 minutes). He arrested twice on the table. They brought him back twice. He made it off the table alive, he was off intensive care in 2 days, walking around the ward inside a week, and out of the hospital in 2 weeks. Phenomenal man. There is no blood test for the human spirit.

In your case, It sounds like you are having a strong response to the medication that you are on and that you don't have a resistant virus. It sounds like you have quickly climbed out of the danger area for OIs. Hopefully, as your immune system gets stronger, so will you - you'll start doing things, and thinking differently. Start having sex with your wife - the chances are if you had sex before you had HIV, you have already given her whatever HPV you had. Try and get hold of a 28-day supply of combivir, in case a condom breaks - or know of somewhere you can get some. Refuse to be any less than you were when you were negative. Give nothing away to this disease...

Serbia will change. It has to. It's had a crappy 20 years, but it's moving forwards now and is surrounded by EU countries. How can it not eventually join? With this will come a more open society, and one in which I hope you will be able to live and function without fear.

Anyway, I'm rambling now. I'm worried that this post might seem trite or preachy - if it does I'm sorry. I'm sure the problems you face must sometimes be totally overwhelming, and I don't think for a moment that they can be solved by one post. I guess the thing I really want you to take away from this is that I give a shit about you, and hope that you beat this thing and get your life back on track.

Yours,

Matt.

[Christine]

Disclosure is one of the hardest things to deal with. It is your right to not tell your family. When and if you tell them should be on your terms, and in your time. For eight years, the only person who knew I was positive was my husband. I felt I had to be stronger myself, before I told the rest of my family.

You and your family still have a future. It is going to be different now because of the hiv, but it is still there.

Give yourself time to adjust. It is hard in the beginning, but it can get better.

Christine