Just tested positive, and feeling numb

[Acesra]

Dear forum members,

I was just diagnosed about a few weeks ago. I have had many blood tests, to look at my CD4 and viral load. I just started the treatment.

Earlier this year I had a series of 'normal' health issues such as flu, eye infection, and diarrhea. Due to my own stupidity, I was not alerted. I thought I was stressed at work, didn't eat or rest well. But I decided to have a general annual health check, and I was informed that I was now positive. I do my annual health check every year, and last year I was negative.

I must say that I didn't understand the phrase "my whole world just collapses in front of my eyes" until that moment. I was and am still in shock, to the point I couldn't cry or feel anything. The first few days, I was thinking of ways to end my life. Thanks to my cowardice (fear of pain), I couldn't do it.

I live in Malaysia and am from a very conservative family/community. They could not accept my sexual orientation. At this point I'm not able to tell anyone about this news.

I read things up. All scientific information and news make sense logically. But emotionally and psychologically, I feel like my soul has been sucked from my body, and I am left with this a gigantic hole within me. I've lost hope, desire, joy, or any sense of happiness. I feel disgusted of myself. I get traumatized by my own blood. I feel like now I a a number, a bad statistic in the health system. I feel that I'm a disease walking, and my life is almost done. Different people have different strengths and capacities. But for me now, I feel I have nothing left in me.

I went online just to find out more information, and discovered this forum. I hope I got to learn more about to live this life with the virus.

Medical info after the first diagnosis:
- CD4 = 268
- Viral Load = 20,000 copies
- Treatment = efavirenz + Tenof-em (one each per day)
- Liver and kidney functions being monitored
- Side effects in the first two weeks included dizziness, stomachache, frequent bowel movement, intense dream, and sweating at night; Now these side effects have been reduced significantly. These days, I feel that my body heat is higher than usual, my appetite has not returned to normal, and I'm still tired.
- Doctor's comments: CD4 is rather low. Blood tests will be run again after 3 months of taking medication to see if CD4 goes up, viral load goes down, there is any drug resistance, and liver and kidneys functions properly.

Mental status:
- It's been the most difficult month/period in my entire life. I live day-by-day, go to sleep and wake up with this constant thought of having this status.
- It's still difficult to envision life in a long term. I feel hopeless, helpless, overwhelmed, and at times victimized. Perhaps it's because I have not told this to anyone that I know because I'm not at a right place now, let alone dealing with others' emotions or reactions.
- The suicidal thought comes and goes, but not as frequently as the first two weeks. I try to be more spiritual and mindful of my thoughts. I'll hang in there until the next chapter reveals (maybe after 3 months of taking meds).
- The mind is playing tricks of course. It's filled with fear, concerns, worries, anxiety, paranoid, and sadness. I wonder whether or not this will turn into depression at some stage.
- I try to read up, but information can be overwhelming or scary. Thus I try to manage taking in information, to keep a positive mind as much as possible.
- I cannot know from whom I got it and when exactly. I had some casual sexes at the beginning of this year. But I always protected myself. I have never done bareback. I never take drug. I don't blame anyone, but myself at times.
- The biggest concern for now is my health, now and in the future. I'm worried and afraid of illnesses/sicknesses.
- But reading other people's experience does help to not feel alone or isolated.

If you have any advice, please share. And thank you for reading my post.

Jay

[Jim Allen]

Hiya

Sorry to hear that you tested positive but glad to hear your on treatment and getting past the adjustment phase of that.

Being newly diagnosed can be pretty mind melting time for some and, it can take time to digest. Sounds like you have a few things going on as well such as not over reading for now, once you do start reading up on things you should be careful from what source you read stuff, as a lot of places are terrible outdated and, seem to hold onto outdated knowledge

I would not focus too much on when it happened of from who, i would say its pretty common not to know or not unusual at least and, to be honest it really does not matter at the end of the day. Let me put it like this to you, at some stage you simply had a viable exposure to HIV that met all the conditions needed for transmission,  done! Its the past now and not relevant anymore to your future and your future is the focus not the past.

- Doctor's comments: CD4 is rather low. Blood tests will be run again after 3 months of taking medication to see if CD4 goes up, viral load goes down, there is any drug resistance, and liver and kidneys functions properly.

CD4 is okay and will rise when its ready to do so for a large part. The goal of your treatment is simply to reduce the VL and keep it suppressed so the body is no longer fighting a loosing fight and your immune-system and body can focus on better things.

- It's been the most difficult month/period in my entire life. I live day-by-day, go to sleep and wake up with this constant thought of having this status.

I can only tell you that i'm at a stage that i no longer think about it, its so much so that I truly forget as strange as it sounds, that i am living with HIV even when answering posts here. It take everyone a different amount of time to digest this news but sooner or later you will no longer think about this daily when you wake up

- It's still difficult to envision life in a long term. I feel hopeless, helpless, overwhelmed, and at times victimized. Perhaps it's because I have not told this to anyone that I know because I'm not at a right place now, let alone dealing with others' emotions or reactions.

Well you really don't have to tell anyone. Unless you want to or feel it would help you. One of the issues with disclosure is once you told someone you can't control their reaction or what they do with that information. 

- The suicidal thought comes and goes, but not as frequently as the first two weeks. I try to be more spiritual and mindful of my thoughts. I'll hang in there until the next chapter reveals (maybe after 3 months of taking meds).

Okay well I'm really sorry to hear you're in so much pain and i wish you well.

Have you let you doctor know you feel like this? Also have you asked or spoken to anyone about peer support? It can be really helpful to talk to others who have gone through the same or similar experiences and i would definitely recommend looking around for any peer support networks.   

- The biggest concern for now is my health, now and in the future. I'm worried and afraid of illnesses/sicknesses.

Well in a few months time your VL should be suppressed and within several months your energy should come back to you. Thankfully with today's treatments suppressing HIV their is no reason why you can't live a long and healthy life. A lot of it all is about managing your health same as everyone else regardless of HIV so cutting out smoking, too much drinking / bad diets and being active etc etc

Take it easy and we are listing so free free to post and vent when you need to.

Jim

[Acesra]

Jim, thank you so much for spending time to reply my post. Your post really helps me to live and re-live. I read and re-read your post as a way to comfort myself, it helps me to feel that indeed I'm not alone, that I'm not isolated to suffer alone on this earth.

I must admit this is hard. The hardest thing in life to deal with. Only one test could forever changes my life. Now it's like re-learning how to live my life again, taking a baby step at a time. I have learned that the most important thing to sustain my life now is the acts of kindness from others and from myself, to myself.

I don't deny that I still have dark thoughts. And the deep sense of sadness remains there profoundly. But I'm hoping like what you said 'things will get better'. I'm looking forward to that day.

Thanks again Jim.

[Expat1]

Sorry for your recent diagnosis.  It gets better. Rethink about that test, before the test HIV was multiplying and damaging your immune system, without you knowing about it.
You took the test, found out you were positive...... and now you have the knowledge to do something about it.  And you are doing something about it.

The medicines you take are strong, those same medicines brought my viral load from 43000 to 163 in 17 days.   The first 3 month test showed that they are undetectable, and that has been the case for over 4 years.  No blips. 

I change my meds slightly and now take my 2 pills each morning with breakfast.  That is the only time I think about HIV. 
 
With this medicine, HIV has no power over me.  It does not affect my health.  I cannot pass this virus to someone else as long as I remain undetectable. 

[fabio]

I'm really sorry you feel this way. It's the first shock,it gets better in time. Glad to hear you started  treatment,I'm sure things will be better.
While reading your post,I felt so familiar with it. I contracted the virus this year,and as you,never had unprotected intercourse and,like you, I felt very suicidal when I learned about my diagnosis 7 months ago on top of having high grade dysplasia on my gi tract.
I want to assure you,everything will be ok. As long as you adhere to your medication and you keep a healthy lifestyle (proper diet,exercise,stop smoking etc.) You will,as all of us here,live a fulfilling and beautiful life. It's still overwhelming,I know,but you will get through this just like we all did the first time we knew.
As far as people knowing your status,I advise you to not tell anyone if you are not sure how they will take it,or if you don't have shelter or somewhere to stay. Do you have access to a lgbt center,or an hiv support group in your community and have you tried talking things out with them? If you don't you can always come here,hell you can pm me anytime and I'll answer you. I really want you to understand that you are not alone in this fight,that we stand together,even if we live far away,to beat this thing and come out of the fight stronger.
I'm certain your doctor will be pleased in some months with your results and you're gonna feel a lot more reassured once you hear the "undetectable ",I haven't heard it yet myself though,lol,since it's the 2nd time I've gone for my check up.
I hope you the very best,and keep us in check when your health gets better,and never forget we are always here for you,your not alone in this fight.
Much love,Fabio .

[CF80]

Acesra

I am sorry that you are feeling this way, I can relate. I was just diagnosed 2 weeks ago. I have some of the same feelings you have, I understand completely. I am experiencing the same range of emotions. I have a similar family situation. What I can say is we may not feel that it is going to be ok, (at least for me) but a friend of mine told me WE ARE GOING TO BE OK, she said that I may not be able to see the light, or feel like it, but it will all be ok, one day at a time.

My doctor told me that it is better to know then not to know. He said that if we do not know we cannot work towards a healthier life.

I found I was holding it all inside for the first 7 days, scared with feelings of loneliness, and a friend of mine pushed me into dinner. She held my hand and told me it did not matter we would get through it, and then I told her. It was my first time telling anyone. I felt like a small load of rocks were lifted. Now I am not saying it is all right, or that I don't have moments when I start to think and cry, but I know that I can call her. I have also told my best-friend, and for now that is probably as far as I will go, until I can accept it fully myself.  After reading about medication options, we are lucky for some better options today then in the past. I started Biktarvy yesterday, I just got my results of of my vial load, 140,000 and a CD4+ of 248.

We will get through this, and we will be ok. Just know there is someone else in the same situation and we are not alone. 

[Acesra]

Thank you Expat1, Fabio, and CF80  for spending the time to reply my post, and share your thoughts/stories with me. These stories help me to build a more positive outlook each day. I'm hoping that that soon, the feeling of "I'm okay" will come and remain with me much longer.

Fabio, I'm looking forward to hearing good news from you soon regarding the boosting of CD4 and reducing viral load. Please keep us posted. I hope to get to share good news in a couple of months.

CF80, I'm sorry to hear about the diagnosis. How are you doing? I'm sitting here perhaps on the opposite of the planet feeling for you and with you. I wish I have something to say to help you feel better. But as I'm not feeling much better myself. I just want you to know that there is another soul (and perhaps many many more) going through this with you right now.

May we all be okay.
Jay

[Tonny2]

       ojo.     Hello to all of you newly diagnosed fellows, we all know how difficult it is to get an HIV/aids dx, yes, everything looks dark, but it will get better, trust me, just hang in there, keep yourselves busy, be disciplined on taking your med/s and have a good attitude and if you can, think about the people who are no longer with us because they didn't have the opportunities and meds choices we have now, think, also, about the people who don't have accessories to treatment, I think, if you do this,you will see your dx differently, don't get me wrong, getting an HIV dx is horrible, but,you will see your dx from a different perspective, this will help you to learn how to live with the virus sooner, it is what it is, we can't change the past, but we can change the present, trying to be better human beings, makes some changes in our lives so, the past doesn't become your future. Do I make sense?...take it from someone who had been living with the virus for 23 years, even when I was told after my dx that I would live only two more years after my dx of aids, with only 20 cd4 copies and lived with aids five years after dx. There is always hope...you are not alone... hugs.            ojo

[virgo313]

Dear Acesra,

Apa Khabar? I am from M'sia too (KL). Welcome & glad you have found this forum.
This is where i found lots of comfort when i was first Dx.

A lot of positive 'notes" have been posted in here, so i am not going to add any, except that i would like to assure that you will be fine & live will be "very normal"

I presume that your test will be at Sg Buloh Hospital. Here is what to expect & also what i am "doing" for myself.

I presume that you have got 2 appointments in coming months.
1 is for blood test & another appointment a month later for a Dr appointment.
I would usually go there very early & try to get "a single digit number" so that i can get my blood drawn & leave hospital by 8.30 am.
I will do the same also when comes to Dr appointment, but Dr would only be available after they have done their rounds seeing "bedded patient" first.
Go early for both appointments so that you can leave early. Also easy to get parking.

Sg Buloh is quite far for me (40km), so i will advise the pharmacy there that i would like to collect my medicine at another location (hospital or clinic) near my house.
This means, i only travel to SG Buloh once every 6 months & the other 5 times i would collect at a clinic monthly only 2 km away from where I stay. (total 6 months supply)

After your Dr appointment in 4 months time, I think you will be on a twice visit a year (Blood test) & follow up by Dr appointment. Once your VL is undetectable after few visit, Dr will likely advise you that they will no longer be conducting CD4 counts.

For support group, there is the ever ready ppl from Pink Triangle.
http://ptfmalaysia.org/v2/
Since Dr have advise me that they will no longer conducting CD4 on me, & if i really want to know my CD4 counts, i can do it with Pink Triangle
http://ptfmalaysia.org/v2/hidden/anonymous-confidential-hiv-screening/

Hope these info helps. PM me anytime. Thanks 

[Acesra]

Thank you @Tonny2 and @Virgo313 for replying. Thank you for sharing your thoughts. I'm slightly better, but still hanging in there day be day..

Jay

[Loa111]

Hi Acesra,

Sorry to hear about your Dx.

I'm a new Dx too about 2 months ago, v low Cd4 and was quite sick for months before i found out the real reason! Shock!

Yes it is hard to digest our situation as newbies. Logically we all know to take our meds correctly, and get great inspiration n hope on here from our peers. However emotionally it's a bitter pill to swallow for sure.

The thought floats in the back of my mind a lot, and sometimes I feel like my Dx is a dark secret.

My VL dropped from 270,000 to 40 which cheered me up massively.

I'm started to feel better each week n am recovering from after effects of OIs. I'm beginning to notice what others on here told me already...take you meds, you will feel better soon, and life will be the same as if you did not have this condition. Guess what, it's true! I feel normal and do all the things I did before now.

So I decided the other week, "F**k It!" I'm going to take my meds, go to my check ups, live my life healthily, and F**K hiv, I don't care about it, so to hell with it!
That is a very liberating feeling!

Maybe you should think "F**k It!" too and you will feel better too

[Acesra]

Dear Loa111, thank you for your reply, and for sharing with me your story. I am sorry too that you had/have to face this. You are very strong, and I admire you highly. I hope soon I can reach that point of realization and move forward.

Today I must say that I almost reached that point. For some reason some fear and worries hit back. So I am still not well yet.

Thanks again for sharing

Acesra

[JosephP]

I read things up. All scientific information and news make sense logically.Read a lot, get informed, but be selective. There is a lot of out of date, antiquated information on the internet that can make your head spin
I've lost hope, desire, joy, or any sense of happiness. Time to recover your hope, desire, joy and happiness! In the words of my ID doctor "we are no dying of HIV but living with HIV
I feel disgusted of myself. I get traumatized by my own blood. I feel like now I a a number, a bad statistic in the health system. I feel that I'm a disease walking, and my life is almost done.These are very normal reactions to a positive diagnosis. I bet 99% of us here felt the same at one time or another
Different people have different strengths and capacities. But for me now, I feel I have nothing left in me. True. We all have different strengths and we all cope with our HIV in different ways, but you have EVERYTHING left in you...Find it!


Mental status:
- It's been the most difficult month/period in my entire life. I live day-by-day, go to sleep and wake up with this constant thought of having this status. And it is possibly the most difficult pat of the HIV! The emotions that come with a positive diagnosis are not always welcome.
- It's still difficult to envision life in a long term.Quite possible the most difficult part specially when you read about HIV and death rate. But that was before! Here in the forum we have great people and some of them are long term survivors that have paved the way for us and to whom we owe great deal. I feel hopeless, helpless, overwhelmed, and at times victimized. [i]It will get better, promise.[/i] Perhaps it's because I have not told this to anyone that I know because I'm not at a right place now, let alone dealing with others' emotions or reactions. I haven't disclosed either and, yes, sometimes I feel I lead a double life!

- I cannot know from whom I got it and when exactly. And it is really a mute point. A waste of energy and an unwinnable battle. We are here, we are hiv positive and we need to deal with that reality. Wasting energy in trying to identify the person or persons is a futile exercise. Concentrate in getting better, adjust to the new status and move on forward!!
- The biggest concern for now is my health, now and in the future. I'm worried and afraid of illnesses/sicknesses. Your life expectancy and illnesses/sickness are about the same for someone negative, providing your adherence to the meds and barring complications!
- But reading other people's experience does help to not feel alone or isolated. BINGO!

If you have any advice, please share. And thank you for reading my post.

Jay

[Acesra]

Thanks so much JosephP for spending the time to read my post and reply. Your words (similarly to others' messages in this forum) are very encouraging and meaningful.

I really appreciate it.