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Author Topic: Will my head ever deal with this?  (Read 4774 times)

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Offline villaboy1

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Will my head ever deal with this?
« on: February 25, 2007, 01:19:22 PM »
Ok where do I begin - infected in Serp/Oct 06 - converted in late Oct through to early Dec and new that I was positive. Just one of those things you know. Following a positive test result I did not really freak out, just content that I knew what it was. However the story since then has been one of few highs and too many lows.

I joined a great support group over here provided bt Terrence Higgins Trust and have phoned their helpline increasingly so. My despair is that I am not even moving half a step forward let alone 2 back.

I have never known anxiety like it, I have pancik attacks on the tube (subway!) go into these weird trances and have considered suicide on a recent scare.

I have 4 great friends who know but will never tell my family (too old!). I just feel like all my hopes, dreams and ambitions have gone.

I try and look on the positive side but all the horror stories just make me feel is it worth it.

Feel so lonely looking at all four walls even with support around me. Again I am not believing what people tell me that the meds will work and that you can expect a long "normal life span".

I am usually a upbeat kind of guy but this one has me rocking all over the place.

Does it get asier?

Will I come to terms with it?

It hurts so so much..


Offline dtwpuck

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Re: Will my head ever deal with this?
« Reply #1 on: February 25, 2007, 01:52:30 PM »

Does it get asier?
Will I come to terms with it?
It hurts so so much..

Villaboy, welcome to the forums. 
I will spare you the pretty psychobabble.  My sense is that you can see through that to the heart of the matter.
Yes, it does get easier, but the road to that place is very difficult.  I am not going to kid you.  Most of us who feel we have navigated to a place where we are not miserable have done so through the realization that it's all about our attitudes.  You say you are an upbeat guy.  There's a reason why that has worked for you in the past, and that particular personality trait will help you in the future.  While it doesn't look like there's a single silver lining in your cloud, I'd be willing to bet that you know already how to make the best of a bad situation.    AND, when you feel that you are out of options, it is important that you ask for help.  No one does this alone, my friend.

Remember to cry when you need to.  Remember to feel what you need to feel.  It's OK to be sad.  Being upbeat does not mean supressing the sad feelings.  It means, letting them be sad feelings and learning to find joy where there is joy.  It seems so simple, but I promise you this is a long process.  And, you will get there if you want to.

You feel despair.  You seem to want progress.  The fact is, that dealing with this is not something done alone.  When you read a horror story, you can also find inspiration.  Some of the most beautifully gifted transcribers of the emotion of human mortality reside on this website.  I encourage you to check out the blogs, especially Jonathon's and Lisa's.    Even after ten years living with this, I still find solace in understanding the thoughts of others, reading about their struggles, and reading about their insights. 

Regarding the meds.  They do work, but they are not without consequences.  There is a lot of literature on thi website about them and I encourage you to talk to the other members about their experiences.  On here you will find a very wide range of experience.  Keep asking questions.

I wish you the best, and remember, you really are not alone.  If you don't find comfort in your friends, go seeking others with hiv, who understand very well what you are going through.    Big hugs, life is worth it... and so are you.  Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline water duck

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Re: Will my head ever deal with this?
« Reply #2 on: February 25, 2007, 04:23:35 PM »
After reading the wise words of scott , there is nothing much to add except to say that when you reached bottom, the only way is UP.

villaboy, give it time, be kind to yourself and do not forget to love yourself !!
NOBODY is going to do that for you. stick around; let the caring people around here support and lift you up, it is not a sin to ask for help or just simply say  'I AM HURTING'
strange , it may be , being hurt does make us strong !!

welcome and all the best.

Siang

Offline villaboy1

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Re: Will my head ever deal with this?
« Reply #3 on: February 26, 2007, 09:09:54 AM »
Guys

Many thanks for this, it helps that there is support out there and I guess I am pleased that I have found out sooner rather than later.

However, I literally crawl up the wall whenever I cough, sneeze or feel not quite with it.

I have never felt anxiety like it, it sweeps through me like waves crashing in a storm.

I feel as if i have lost who I am, just want to hide under the duvet cover and never wake up.

I guess that I want someone to say it will all be ok but i know that they can't as this really is a individual illness.

I do take inspiration from individuals who are carrying on with life and several friends are at a point where they see their HIV status as no big deal..

I am scared of today, scared of tomorow and fearful of any day after, wondering whats going to hit me next.

In a strange way the happiest I have been was when I was in hospital a couple of times as there was life around me and I knew I was in capable hands there should anything go wrong.

I know this should not be the case but I look at things I purchased when i was negative, look at people and think you are so fortunate not to be positive, think of events and situations when I was negaive and feel that I can never have those feelings again.

I call helplines time and time again just to hear them say you can expect a normal life expectancy, I read articles saying the same just to life me up
Sorry to be so down about this but its hell but I know that I am not the only one feeling this..

Lx

Offline rick21007

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Re: Will my head ever deal with this?
« Reply #4 on: February 26, 2007, 03:36:25 PM »
Hey VillaBoy!  One thing we all get to learn is to have courage and there can be no courage until we walk through our fear!  And that is where you are now--walking through your fear.  You will come through this and out the other side.

I was diagnosed in December.  I've got chronic hepB too.  While my CD4 counts are climbing, so are my VLs, so I dont know yet where I am going to land---but hey, someone once told me I am a guy who always lands on his feet and that is exactly what I will do---ah! but not alone, my friend.  None of us can do it alone.

The truth is I feel perfectly healthy now-- I go to work, eat right, work out every day and have a man in my life who loves me like there is no tomorrow.  This makes the days pretty full.  I have hiv but I have a wonderful life.  It was not always this way for me, even before I had hiv.

Take care,  Rick








Offline Andy Velez

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Re: Will my head ever deal with this?
« Reply #5 on: February 26, 2007, 06:17:00 PM »
Hi Villa,

A definite yes to that question. YES, you will learn to deal with this.
 
But, HIV is definitely not something to do in isolation so I am glad you have found your way to our site. 

It takes time to get accustomed to having it in your life and to realize that as important as it is, it is not and will not be all that your life is about. The feelings you have been having are very understandable and shared by many who will read what you've written.

What's essential is that you have a good doctor with whom you can develop a working partnership to keep you healthy. Gradually you'll learn whatever you need to know to stay well. You're always welcome here to discuss anything that's on your mind and to ask questions.

You'll find people here to be both informed and responsive. The more you let them get to know by talking about yourself and becoming interested in them, the richer your experience will be here. You've made a good start so welcome, and keep coming back.

Cheers, 
« Last Edit: February 26, 2007, 06:18:54 PM by Andy Velez »
Andy Velez

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Will my head ever deal with this?
« Reply #6 on: February 26, 2007, 10:00:38 PM »
Hi villaboy...
Sadly, your anxiety is natural.  You fear every sniffle.  Each sneeze.  Every itch.    A little vigilance is good.  A lot will drive you crazy.   I can't tell you how to STOP worrying.  I can tell you that it's OK to talk to a doctor about your worries, and that after the first few times, your worry will proabably abate.  Docs are used to dealing with the anxieties of newly diagnosed people, and it's really fine to make them earn their buck.

Yes, indeed it is an individual illness.  Heck... it's an individual life.  Statistically speaking you probably will have a long life.  But, I bet this feels like politically correct fluff to you.  It certainly does to me.  I hated being told that I could live a long time, that this was a good time to be diagnosed, that the new drugs show a lot of promise, etc.  I hated it.  All the well meaning counselors telling me what I was feeling was normal didn't do me any favors.  I wanted to be unhappy.  It was comforting for me to be expect and fear the worst, to be the worst, because the disappointment of any unrealized hope would have been more than I could bear.

Then, nothing happened.  For a very long time.  Depression set in.  I took my meds.  Fought side effects.  Refused to change.  Depression got worse.  Still, nothing happened.

Why am I telling you this?  Because it is my hope that you will see what I saw earlier than I did. 

I will die someday.  So will you.  Maybe I will die a long, slow tortuous illness.  Maybe I will die of a stroke.  I can't know.  But I can live every day as best as I can.  I can love.  I can help others.  I can help myself.  I can still devote myself to the things I care about and the people I love.  Carpe diem is not a cliche... it is the dictum that keeps us sane.

It is OK to feel sad, to feel despair, to feel like you need to feel.  I am glad you are asking for help, or at least writing down your thoughts.  We are here to help.

Reaching out.... Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline villaboy1

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Re: Will my head ever deal with this?
« Reply #7 on: February 27, 2007, 04:29:00 AM »
Dear Rick, Andy & Scott

Thanks again for your posts - they are so kiind and very much appreciated.

I have now sought counselling and Scott I can totally emulate with your comments about wanting to expect the worst so that you can prepare yourself for it. I guess that this is something I will have to flip 180 and see the best side of things.

I guess we cant predict the future and even if we could it would be lies.

Thanks guys

be good

Love L

Offline budndallastx

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Re: Will my head ever deal with this?
« Reply #8 on: February 27, 2007, 01:14:28 PM »
Man is a very adaptable creature.  We have obstacles thrown in our path each and every day.  We adjust since it's part of what makes us human !!  I know it's really stressful right now but HIV treatment has evolved incredibly over the years as we learn about this virus. 

The key is to be open about your feelings and talk to people about it.  This forum is a great place to read and learn from others.  Ask questions, voice your concerns/worries.

Hugs,
Tom
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline dtwpuck

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Re: Will my head ever deal with this?
« Reply #9 on: February 28, 2007, 07:03:51 PM »
Dear Rick, Andy & Scott

Thanks again for your posts - they are so kiind and very much appreciated.

I have now sought counselling and Scott I can totally emulate with your comments about wanting to expect the worst so that you can prepare yourself for it. I guess that this is something I will have to flip 180 and see the best side of things.

I guess we cant predict the future and even if we could it would be lies.

Thanks guys

be good

Love L

Best of luck to you, and let us know how it goes. 
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline FiercenBed

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Re: Will my head ever deal with this?
« Reply #10 on: March 04, 2007, 11:58:46 AM »
dude.....i had the exact same proplem w/ anxiety attacks. u described them to a 'T' and they were a bitch! never had anything happen like that before. they usually 'struck' <w/out any warning> in the early evening.

i hate to b a drug pusher....specially w/ all the medication going on round here, but diazapam <valium> solved my problem. id take 1 @ the start and it would immediatly settle me down. after a couple of months i got over it.

good luck

Offline villaboy1

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Re: Will my head ever deal with this?
« Reply #11 on: March 04, 2007, 02:06:01 PM »
Thanks for this..I now have progressed to 2 good days per week (to the extent I even shopped for clothes in Covent Garden) but 5 bad. Acupuncture helping but sleeping a not great.. Would love to have just one good nights sleep feeling refreshed!


Offline tigger2376

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  • too bad to die youngish!
Re: Will my head ever deal with this?
« Reply #12 on: March 04, 2007, 06:36:28 PM »
Shaitsu works for me, and you can go to the globe and get it for free on NHS, as well as other alternative therapies. There may be a waiting list,but ask your doc, about the availability in your area
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Jake72

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Re: Will my head ever deal with this?
« Reply #13 on: April 03, 2007, 07:39:18 PM »
Ok where do I begin - infected in Serp/Oct 06 - converted in late Oct through to early Dec and new that I was positive. Just one of those things you know. Following a positive test result I did not really freak out, just content that I knew what it was. However the story since then has been one of few highs and too many lows.

I joined a great support group over here provided bt Terrence Higgins Trust and have phoned their helpline increasingly so. My despair is that I am not even moving half a step forward let alone 2 back.

I have never known anxiety like it, I have pancik attacks on the tube (subway!) go into these weird trances and have considered suicide on a recent scare.

I have 4 great friends who know but will never tell my family (too old!). I just feel like all my hopes, dreams and ambitions have gone.

I try and look on the positive side but all the horror stories just make me feel is it worth it.

Feel so lonely looking at all four walls even with support around me. Again I am not believing what people tell me that the meds will work and that you can expect a long "normal life span".

I am usually a upbeat kind of guy but this one has me rocking all over the place.

Does it get asier?

Will I come to terms with it?

It hurts so so much..



Wow, I can identify with this thread.   I was diagnosed in 1999, and I had a terrible problem with anxiety and panic attacks that made me close to agoraphobic for awhile.  Where do I start with this one?

One poster mentioned looking at articles purchased when negative.  I used to do that, almost as if I saw myself as two different people, the 'normal' negative guy and the post-diagnosis 'damaged goods'.  Rationally speaking, this is, well, irrational.  When I had, say, chicken pox or mononucleosis, I didn't make such a cruel distinction in self-worth prior to and post diagnosis.   It's just  a virus, and everyone has viruses in his/her body.  What makes HIV different is the stigma, that horrid media stigma that has made HIV-positive folks (with few exceptions, such as Magic Johnson) objects of fear, scorn, and pity.  HIV is one of the most feared and stigmatized illnesses of our time, and when we get an HIV diagnosis, the virus goes from being in other people to being in our bodies.  When I was diagnosed, at times I felt (again irrationally) almost like the victim of a vampire who had, in turn, become a vampire.  From a social point of view, there is a pre-diagnosis self and a post-diagnosis self.   That's why so many of us are hesitant or afraid to tell even our closest friends and family members.  Being surrounded by the HIV-negative majority of society, it could give us anxiety or at least some level of discomfort because there are questions like 'why me and not them?'  'what would they say if they knew...?'  This becomes even more of a complex issue in physical relationships, especially with the legal requirement to disclose our status in sexual relationships.  So we have to be very strong and have a solid sense of self when dealing with this stigma, and it can really require a lot from us, something that's particularly difficult if we've had a history of some insecurity or low self-esteem.

Another issue here is that a lot of us grew up and/or were very media-aware in the 1980s/early 1990s.  We were exposed to media reports about HIV/AIDS that made it look like the worst possible thing  that could ever happen to anyone.  We remember the terrifying news shows and melodramatic films.  Realizing that this virus from those news clips/films is the same virus  that's in our blood can be extremely scary. Of course, treatments are completely different now, and comparing HIV in 2007 to HIV in 1987 or 1991 is unfounded (back then, an undetectable viral load and immune reconstruction were mere pipe dreams).  If HIV treatment had been the way it is now since 1981, our connotations, both conscious and subconscious, of the virus would have been completely different.  Yet the images from back then have been engraved in our minds, and it is difficult to shake them, especially when we've been through something as overwhelming as a diagnosis.  So that can cause anxiety-as we live our lives with the 'dreaded HIV' in our bodies, we worry what it could possibly be doing to us.  When I was first diagnosed, I felt as if there were a sniper aiming at me at all times, just waiting for the time to strike (yes, I know this post is full of odd metaphors).  There's a sense that we're no longer in control, and that can be very difficult, to say the least.

Another issue that can be anxiety-provoking is the issue of closure.  We're taught from a young age to look at problems as having a cause, a solution, and closure.  With HIV, so far, there isn't closure.  We can do well, extremely well on medications, and yet we still have to take the pills and get the bloodwork done.  An HIV diagnosis is tough, and we have these daily reminders of it.  Like most of us,  I'm hoping that there is closure someday, the chance to get past the pills and bloodwork.  But since that isn't going to happen tomorrow, we have to go back to our lives and goals in spite of HIV.  That also requires strength and perspective, something that, again, can be temporarily warped by a diagnosis.     

I think time does help us to deal with things.  For most of us, treatment will work pretty well.  After a series of labs with decent results, we begin to think 'hey, I can handle this with the meds, and if for some reason something goes awry, they can switch something.'  This isn't to say that it's a walk in the park, but  there are a variety of treatment options that can, in most cases, keep the virus under control.   And the pipeline is full of some interesting research... 

And with time, we pursue goals.  We complete goals.  We establish more goals.  We get stronger (ideally).   Many of us date, marry, have children, enjoy very fulfilling interpersonal relationships.   

I'm sorry that this has been so long-winded, but I wanted to say that I've been through this and that, in my experience, it doesn't quite go back to the way it was pre-diagnosis, but it does get a lot better and  that you will likely feel more comfortable, at ease in your skin, and less anxious.   


Offline otherplaces

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Re: Will my head ever deal with this?
« Reply #14 on: April 04, 2007, 12:14:47 AM »
L,

Perhaps what I'm going to offer is an over-simplistic analogy, but this is what I found in dealing with my diagnosis.  It's kind of like lifting weights.  Af first it is very heavy because you've never lifted it before, and it exhausts you and makes you feel like you're at your wits end.  But ever so slowly you become stronger.  You're lifting the same weight but you're a stronger person and you can deal with it so much easier.  It starts with having one good day a week.  Eventually there will be two a week.  And at some point those bad days can be rough but you're a mental hulk and you can deal with it.  I remember the word HIV just flying through my head over and over and over again.  It was drowning me.  I do think about it less these days, but that's not to say I don't think about it often every day a year and a half after diagnosis.  But having bench pressed HIV for a year and a half it's just not as hard.  It's alot of weight but I look at it and I'll be damned if I don't just lift it....grrrrugh!!  :o

When things are bad there truly is always tomorrow.  We move forward.

You will get there my friend!

Much love,
brian

Offline tigger2376

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Re: Will my head ever deal with this?
« Reply #15 on: April 04, 2007, 07:01:19 PM »
Simple answer is YES, you will deal with it
No choice
sorry to seem harsh but you have options
wallow (thats ok for a while)
Get angry (thats healthy)
Cry (ditto)
learn, ask and take info on board
ASK questions
I don't think anyone really accepts whats happened, but we learn to deal with it, in whatever way we can
Please don't think I'm criticising
It may take a while

xxxxxxxxxxxx
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Andrean

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Re: Will my head ever deal with this?
« Reply #16 on: April 05, 2007, 01:14:00 PM »
The feelings you are going through are identical to mine, some 15 years ago now. I was diagnosed back in '94 with HIV and Hep B. I have never had a real bad day yet, and that is without meds, up until 2 years ago. I remain active, happy and don't even think about my status from one month to the next. You learn just to get on with it, and some how, you find to deal with those moments you have a scare, like a cold or maybe feeling a bit under the weather. I also believe it was the single best thing that happened in my life, as it made me grow up, reassess my life, made me more understanding, caring, tolerent, etc, etc. My very optimistic outlook in life, I have no doubt, has helped as much as the drugs I am now on. I am as fit as a fiddle, have a job, a HIV negative boyfriend, who loves me to bits too. Life worked out just great for me, and continues to do so. Being HIV positive is not so much illness, more of a way of life, and believe me when I say, in the coming months and years, you will deal with it and get back on track to living your life buddy. I like millions of others infected have...and so will you!
Be safe, be happy, be positive in mind - Andrean x

Offline Andrean

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Re: Will my head ever deal with this?
« Reply #17 on: April 05, 2007, 04:44:45 PM »
Villa, thanks for you personal reply, and I am delighted to hear your head is now from under that duvet, lol! I really identified with your story, and it took me back to the days I too was terrified, kinda lonely and totally freaked out at having to tell my parents. I felt so guilty in feelings of letting them down, especially as I had been careless with partners and even felt I deserved to have got infected.
I now realise of course that was initial lack of knowledge, understanding the disease and fear.
It took hell of a lot of guts to spill the beans, as they say here in London, but I told my mom, and although clearly upset, she was fantastic about it all - even though back in '94, we never had the fantastic treatments we have today. Despite this, and I know it sounds kinda weird, but we could actually laugh about stuff that would seem dark and morbid to others. We even talked about my death, and I said I would send her a message if I could from the other side, lol! Dark, confusing, scarey days, but my mom was a real rock to me. We learnt much together, and I will never forget what a difference she made to my life - in its darkest hour.
Of course, having HIV now is an entirely different set of circumstances, from 1994. I expect to live a long and healthy life, thanks to my terrific medication ( Kaletra & Sustiva: CD4 889, VL Negligible and a normal LFT.) After more than 15 years, not a bad set of results, huh? And no, I don't go the way of being a health freak, taking loads of alternative therapy. Infact, I don't even exercises, lol! I enjoy the odd drink, the occasional smoke, travel, follow my dreams - in a nutshell, lead a totally normal life. All I have to do is remember to take a few tablets each day. You get used to that very quickly. I don't have any side effects, so all in all, I have done very well indeed, like so many other people in my situation.
Villa, you can still live out your dreams - that car, nice house, etc, etc, as you  have everything and more to live for. As I said before, this is not so much an illness, but a way of life, and I treat my "condition" like I have diabetes. I control it by positive thinking, it never controls me. Best wishes pal, and I will keep in touch.
Go follow that dream!      - Andrean x
Be safe, be happy, be positive in mind - Andrean x

Offline Andrean

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Re: Will my head ever deal with this?
« Reply #18 on: April 05, 2007, 08:02:26 PM »
Correction to the above! I take Kaletra and Truvada, (not Kaletra and Sustiva, lol!)
Be safe, be happy, be positive in mind - Andrean x

 


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