Hiv/Aids Time Management, to much?

[Life]

How much time do you invest in your hiv/aids??

I have been thinking about this of late.   How much time do you invest in your hiv/aids disease?  When I say that, I mean putting it simply, how much time out of your day is used productively without hiv/aids even popping up in your brain?  Or, is it this nagging feeling in the back of your mind, always pushing, always prodding its way back out into the foremost part of your thinking…   It has been two years this month, and it is still very much a part of my daily routine.   I would have to say that the investigative part and acceptance peice about hiv has come down a notch or two.  And the worry, well, that has also diminished considerably.   More of a, well I have researched that to infinitem, now let it be and see how it works out…  On a scale of 1 to 10, where would you be as 10, occupies your entire existence, and 1 being negligible.   We all have to live with this..  But do I have to give it so much time?  All of us had lives before hiv/aids, how much of this have you gotten back to spend in the “old world of being a normal guy/gal ?” Or is this just something that we have to permanently attach to the mirror in the bathroon? (sticky note "Eric do not forget your hiv today!") 

Signed

Eric
(who really is grateful to have a portion of his day back)

edited to try and be clearer...

[Matty the Damned]

Or is this just something that we have to permanently attach the mirror in the bathroom….

Huh?

MtD

[Basquo]

Eric, years ago it was probably 7 or 8, but even with my health issues that may or may not be related to HIV, I'd have to say it's 2 to 3 and some days even 1 now.  Mostly because finding this forum made me realise that I'm not alone, and even at work, if I get a little panic attack, I can log on here and visit and catch up with friends. Sometimes I log on just out of habit and it takes me a bit to remember why I came here in the first place. And it also serves as a reality check, to be reminded that dealing with this is a full-time 10 for a lot of people.  Not a day goes by that I don't remember that I'm HIV positive, but the friends I've made here have made me feel normal again, and not isolated.

 
Creighton

[Life]

Sorry Matty,  I put notes on my bathroom mirror to remind me of things I need to do from time to time..


Creighton,  I would be greatful to be say at a 5 at this stage but I am not.   Learning the triggers and disarming them before they go off is a bitch...

Eric

[GSOgymrat]

Years ago I thought about HIV all the time. Then when I realized I wasn't going to die any time soon my mind got bored with it and it faded. Next I got lipoatrophy and every time I looked in the mirror I was reminded of it because I looked sick. Then I got my face fixed and now honestly what keeps me thinking about HIV is this forum. I know if I stopped logging on here I probably would forget about it other than when my calendar reminds me it's time for labs again or when I get some random illness.  (BTW got labs yesterday VL<50, CD4=826, CD4%=26) I take pills once a day but that has become such a routine that I don't associate it with HIV-- it's on the morning regimen between breakfast and brushing teeth.

I've considered giving up reading this forum so I can just forget about HIV. But thinking about HIV doesn't worry me anymore. I came for the HIV info and am staying because I've become interested in the lives of the people who participate in this forum.

[Moffie65]

Good night, I'll answer in the morning.   

[tsw923]

Interesting question Eric. 

I've gotta say that when I got diagnosed last year, it was probably at a 9 or 10 during the day and off the scale at night when I was at home by myself and had time to think.  Now I have to say its probably around a 3 or 4 with spikes when I have to get labs, get test results, or when I have something new thrown at me like having my medical plan force me to get my meds from their mail order pharmacy that specializes in HIV and organ transplant care drugs because of the cost.  Although I try not to let it get to me, it is always kinda lurking in the back of my mind.  My goal is to get it down to a 1 or 2 on a daily basis. 

I do agree with GSO that sometimes reading the posts here make me think about it more.  But I need to come here because this is my therapy; connecting with other folks helps me know I'm not the only one dealing with this virus. 

Ty

[Matty the Damned]

Sorry Matty,  I put notes on my bathroom mirror to remind me of things I need to do from time to time..

Ah. Actually that's not a bad idea. Cheers Esme for clearing that up.

MtD

[milker]

Hmmm...

the knowledge and change in my social life i'm getting from hiv makes it productive, actually. It hasn't hindered my life yet. Except that I'd like to be 100% out with my family and not telling them is something that haunts me.

Milker.

[StrongGuy]

I think about it at certain times - sometimes when I take my meds (not always cause it's so part of the routine) and when I come here and check out the posts. I guess thinking about it is just the reality and is what it is -- but it's not something I obsess about or turn into a cascade of pessimistic thoughts. It's just a part of me but it doesn't define me.

[BT65]

I used to think about it nearly 100% of the time, in the "earlier" years, when I was going to funerals on a regular basis, and getting horrible infections and problems that would take eons to clear up.  Now, it's probably a 4 or 5 most days. 

[Dachshund]

HIV/AIDS Time Management: Conference Room B 2:30 PM

Sounds like a bad inservice topic they force middle management at WalMart to attend.

[Dragonette]

I thought about it 24/7 in the beginning (less than 2 years ago), then I relaxed some and got on with my life, thinking about it mostly in the community context like this forum, meeting poz people etc. But now I am becoming resistent to my meds and it has come back to haunt me, big time. I'm much more scared of the disease now when I was before, when I didn't even contemplate how dangerous walking around with a T count under a 100 was and thought (and was told!) that adhereing to the drugs would fix it in no time and keep it that way. Only thru stories here I realized it isn't so but it still didn't prepare me for becoming resistent so soon. So to answer your question, I would have said 50-40% of the time last week, but now I don't "think about" HIV, I am HIV - not thinking, just constantly dreading while thinking about other things I need to attend to like work and even this forum (yes, this forum can actually be a distraction from HIV because talking about it is nowhere near as bad as it actually is).

[next2u]

geesh, im probably an 8 or 9 about now. i'm scheduled for my first labs today so it's definitely on my mind. i am also scheduled to receive the results from my follow up hiv test today (aka the deal sealer). i woke up in the middle of the night wondering why again, being pissed, then thinking of the difficulties ahead. adjustment is a bitch and everything seems to be tainted with my new found reality. when i'm at school or work  it's not so bad. but when i meet a new person, or see someone attractive, it's like it's happening all over. i find a way to remind myself at every possible waking moment.

i guess it's cause it's so new and i haven't come to terms with it completely yet. yeah, i keep looking at all the people around me and there's a new thought that keeps going through my head - i am different. not that i'm a freak, but i am poz and they are neg. statistically speaking, i believe it's somewhere around 1 in every 270 people in america are possibly hiv positive.

so i'm not coming away from this thread all super optimistic, but it's how i feel. i woke up (again) in the middle of the night because i started thinking/dreaming about it. hopefully in a year or so it'll be a 4 or 5, but right now it's definitely a consuming process - something my homeopathic doctor warned me about (i have 4 docs in the mix, im working my way down to 2).

to end this on a good note, i don't feel like i am walking around with a large I HAVE HIV banner on my forehead anymore. so my hiv/aids time management (definitely sounds like a class in middle america business mgmt) has been extremely poor and taxing. ill be reading this thread for advice.

[leatherman]

After 15 yrs of dealing with HIV, each morning, as I take my first meds, I'm between 9 and 10.

IF I haven't barfed within the next two hours, it drops down to 1 if I'm not having any other health problems that day; otherwise it's probably a 5.

Just before dinner, and the second dose of meds each day, it climbs back to 10. Most days within an hour (if no sickness ensues), it's back down to 1.

Since I've had a lot of bad times through the yrs, any day with a doctor visit is a 12! If my results aren't so good, the rest of the day will be an 8. If the results are good (like they were yesterday when my VL dropped back down ), it's probably a 2* (the asterik being because I'm thinking about the HIV as I tell my friends the good news).

The honest truth for me is that no day is ever a zero, nor do I expect it to be as this is a serious disease that I have. Twice a day, I have meds to take; and many days I have to deal with some effect of having this illness.

But I don't think that people with diabetes, cancer, etc. ever have a truly "zero" day either, so I don't think there's anything special about how I think of my HIV throughout the day. It's just part of my reality.

[Moffie65]

Eric,

After 24 years, I simply don't think about it as it applies to me on any regular basis.  Taking the meds has now become more automatic, and when taking them I just think about how much food is left on the plate.  I take my meds in the middle of my meal, as my doctor told me that seemingly, taking them with food in your stomach and then cover them with more food gives us less physical reactions to the toxicity and the trouble they cause.

Of course in my work I think about it alot, but not in a personal sense.  When I am cooking, I now automatically wash my hands and food about 10 to 12 times, but that has now also become a habit and I really don't think about it.  My kitchen is set up for not cross contaminating my food. 

So, like Leatherman, I really think about it when it is kicking my ass, but as far as it impacts my time management; I seldom plan to leave the house before my first or second BM or no sooner than 9am.  Other than that, the rest is meerely a crap shoot.  Overall, about a 1 or 2

Love,

Love,

[Miss Philicia]

I don't think the issue should be about "Do I think about HIV" but rather "When I think about HIV is a positive type of think or a negative type"

There's a huge difference between being negatively obsessive about an issue and being constructive.

[mjmel]

Management Attention Scale = 4
I faithfully do the quarterly, routine doctors appointments, the quarterly labs. It's not changed a bit from a 4 rating  since 1999 (started meds) cause I recognize I'm doing what I can do for my individual experience.

 
Mike

[northernguy]

I'd say I'm about a 7.  It flashes in at me when I least expect it. Yesterday I was in a seminar and it crashed into my mind, saying "you're the only one here with HIV, you're different".  And when I wake up in the middle of the night, choking on acid reflux that I did not have before I was infected I'm reminded (no matter what the docs say I refuse to believe its a coincidence the reflux appeared at the same time asHIV).

[vokz]

I don't think the issue should be about "Do I think about HIV" but rather "When I think about HIV is a positive type of think or a negative type"

There's a huge difference between being negatively obsessive about an issue and being constructive.

[allopathicholistic]

Or, is it this nagging feeling in the back of your mind, always pushing, always prodding its way back out into the foremost part of your thinking

Yes, that. HIV is like my ultimate enemy. When I worked on Wall Street half my time was spent working,the other half slaying office vipers (enemies). Even the worst viper couldn't hold a candle to HIV, and HIV is the only enemy that can claim any type of victory over me in the work world. So now I'm almost obsessed with revenge it seems. Thus, AIDSmeds is my Pentagon, CIA, etc. Members have mentioned that I can try a less stressful industry but that to me is tantamount to accepting defeat. Y'know, that HIV succeeded in taking away what no human could.

On a scale of 1 to 10, where would you be as 10, occupies your entire existence, and 1 being negligible.   

8 or 9

[vokz]

I don't think the issue should be about "Do I think about HIV" but rather "When I think about HIV is a positive type of think or a negative type"

There's a huge difference between being negatively obsessive about an issue and being constructive.

I could not agree more if you called me Helga, made me wear lederhosen and promised to slap me hard.

The big things I can deal with in my stride – because mentally I have already prepared for most of them – but when there is an intrusion that I resent, or which causes negative thoughts, it is usually silly little things like the lab screwing up my bloods and me having to arrange to pay another visit to the clinic .. or a well-meaning friend who filters trivial shit about me through the knowledge that you are HIV-positive .. or when someone asks me if I am OK, and rather than take my assurances that I am, gives me that searching quizzical look that says “are you telling me the truth”.

On a daily basis I would have to say that the intrusion factor rates as a ‘1’- with silly little niggles momentarily pushing it up to a ‘2’ or a ‘3’, once or twice in an average week.

The only real HIV related issue that ever gets me really down is the fact that I lie to my best friend about how I got infected – because I know it would totally destroy him if he knew that it was him that had infected me .. whereas, perverted as it sounds, I am actually secretly quite comforted by the fact that it was him, rather than some random nobody .. and wishing I knew how to tell him that, so I didn’t need to be constantly on my guard maintaining the lie (and yeah, I know that is selfish).

[pozattitude]

I'm not sure how to answer this.
I think I would have to rate my self between a 5 and a 7, but I don't see it in a negative way.
Like it's been said before, I think about HIV as an illness everydayfirst thing in the morning when I take my first pill of the day and like Leatherman "If I haven't barfed within the next two hours, it drops down to 1 if I'm not having any other health problems that day; otherwise it's probably a 5".
To largest part of the day I spend thinking about HIV is in a different light..it relates to the volunteer work I do with my local GLBT center, the local AIDS organizations here in the San Francisco Bay, the fund raising events I participate and volunteer such as AIDS Walk, AIDS LifeCycle, AMFAR, ACT UP, etc...  but this is the kind of things I did before I became HIV POZ so I don't think of it as a "negative" reminder of my HIV.

Rich

[Miss Philicia]

HIV... it's a lifestyle

[pozattitude]

HIV... it's a lifestyle

i forgot about that one Philly, it's a lifestyle...lol
and in my case it's a big ass tattoo on my back as well 

Rich
(who doesn't consider popping pill and barfing a lifestyle)

[leatherman]

I take my meds in the middle of my meal, as my doctor told me that seemingly, taking them with food in your stomach and then cover them with more food gives us less physical reactions to the toxicity and the trouble they cause.

Wish my doctor had told me that at first. I learned the hard way. LOL I shovel in some food, pop that Norvir, and then cover it up fast with the rest of my dinner. If I don't, I swear I can tell you exactly when that gel cap bursts, and that it won't be long till I'm hanging over the toliet again. (where is a "sick" emoticon? I've got one I use, unfortuntately, a lot on my personal blog.  ) Those are definite "10" moments. 
 

So, like Leatherman, I really think about it when it is kicking my ass, but as far as it impacts my time management; I seldom plan to leave the house before my first or second BM or no sooner than 9am.  Other than that, the rest is meerely a crap shoot.  Overall, about a 1 or 2

Let me do the math.
2 times a day I reach a 10
6 hrs a day are a 0
(I can count my sleeping hrs as "0"s since I stopped Sustiva and those nightmares  ).
the other 18 hrs in the day are a 1

then my daily count of 38 / 24 hrs per day, makes me actually average just over 1.6. WooHoo! I'm actually less bothered by it than I thought, even though I do think about it every day. Cool. 

mikie
(who had another puke-y morning; but was out doing his daily two mile bike ride a few hrs later)

[buca45]

In the first few years (16 years poz now) it was on my mind 24/7 and I was constantly preparing for death....i wasnt thinking of the time between being healthy and getting sick, I went straight to the big problem, who will be burying me.
After losing a few family members to causes other than AIDS, I realized that I was going to have to put those boxing gloves on and put up a fight.
Il learned all there was to learn, did all i could to care for myself, invested every cent of my money in long term money making ventures knowing I would be around to enjoy the benefits of them, and did other things to let myself know i was going to be around for a long time.
It seemed the more I concentrated on the future and how I was going to live a good life and not die an ugly death, the less time I thought about it.
Of course now the only time I waste energy thinking about HIV/AIDS is when I take out my pill box or in the morning when I lie in bed watching CNN in a painful ache until the vicodin kicks in.
Over the past year I have let a few negative thoughts enter my head concerning physical appearance and on occasion those thoughts spread into other smaller "problems", but I am learning to overcome these negative issues so I can get back to enjoying my life and all that I have been given.

[Life]

Thank you for all your thoughts and feelings.   I am very greatful to have you and this place....  I really do not know what to say other than thank you for extending a hand when I have needed it... 

Hugs,

Eric

[StrongGuy]

Oh i didn't realize we had a scale too. Put me down as a solid 3.

[komnaes]

The only real HIV related issue that ever gets me really down is the fact that I lie to my best friend about how I got infected – because I know it would totally destroy him if he knew that it was him that had infected me .. whereas, perverted as it sounds, I am actually secretly quite comforted by the fact that it was him, rather than some random nobody .. and wishing I knew how to tell him that, so I didn’t need to be constantly on my guard maintaining the lie (and yeah, I know that is selfish).

Hmmmm.. it sounds like there's much more of a story there Votz

Maybe I am like you - even before my diagnosis, nothing irritated me than those intrusions. Instead of just giving my murderous look to stupid people acting stupidly in front of me in airport check-in counters, I found myself shouting at someone, "Yes, you ONLY have a green mileage card, it WON'T give you priority checking so just bugger off". But of course what I wanted to say was, "Yes, I'm HIV and I can die anytime now, so STOP wasting my time." Not good for the CD4 count.

I figure though if I don't control myself a heart attack will send me a one way ticket sooner than AIDS.

Shaun

[vokz]

Hmmmm.. it sounds like there's much more of a story there Votz

Not really. He has just had an appallingly bad time of it with HIV, Hep C, depression and finding drugs that he could live with  - and that would inevitably cloud his perceptions of what he felt he had ‘inflicted’ on me.

As for the stress relief - just cultivate a murderous contemptuous stare and the ability to suck your teeth very loudly indeed .. it works wonders (it is even guaranteed to clear a path through all the family groups of tourists walking slowly and five abreast down Oxford Street .. as well as swiftly moving the blithering idiots who cant get to grips with the fact that it is a capital offence to stand on the left of an escalator)

[komnaes]

.. - just cultivate a murderous contemptuous stare and the ability to suck your teeth very loudly indeed ..

Votz, I am the master of glaring, and it doesn't work in some parts of the world I travel to for work most frequently, mainly China. You will find perfectly healthy and mean looking grannies just jump right in front of you in a line, and one time I almost sent one of them flying off the ground by flinging my suitcase at her. Did I feel bad? God No!

Back to the topic - as a newbie I am at a scale of 9.999. I have been a member for a month now and from the stats I know I have spent 6d 11h 28m and counting in here. Reading the lessons over and over again, my mode swinging from really scared, depressed to slighly optimistic.

Hope things will get better soon...

Shaun

PS - Votz, sorry to hear about your friend... hope he gets better soon..

[megasept]

For me, it's NOT ABOUT the number of TIMES, but the kind of thoughts. It's all about emotions, not time management!

I don't think I ever lay awake at night saying "Why me?". My recollection is that I have always accepted my HIV as simply what I have to deal with, instead of obsessing on the "whys" or "what ifs".

If I believed simply thinking about HIV or being POZ was a problem, then I'd stay away more from these Forums (as some of our fine members choose to do). I don't. I doubt visiting daily hurts more than it helps. In fact, I hope it keeps me from spinning some narcissistic cocoon.

Obsession with the negative ("Why me?", mortality), unobtainable ("cures"), would harm me. Mostly I manage to be at peace over what I cannot affect. I am still learning this.

   -megasept (who can't provide a numeric answer)

[BT65]

Votz, I am the master of glaring, and it doesn't work in some parts of the world I travel to for work most frequently, mainly China. You will find perfectly healthy and mean looking grannies just jump right in front of you in a line, and one time I almost sent one of them flying off the ground by flinging my suitcase at her. Did I feel bad? God No!

    I would love to see that!

[Peter6836]

I try not to invest too much time in my HIV AIDS. I wish it would not invest so much time in me. I have had to change my life. I go to work and  many days just fade by mid afternoon. I find that I do not have the energy to do the things I used to do. I also find that my brain just does not work the same way as it used to. I try not to let it take control of me. But I do find it effects my emotional and mental well being often. I do not want this disease to control my life but when it limits what I can do it is difficult for that not to happen. So I find myself reorganizing my life. Changing my plans and expectations. I still contol things I just find that I have to contol things differently.
Peter

[Jeffreyj]

The 80's.......90%

The 90's......50%

The 2K's.....30%

That's a rough average.But I think it's pretty accurate


Good Question!

[megasept]

Hmmm...
...It hasn't hindered my life yet. Except that I'd like to be 100% out with my family and not telling them is something that haunts me.

Milker.

Milker: "Haunting" might cause some "hindrance".

  -megasept

[bocker3]

Eric,

When I was first diagnosed, I was probably at about a 15.  This went on for months, but once I finished my research, felt OK with my meds, had months of therapy and (finally) got an undetectable VL, things got much better.  I'm probably at a 2 now.  Just like Moffie said, I take my meds on sort of auto pilot now -- even turned the alarm off on my phone.  I may ratched up to a 3 or 4 between blood draw and doc appt, but all in all it is not taking up much space in my head.  I actually went away last week, and didn't wonder how many other poz were on the ship -- amazing really.

Hugs!
Mike