The Long and the Short of It.

[thunter34]

Life.  Or perhaps the Non-Persistence of Memory.  Whatever one might choose to call it, it is my continuing awareness of what feels like an illogical progression of time.  HIV brought out in me a state of almost constant hibernation, a withdrawal, broken only sporadically and then just for brief periods of time.  Most often, you don't see me.  I was physically sick for a fairly significant length of time- and psychologically traumatized for even longer.  One could certainly make the argument that that condition is ongoing.  I was necessarily taken out of society for awhile.  During that removal, something changed in me and I sort of "fell out of practice" socially.  A timidity reappeared that hadn't been there since I was much younger.  Along with this condition has come what appears to be a distorted perception of time.  It seems days and weeks can stretch on and on, yet events from a decade or more ago feel as though they could have happened this morning.  This is especially true when I see pictures of "club life" or hear music from the same.  The distortion is most pronounced then.  Those days feel at once like yesterday and a lifetime ago.  Heaven help me if I should happen upon a reminder of someone I used to hang with who has since passed on.  It can sometimes throw me into a headspace where I quite literally lose where I am in place and time for a few moments. 

So often many of the physical side effects of HIV and meds get debated or masked as something "other".  My experience has been that doctors are often all too eager to assign things like lipo or cardio problems as simply conditions of aging.  And it can be hard to argue since the waters get murky.  A part of me wonders how much is true of this area as well.  How much of what I am experiencing would fall under "consequence of aging" and how much might be attributable to my experience of HIV/AIDS?  I wonder how much might also be a direct result of the withdrawal that came about from both sickness and trauma- or perhaps might even be attributable to HIV and meds' effect on the brain?  Is it partly symptomatic of brain fog?  Am I just feeling increasingly old and in the way?  At just shy of 37, shouldn't I still feel too young for such a self-identification?  If so, why don't I?

[mjmel]

Oh honey child you are just getting older. It's like that...little shocks.....here and there. At 37 you are not old but getting older (read: mature). See? Plus the illness didn't help perspective because it interrupted what would have been the more natural order.
Moving from a dimension in time and space....(OK, now I'm doing the twilight zone thingy.)
Anyway my sincere input. Short and to the point to keep from getting philosophical.

Mike

[thunter34]

Oh honey child you are just getting older.  Plus the illness didn't help perspective because it interrupted what would have been the more natural order.

Thanks, Mike.  But notice that even in your reply you acknowledge HIV as a component- more than simply getting older.

It's part of that murkiness I mentioned.  The lines get blurred.

[pozniceguy]

Tim  as someone who is "older"  I can tell you that you have along way to go...The distorted timeline is  ..in my opinion ..a combination of both the age and the HIV...I now find myself remembering very explicitly..things that happened in grade school but..... not infrequently .... I have to sit for a moment at the bottom of the stairs and try to remember why I just came down...  I know a number of "older"people  not HIV+ and the timeline problem for them is more like a full memory disc in your computer...they have so many memories that it takes a few minutes to find the recent ones in the memory  disc  but they seldom have the "flashbacks",,,,...... I am more in your mode...distinctive flashes of long ago....and a little slow on the current issues.   I can only guess what combination of the meds  HIV and time might cause this     maybe we need to find some Grad student who needs a thesis subject to take on a study.....??

Nick

 ..I am looking forward to meeting you.....I have prepared a little list of names so I will not forget who  to be sure to meet.. with nearly 50 people so far there may not be enough time to really talk to everyone....

[Bucko]

There really is no way to separate HIV from the rest of your experience. There are muddy boundaries and blurry lines everywhere. You cannot unravel the different yarns that compose the texture of your existence.

I hate to sound like an Existential fuckwad, but it simply is.

Brent
(Who isn't getting any younger either)

[koksi]

Are you asking what effect HIV has on memory? 

[Miss Philicia]

ugh... I'm not quite sure I understand the question completely.  But I do know I could have written that first paragraph word for word myself -- reading it was almost frightening in that respect.

[thunter34]

Are you asking what effect HIV has on memory? 

Yes, partly.  I'm asking several things, but mostly rhetorically...because (as Bucko so ably pointed out) there is no way to unravel the individual threads that make us who we are.  I'd say that, for the most part, I'm just commenting on some conditions I have come to recognize in myself and wondering aloud what is at the root of them. It's not only this scrambling of memory that I have become aware of within myself, but I've noticed that I seem to be spiritually "winded" as well.  And it feels like it is becoming increasingly so over time.  Sort of like soul fatigue, if that makes any sense.  And I will admit that I can't seem to shake the gut feeling that HIV and/or the meds are a contributing factor on a physiological level. 

There's more going on here with me than garden variety "fear of stigma and rejection".  Heck, everything short of my hoo-ha has been posted on this site everyone in the world to see- not to mention the baring of soul that I've done in threads just like this one.  This isn't a particularly easy thing for me to acknowledge publicly.  But I do so because I grown so acutely aware of it within myself- and because I recognize the same patterns time and again in the poz community.  I also get the sense that it is an area that people are often intensely uncomfortable discussing, perhaps even downright afraid of admitting about themselves.

I'm just tossing all these ideas and comments up and seeing where they land.  To see if any or all of them resonate with others here. 

[Miss Philicia]

Dear, is it HIV itself, or simply the fact that you have a severe, long term, life threatening disease?  I tend to think it's the latter, perhaps complicated AT TIMES by the actual virus and what it may do to the noggin.  I've long thought very little attention is given to the effects of post-traumatic stress on our Elite Club.  And of course, any PTS will amplify any sort of "issues" that were present before diagnosis, causing each of us to have differing degrees of PTS... though some will say they have none at all.  I'm also cognizant that one can seemingly have no PTS and then a decade later it rears its head, speaking from experience that is.

As far as being uncomfortable about discussing this, it's human nature to think it's more effective to sweep uncomfortable mental conflicts under the rug.  Sometimes this is a decent solution and works, but inevitably it just moves things further down a timeline.

Or maybe I'm still not getting what you're referencing with all of this.

[Robert]

HI TIm

I certainly don't think this is an 'age' thing.  I'm 20 years older than you and experiencing the same symptoms you describe.  I also had a debiliting illness and long-term recovery.  We're both on meds.  The difference is, 20 years ago, when I was 37, I was at the prime of my life.  EArning more than I ever would.  8 years into a long-term relationship.  Buying property with my partner.  Visiting friends, family (not bars especially.)  I could carry on conversations with the best of them.  Remodel my house.  Travel the world.  At 37, you're far too young to be experiencing this stuff.

Now, the best I can do is just do what my partner asks of me.  Very, very menial chores.  He does the planning and figures out how to do it, then tells me to do it.  It's that simple.  And I don't complain because I've made far too many mistakes when I try to do it my way.  I've learned not to trust my own judgement.

I can only relate this to the meds.  Oh it may be the virus but it seems to me viruses have been around millineums and I'm sure there would be records of such  side effects. The meds are new. As Alex (allopathicholistic) says, "...so maybe the meds are breaking my body down   yeah, i think that's what's going on."  And they're doing a good number on the gray matter as well. And I don't just mean "brain fog".  This is not a matter of just putting up yellow post-its as reminders to turn off the lights.  It's far more than that. 

And,let me add that the more fragiile my memory becomes, the more emotional I become.  Watching Terry Fator and his singing dummies from America's Got TAlent has brought me to tears the last 2 weeks.  That's just ridiculous.

robert

[koksi]

I don't think I have ever met you and haven't read a lot of your posts here, but I would be inclined to reject the premise that what you are describing is just getting older.  You seem to be describing a sort of generalized mental fog or "decline" in mental capacity...  I can't quite tell whether you are identifying a specific issue to do with memory or a more general cognitive impairment.  But it doesn't really matter I guess.  I read you here as fearing that HIV and medications damage our minds and our souls.  And yet for every instance of someone saying that s/he is slowing down due to the disease-meds, there seem to be instances of people who claim to feel better than ever.  In fact, for me, having had this disease for only about a year, the uncertainty of what lays ahead is frustrating, as is the constant reminder that the disease unfolds so differently in different people for reasons no one much understands.

If you are feeling a sort of brain fog or mind fog, perhaps you can help narrow down which cognitive channels are most affected.  For example, you say that there are memory issues going on.  What about other activities, like reading or writing?  Clearly, you are able to express yourself eloquently.

I wonder simply about energy.  I have experienced rapidly diminishing reserves of energy, and I attribute this to HIV infection.  I am not on meds and I have a high VL, so I tend to think that the unique effects of the virus itself are ever present.  This includes at the moment occasional bouts of PN-type stuff in forearms and legs, itchy scalp and other skin effects, and above all, and most worringly, just a lack of energy to do very much.  My libido is gone entirely.  I read and write a lot, but I am only able to do these things when I feel I have the 'spark' of inspiration.  A cup of coffee used to do the trick.  Now it doesn't.  I can drink several cups of coffee, and feel just enough mental energy to do the bare minimum that my job requires.  THIS fact has been the most frightening for me.  My work requires me to concentrate and to be mentally creative.  But if the energy reserves that those activities require disappear, I am fucked.

All of which leads me to the steroids.  I have to say, I probably invest too much hope in the idea that testosterone treatment might help reverse the tiredness -- the emotional, cognitive, and physical tiredness -- that I seem to feel too often these days.  I hate to be bioreductive, but I wonder whether you have tried these sorts of treatments?

[thunter34]

Nope.  I haven't tried the steroids- and would not have an easy time getting them either.  My meds come from public funding sources, and unless one is becoming absolutely skeletal, they are loathe to hand out scrips for such things.  Likewise, prescriptions like Adderall and such.  My testosterone levels fall within the "normal" ranges, so fat chance of anything like that for me.  About the only thing they'll provide is a B-12 shot, which will make a world of difference for about 30 minutes.

And yes, I would say I am addressing general cognitive impairment- not just memory.  I'm also noting that I seem to be losing my "zing".  As in, I feel like I am getting dulled all around.  It's some sort of personality / behavioral change that is going on.  And I am really of the belief that it is more than just "getting older". 

Which cognitive channels?  I don't really know.  Yes, I can express myself pretty well.  I also notice of myself unusual things like, for example, I notice that I mutter to myself an awful lot now.  Sometimes rather nonsensical things.  It's not loud or drastic- not like a full-on Tourette's type deal, but it is present and somewhat alarming to me.  I am more and more frequently losing the placement of people and events as they fall on the time line.  I'm also (as stated in a post above) getting emotionally tossed up and down, often by absurd stimuli.

As I have sort of joked before:

"Cotton really is  the fabric of our lives!"    ::begins to sob uncontrollably::

[Andy Velez]

Hunter, I don't see what you are describing as an aging thing at all. Or if so only in the sense that as we accumulate more experience with the passage of time sometimes there is a shift in perspective.

Rather, I see what you're talking about as connected with some deep feeling on your part, something which I read as having a somewhat elusive but with a very definite resonance to it.  There's a certain sadness to it, but there's more to it than that. Sometimes there just aren't words for something and so we do the best we can to express what we're feeling. And simply because something is elusive does not make it any less substantial or real.

It seems to me that what you're talking about now is something you've alluded to at different times in previous things you've written. If I'm accurate about that then this has been around for a while. And it's something important.

Does any of this strike any chords at your end? 

[mjmel]

prescriptions like Adderall and such........they help one to focus, and stay organized. it pisses me off that more doctors will not utilize these types of meds to people who will and currently are dealing with fatigue, concentration, and other mental difficulties.
it has made the difference in my life and a few others who frequent this cite.
it is the oddest thing to me because they don't seem to use any restraint in having a small child pop them for attention deficit disorders.
no, pills are not the answer to everything--but it makes a difference in my daily dealings with having to live with HIV virus or HIV meds related fatigue/mental disorientations/focus issues.

Mike

P.S.THunter, you clever man. you saw 'through' my previous post, didn't ya.

[Miss Philicia]

I've never had difficulties getting things like this prescribed, as long as one goes about it in an appropriate manner.  You girls need to be more skillful.

[David_NC]

Tim,

I'm not sure I understand exactly what you're dealing with, but it does sound unsettling.  I do know if, for some odd reason, I miss a couple doses of Adderall, I have a hell of a time doing much of anything, remembering things, and being generally alert.  Even before HIV, I had ADD; add the distraction of HIV, HAART, damage from OI's (PCP, in my case), some recreation drug use years ago, current THC intake, and age... who knows what the 'real me' would be like.  I also don't have the energy I used to.  I attribute that directly to the PCP and lung damage causing permanently reduced lung capacity.  Another thing worth thinking about is that as some of us age, mental issues come into play.  These are not directly related to the process of getting older, but seem to show up over time.  This may not apply to you, but it's worth considering.  Maybe an appointment or two with a specialist would help.  If nothing else, it could help you get medication which might really be of benefit to you.  The only other thing I can think of that helps me is staying busy.  I don't mean only physically active, but busy in general.  Take care.

David (who thinks that busy hands are happy hands, and that the world is a better place with Adderall)

[Buckmark]

Tim,

Sometimes problems can clearly be ascribed to HIV.  Sometimes problems can clearly be ascribed to aging.  Oftentimes it is not clear what the underlying cause or contributing factors to our problems are -- HIV, aging, luck can all play a part.  As Bucko points out, it is notoriously difficult for us to separate HIV from the rest of our experiences.

I think there is a tendency in the medical community to discount any problems that HIV-ers report, that cannot be directly linked to HIV.  Fatigue is a good example, as well as various mental health problems.  I think the trouble is that the medical community hasn't studied these problems, and doesn't know what to do about them.  So we're simply told "it's all in your head" (no pun intended).

You know yourself best -- if you feel something is wrong with you, that something has changed -- then there *is* something wrong and action needs to be taken. Whether aging or HIV or something else is the cause doesn't seems secondary, in some respects.   In these situations, you have to be your own best advocate, and if necessary, enlist a trusted friend or family member to advocate for you. 

The difficulty and frustration can be in what to do about it, and getting someone to listen.  And if you're dependent on public funding resources, that makes it even more difficult.  From my recent experiences starting a few months ago (and there's a lot more that went on than I wrote about here)  it seems to me that mental health care system is far more difficult to access and navigate than standard medical care.  Accessiblity, diagnosis, and standard of care, seem to vary greatly.

You seem to be very sharp to me, and express yourself well.  But, truthfully, I see only a very small window of you and your life here on the forums.  Obviously, this is something that you feel strongly about, and that troubles you.  Have you discussed this with your doctor, to see what he might recommend?  I'd think it might make sense for you to be evaluated by a psychologist or neurologist or psychiatrist, as they would be far more knowledgable, and in a better position to help you, than your HIV doc.  If they are not accessible to you, do you think you could lean harder on your HIV doc?

I'm hardly an expert at these things.  I just want to see you get the help that you need.

Hugs,

Henry

[thunter34]

Thanks for the replies, folks.  I am still digesting the responses and sorting them out.  One thing I can comment on is this:  Things like Adderall will definitely not be forthcoming in my situation.  And philly, if you think it's just about being underskilled in asking, I say try it down here in the good ol' south and see how it works for ya.    

There's a very real reticence to prescribe things like Adderall because, frankly, there's an almost palpable opinion by many that we're all a bunch of junkies anyway and they aren't gonna further it.  This is especially true of things like amphetamines, and given the crushing number of crystal-fueled infections, it can be hard to blame them.  If I was a doctor seeing one after another come through the door relaying tales of meth-fueled bareback parties leading to eventual infection, I would be hard-pressed to turn around and write a publicly funded presciption for an amphetamine.

And the truth is, I don't know that that would entirely do the trick anyway.  Increase focus, perhaps.  But some of the other conditions don't feel like something that particular line of medicine would correct. 

And to Andy:  yes, much of what you say strikes a chord.  It is a similar theme to posts I have made in the past.  It something that seems to be growing broader and deeper.

[Miss Philicia]

You know, I was actually going to ask in that post of mine if this was a regional thing.  I see somewhat more hesitation even comparing Philadelphia with NYC, though only slightly -- I can only imagine what it's like in the South as from what I recall you should pray all of this away.  It may also involve a time element.  10 years or so ago when they assumed you were going to croak  anyway they handed out the party favors more freely, and as I've been on some stuff for a while they continue what I'm on though I will add that, on my own, I've eliminated everything except klonopin and that I've cut in half. 

Mileage may vary... definitely if you state that you've done a lot of drugs in the past they will suspect addiction predisposition and tighten up on prescriptions from some things.

I still must wonder why you aren't giving weekly therapy a go.  Is it just an insurance issue?

[thunter34]

You know, I was actually going to ask in that post of mine if this was a regional thing.  I see somewhat more hesitation even comparing Philadelphia with NYC, though only slightly -- I can only imagine what it's like in the South as from what I recall you should pray all of this away.  It may also involve a time element.  10 years or so ago when they assumed you were going to croak  anyway they handed out the party favors more freely, and as I've been on some stuff for a while they continue what I'm on though I will add that, on my own, I've eliminated everything except klonopin and that I've cut in half. 

Mileage may vary... definitely if you state that you've done a lot of drugs in the past they will suspect addiction predisposition and tighten up on prescriptions from some things.

I still must wonder why you aren't giving weekly therapy a go.  Is it just an insurance issue?

I definitely think both region and time are playing a factor.  I've read in several posts of yours how it seemed to be much easier to get things taken care of up north than it is down here.  Not just prescriptions, but across the board.  For example, I remember you being taken aback that we have to renew all paperwork- all of it- every 6 months just to keep in the system.  If any portion of it gets held up, all services and prescriptions stop.  And yes, the time thing plays a factor now that it is not expected that people will croak right away.  Some people are "grandfathered" with prescriptions they have been given, but newbies aren't as gladly received in the scrip line as they once would have been.  Also, as time goes on with flatlined funding for ever increasing populations, there simply isn't money budgeted to handle everything. 

I think to that end, there are certain side effects of HIV and/or meds that people can't afford to acknowledge- whether the cost is too great emotionally or simply financially.

And also to that end, I'll have to say if there are only so many dollars to go around, I'll table a portion of my sanity to keep someone else around for whatever period of time we've got.

And just keep talking to myself.  I'm a pretty good orator.

At least that's what the voices keep telling me- but they've been known to flatter.   

[David_NC]

I don't know about the regional issue having much to do with meds like Adderall.  I've not ever had a problem getting legit. prescriptions for it.  A friend of mine gets 3 times as much as I do from a reputable doctor.  He was tested for ADD and prescribed Adderall for it.  The thing is... he even looks a bit like a druggie / junkie.  Perhaps it varies city by city.  My ex never had problems getting antidepressants, tranquilizers, etc.  She saw a Dr. and her copay was around $20 per visit.  This was years before she had insurance and was through the health dept.  Like I've said before, the generic versions of many of these meds are not expensive.  If you think you might benefit from it, check with the health dept.  Maybe you'll be helped like several others I know.  Take care.

David

[BT65]

Hey Tim:
   I also, like Philly, wonder why you don't do therapy.  Is it just a matter of cost?  I do therapy usually once a week (sometimes every two weeks) and it really helps.  I have dreams sometimes of people from my past and when I wake up, it seems like I have seen these people yesterday.  I'm not nostalgiac or anything, but sometimes the past just creeps up on me.  I also talk to myself sometimes.  I'm not sure what I say, and I don't know if that's a good thing or not.  But then, I'm older than you are so I probably have a lot more to say, even if I'm only talking to me.
Peace-
Betty

[Robert]

"And also to that end, I'll have to say if there are only so many dollars to go around, I'll table a portion of my sanity to keep someone else around for whatever period of time we've got."

As long as you feel this way, you'll be OK.  It's this same kind of thinking that keeps me going.

robert

[thunter34]

Thanks, Robert.  Let's hope it keeps working for us!

To others:  Yes, I have done the therapy thing for a good while- and had a rather good one.  I may start back with that fairly soon.  Even though what I've been experiencing doesn't seem to fit in the "tell me about your mother" catagory, the concern over what I am experiencing might be something in and of itself to talk out with someone. 

[koksi]

I was taking Celexa for depression for a few months before getting infected and then for a bout a year after.  I quit because I suspected that it was making me anxious in some way or contributing to a general feeling of disorder; I suspected it of making me feel sort of compulsive actually.  I thought some of the side effects were undesirable (grinding teeth!), and the drug was failing to do the one thing I wanted it to:  alleviate depression.  So I stopped.

With respect to Adderall and other things, I guess I just worry about having my mood linked so integrally to a drug.  Something about it bothers me.  And certainly, the pharmaceuticalization of mood is something that worries me just in general.  Although, as a person with HIV, I guess I will soon have to get on very good terms with the pharmaceutical industry.

For me, in terms of prescriptions and such, the crazy thing is that I live in freaking Finland.  The HIV care is really pretty bad for a variety of reasons, although my basis for comparison is very narrow.  In general, the docs here are not at all aggressive about things, and I have been told by one friend that I will have to fight for what I want.  On the one hand, I am delighted to have healthcare at all.  On the other, it would be nice if I felt the docs here really knew a lot about HIV and had a lot of HIV patients.  And I don't get that impression at all.

Anyway, Thunter34, sorry about the brain fog and above all about limited to access to medications that might help.

[jack]

could be depression. I used to hate when my drs would say maybe I was depressed when ever I complained about something,but when I did become depressed I knew it.  I cant say I have experienced anything like you describe but I can tell you I have been through some pretty wicked mental and emotional periods while on hiv drugs.
Are you exercising or meditating? Both can help greatly with the fog and emotional problems.
Prezista has changed my life. Even though I still dont look normal or like I used to(which may have not been normal),I feel great, I didnt even get to depressed when I got run over in stock market last week.
I dont think there is anything more frightening than mental problems,perceived or real, and I think should seek professional medical advice if it continues.

[David_NC]

With respect to Adderall and other things, I guess I just worry about having my mood linked so integrally to a drug.  Something about it bothers me.  And certainly, the pharmaceuticalization of mood is something that worries me just in general.  Although, as a person with HIV, I guess I will soon have to get on very good terms with the pharmaceutical industry.

The thing is, our moods are controlled by chemicals, anyway.  When things aren't 'normal' (HIV, HAART meds, 'chemical imbalance', etc) these chemicals often aren't produced in the proper amounts or are not processed in the normal way.  The way I look at it is that we're not afraid to treat a physical problem, such as an  infection with a drug (antibiotic).  Why are we often so reluctant to treat mental or emotional problems?  Other methods are certainly preferable, such as the exercise Jack mentioned, therapy, situational changes, etc.  When these fail, what else is there?  This is exactly why I said

Maybe an appointment or two with a specialist would help.

  I certainly would not allow myself to feel like you mention feeling without really knowing why and what I can do (if anything) to correct it.  We're likely to live a fairly long time.  We should be able to live a somewhat normal life... emotionally, anyway.

As for saving the funds for another person's health, the friends I mentioned that had assistance with their prescriptions and counselors were not funded by anything remotely related to HIV.  They were funds set aside for people who needed assistance with mental / emotional health.  To me, people in situations like Tim's are just as important as anybody else.  In my mind, emotional / mental health is just as important, if not more, than physical health.

David

[thunter34]

You make a very good point about moods already being controlled chemically, David.  Hadn't really thought of it that way, but it's true.

I do think it is an arrogant and mistaken belief to assume that brain is not subject to maladies just like any other part of the body....a la Tom Cruise and the Scientology bunch.

I also wonder if perhaps a certain amount of insanity is symptomatic of sanity itself.

"I think, therefore I am" is quite naturally followed by "But how and why am I?"

The great unknowables.