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Author Topic: LTS & alone - how does one keep going?  (Read 12790 times)

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Offline rwt44102

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LTS & alone - how does one keep going?
« on: March 03, 2013, 04:12:13 pm »
I'm a LTS [24+ years]. I've "been there" since Day One, sorta…living in the Midwest-Ohio, AIDS took longer to get here.
Having been an AIDS activist; volunteered on HIV services council; volunteered w/ gay non-profit, etc.
I'm wondering; how does you live alone [no friends - family is distant], on disability/fixed income - no car…how do you keep from losing your mind? :o Suggestions? :D

Offline Jeff G

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Re: LTS & alone - how does one keep going?
« Reply #1 on: March 03, 2013, 04:27:42 pm »
Hi Rwt . I once asked that same question and then I found this forum . I credit the forum for saving a little bit of my mind that I was loosing for the living isolated , broke and feeling like I was the only one on the planet .

I hear what you are saying and I understand how hard it must be for you to find a way out of the isolation , so while you are working on a way forward , please know that there are always people here that are willing and able to lend an ear and offer support .

Im wishing you the best . Hugs , Jeff .
HIV 101 - Basics
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Offline Fisher

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Re: LTS & alone - how does one keep going?
« Reply #2 on: March 03, 2013, 04:58:39 pm »
You're a good man, RTW!
- fisher
06/15 CD 365 %24 VL<20
01/15 CD 468 %24 VL<20
09/14 CD 385 %22 VL<20
07/14 CD 391 %20 VLUD
04/14 CD 486 %23 VL<20
11/13 CD 351 %21  VL<20
10/13 CD 390 %16  VL<20
06/13 CD 315 %19  VL 22
02/13 CD 396 %14  VL<20
12/12 CD 392 %13  VL320
11/12 CD 428 %13  VL1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Mon - Pa

Offline leatherman

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Re: LTS & alone - how does one keep going?
« Reply #3 on: March 03, 2013, 05:26:22 pm »
wherebouts in Ohio, RWT? several members are in Ohio, and I left Canton/Cleveland just a couple yrs ago and moved back to SC. When I was in Canton, I was the oldest person still living with HIV (out of a handful of 85 or so PLWHA). It was pretty lonely after all my friends and partners passed away.

I credit the forum for saving a little bit of my mind that I was loosing for the living isolated , broke and feeling like I was the only one on the planet .
I think quite a few of us LTSes came here and found a place to hang because of those same feelings. It's why I'm here.  ;) Hopefully, you'll find some camaraderie here too RWT. :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline harleymc

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Re: LTS & alone - how does one keep going?
« Reply #4 on: March 05, 2013, 12:07:35 am »
Hey RWT
 welcome.

 
Quote
how do you keep from losing your mind?

I'm the last person to ask. But at least when I lose my keys I can usually find them within a few hours.

Offline wolfter

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Re: LTS & alone - how does one keep going?
« Reply #5 on: March 05, 2013, 11:55:37 pm »
Welcome from a fellow Ohioan.  Isolation is almost a distant reminder of this virus.  As we watched our entire rural communities dying, we didn't have the "big city" status to do anything.  We watched our loved ones die horrific deaths, and some of us became numb to that hurt and pain.

But, I truly believe that all of the LTS's have a unique ability to fight.  I also hope you'll find inspiration here like I have.  I came here in my darkest period and have mostly figured out how to move on and have an enjoyable life.  This is my wish for you this late evening also.
Being honest is not wronging others, continuing the dishonesty is.

Offline Dar58

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Re: LTS & alone - how does one keep going?
« Reply #6 on: March 14, 2013, 10:17:06 am »
RWT It's very difficult when you find yourself isolated and alone. I live in the country far from any neighbors. My son went off to college and a few months later my husband went into the hospital and died from Toxoplasmosis and multiple other infections, that's when I learned I was pos. Suddenly I was alone and my health was deteriorating fast.I had to stop working and all I had were my dogs and cats. I think they were what kept me going, I had to take care of them and they took care of me in a way. I began to write and paint, I wrote 2 novels and painted gourds as xmas ornaments, anything i could do without exerting myself too much as I was losing weight constantly despite eating as much as I could fit in (there was only AZT back then) more folks came into my life, there was a support group for a while, but 2 moved away and the rest died. I've had many people ask me how do you live alone with this, all I can say is that I always have interests and things I want to get done, but I also hosted health chats on AOL for 5 years, so that added some human contact and support. I do drive so that gives me the ability to go places. I hope this helps , at least to know that there are people who understand.

Offline jm1953

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Re: LTS & alone - how does one keep going?
« Reply #7 on: March 29, 2013, 10:38:12 pm »
Totally get where you are coming from.  Without getting into my specifics, I will say we have much in common.  Many times I wanted to just give up, but some inner strength kept pushing me along.  This forum has helped me tremendously as I hope it helps you.  Welcome, and remember you are never really alone.

Hugs,

Jeff
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline aztecan

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  • 36 years positive, 64 years a pain in the butt
Re: LTS & alone - how does one keep going?
« Reply #8 on: April 01, 2013, 11:37:29 pm »
I also live in a rural area, except mine is in New Mexico. The early years here were the worst, because everyone kept passing away with this.

I guess, now that I am going on 28 years officially with the bug, the only thing I can offer is to try to reach out to those you can.

This is a great site, as others have said. I found a lot of support here when I first arrived, and I really needed it.

Many here have now become fast friends, and are very dear to me.

So, try hanging around and see if you don't find this to be a nice place to begin to overcome the isolation you are feeling.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline MarcoPoz

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Re: LTS & alone - how does one keep going?
« Reply #9 on: April 02, 2013, 04:27:00 pm »
rwt,

How far from Detroit?  I think a peer-supported road trip is in order if you're interested.

Offline livingmmy9lives

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Re: LTS & alone - how does one keep going?
« Reply #10 on: April 14, 2013, 03:37:05 pm »
This is something I can really relate to. My partner & I spend a lot of time alone because we don't have a lot of money to spend  and no car. Also people who are not long-term survivors don't understand what we go through. We tried a support group and made one good friend and he died. We also tried going to a church but when were were absent for long stretches because my partner was sick it really bothered me that no one ever called to see how is was etc and generally I felt like they didn't have time for us. So we spend our days mostly at home together and it is boring and kind of sad in a sense but thankfully we have each other. I don't know what I would do without him or if I could even stand being alone so much. I have a lot of empathy for you single long-term survivors.
Diagnosed 1988.

Offline livingmmy9lives

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Re: LTS & alone - how does one keep going?
« Reply #11 on: April 14, 2013, 03:45:35 pm »
http://youtu.be/OmPKVvxFb1c

lyrics: Lying in my bed, I think of you
That song goes through my head, the one we both knew
In each line lies another line full of sacred sound
But you're outside where the companies dream and the money goes round
Lying in my bed.
Watching my mistakes,
I listen to the band they said that it could be the 2 of us
The snow might fall and write the lines on the silent page
But you're outside making permanent love to the nuclear age
Two silhouettes by the cash machine make a lovers dance
It's a tango for the lonely wives of the business class
Lying in my bed
Watching my mistakes
I listen to the band
Lying in my bed
With nothing much to say so I listen to the man
He said that it could be the 2 of us
I heard you call from across the city through the stereo sound
And so I crawled there sickeningly pretty as the money went round
Lying in my head watching my mistakes
I listen to the band
And the drums beat in my head
Pianos chime the sound in this prison of the house
And as the illness comes again can you hear me through the rain
As I listen to the band?
As I sing the silent song
Mime each lonely word
Please listen to the man he said that it could be the 2 of us
Alone but not lonely, you and me
Alone but loaded.........

Diagnosed 1988.

Offline mitch777

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Re: LTS & alone - how does one keep going?
« Reply #12 on: April 14, 2013, 04:04:34 pm »
welcome to the forums Living! :)
it's not too often that we see "new" LTS posting for the first time.
hope we can get to know you better. :)
m.
33 years hiv+ with a curtsy.

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: LTS & alone - how does one keep going?
« Reply #13 on: April 21, 2013, 07:38:12 pm »
I stay alive to spite everyone. Makes me happy...

That said...by nature, I'm a loner. So not sure if my outlook on life will be of much use to you. There are ways to pass the time...reading, writing (letters to faraway friends), cow-tipping...but only if you live near farms.

Another option would be to go on line and explore potential connections. Look up all the hair dressers in towns near you. It's cliche, yes, but I bet if they're men they're gay. At least it would be a start and they probably know other men who aren't hairdressers.

Best of luck...
Of course it's important. It's an email...

Offline phillypinko

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Re: LTS & alone - how does one keep going?
« Reply #14 on: April 22, 2013, 02:22:57 am »
I've lived long enough to relate to where you're coming from. I tested positive in '92 when I was 20 years old. I made what at the time was a logical decision. I was told I had 5-7 years of good health ahead of me so i reasoned it was pointless to finish school. I dropped out signed up for as many credit cards as I could get and worked jobs that paid cash(bartender,barback,waiter). I've travelled the world and all through the U.S. Now im 41. My parents are elderly and sick. I collect the minimum on disability and live in public housng. I didn't anticipate living this long! Now im looking at a lonely life where I am either rejected because i'm on disability or because of HIV. I literally have had guys strike up a conversation with me in a bar. We talk for 5 or 10 minutes then they ask what i do for a living. They abruptly end the conversation by not saying another word and walking away when they find out i am on disablity. I would give anything to meet the right man and live happily ever after but I think that is a pipe dream. So im chasing another pipe dream by writing about what it was like to test positve at such a young age before there was a treatment and how it changed my life. I've accepted being lonely is my cross to bear. I do a lot of praying. I ask God to give me the strength to accept his will for me.

Offline blk1888

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Re: LTS & alone - how does one keep going?
« Reply #15 on: June 19, 2013, 10:01:02 pm »
Howdy,

Frankly, I've run into the same wall every 4 or 5 years.  It is a good idea to be involved, to find and do things you care about, so you on the right track.  Other, than that, I do not know.

I'm trying to develop my spirituality and creating huge challenges for myself to overcome. 

I'm alone, with a few friends, trying to start a forth career, looking friends in all the wrong places....

All I can say is....keep going.

Offline phillypinko

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Re: LTS & alone - how does one keep going?
« Reply #16 on: June 19, 2013, 11:58:23 pm »
Hi Rwt . I once asked that same question and then I found this forum . I credit the forum for saving a little bit of my mind that I was loosing for the living isolated , broke and feeling like I was the only one on the planet .

I hear what you are saying and I understand how hard it must be for you to find a way out of the isolation , so while you are working on a way forward , please know that there are always people here that are willing and able to lend an ear and offer support .

Im wishing you the best . Hugs , Jeff .
"...isolated, broke and feeling like I was the only one on the planet..."  When I read this I had to make sure it wasn't one of my posts! I fought and fought to survive. Now I wonder what the hell im going to do until I die. Im not getting any younger. People aren't exactly lining up around the block for a 41 year old hiv+ bipolar man living in poverty.

Offline Calison

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Re: LTS & alone - how does one keep going?
« Reply #17 on: June 20, 2013, 11:40:04 am »
 I am faced with this also. My energy level is very low and it takes a certain amount of "feeling good" to want to enjoy the company of other humans. I am also more of an introvert personality and it takes a large effort for me to initiate relations.
I am a single man.
 I struggle ,energy wise, every day just to keep my home in order/clean and cook meals and care for my little dog. Having little income is a struggle as well.
 The Psychologist I see encourages me to "count my blessings" as I tend to look at the rest of the world and see such riches and high life in USA and feel that I am missing out. It is easy for me to wallow in my "poverty" however when I look at my life there are many small blessings that I forget about when I wallow in this "Poverty".
 Indeed if I count my blessings rather than see what others are doing, feeling like I am "missing out", ...I feel better.
For me this AIDS is a constant adjustment as illness, energy and loss come and go. Some days are better than other days for me. I have faced these adjustments for many years.
I giggle remembering some comedy show(Saturday Night Live?) and a skit titled... "Lowered Expectations"  ;D . And I wonder how high I set the bar for myself when I am Diseased with this Virus. I try then to remember to go easy on myself. Take one moment at a time and find something positive to think about or remember the joys of the past. Then I try to incorporate some joy in my day somehow. Some small pleasure. Sometimes that is enough, sometimes it is not.
None of us are alone in these feelings and I am a new member here and have found great comfort knowing I am not the only one who has these feelings/situation. Thank You everyone for your postings and honesty here in these forums as it is a great comfort to me.
We are all in the gutter, but some of us are looking at the stars. ~ Oscar Wilde

Offline livingmmy9lives

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Re: LTS & alone - how does one keep going?
« Reply #18 on: December 29, 2013, 11:44:54 pm »
Some time has passed and nothing has changed. My partner & I spending a lot of time alone together - not much money to do things, not many friends because you need money to do things and we have no car which limits us to the local bus service area. I've taken some steps to meet new friends for myself and my partner but so far it's not panning out -  People often treat you differently when the find out you are sick and on disability - I'm finding people just can't be bothered. I hope someday someone will prove me wrong. Feeling isolated.
Diagnosed 1988.

Offline Theyer

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Re: LTS & alone - how does one keep going?
« Reply #19 on: January 04, 2014, 08:04:55 am »
This thread has many new voices so Welcome to all I have not greeted.

No magic answers I am afraid , I do know that loneliness can be as intense in the middle off the city as it can in the depths off the country. I am struck by the collective wisdom in this thread also I am wondering wether this epidemic off loneliness, isolation , poverty is about the age we live in, the expectations pumped out by the media we consume and the vast gap between that and the realities off most.

However I do know I will not be defeated and intend to have as full a life as possible and in some odd way this is what gets me through the worst times , and those times have been very bleak indeed.

So , all off you who have posted please come back with up dates , thoughts , create some energy even a drop created here can lead to something.

With love my dears
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline neb_top

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  • lts and alone
Re: LTS & alone - how does one keep going?
« Reply #20 on: January 10, 2014, 10:43:05 pm »
hello; dec 2013 is my 25th anniversary for being poz. i am lonely and have reached out to many but despite having a car so i can be with friends, i'm still alone. i would love to meet someone who is poz and compatible and have chemistry and be my life partner and get married. i keep running into guys that play games, etc. can't connect with anyone that will be monogamous and only want his partner and no one else.  i am taking paxil and don't see therapist or psychotherapist. i live alone. thanks for reading, -jim
« Last Edit: January 10, 2014, 11:01:23 pm by neb_top »

Offline Jeff G

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Re: LTS & alone - how does one keep going?
« Reply #21 on: January 10, 2014, 10:47:09 pm »
Hey Neb, we are a support forum and not a place for singles to meet . Have you checked out this http://personals.poz.com/ .

We can give you emotional support but we a not a dating site .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Theyer

  • Member
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  • Current ambition. Walk the Dog .
Re: LTS & alone - how does one keep going?
« Reply #22 on: January 11, 2014, 02:48:25 am »
hello; dec 2013 is my 25th anniversary for being poz. i am lonely and have reached out to many but despite having a car so i can be with friends, i'm still alone. i would love to meet someone who is poz and compatible and have chemistry and be my life partner and get married. i keep running into guys that play games, etc. can't connect with anyone that will be monogamous and only want his partner and no one else.  i am taking paxil and don't see therapist or psychotherapist. i live alone. thanks for reading, -jim

but a great big welcome anyway. and get and post this in the right place .As a complete born again virgin who has never had experiance in dating sites and living in the UK I am obviously the best person to poke his nose in. PUT in more off what you like/enjoy/dream about ect . Then without slandering anyone come here and start a thread off your own.

Dating for me was differcult when I was HIV- which I think it was and is for alot off folk , we just tend to forget that when the positive thing comes alone.

lots off luck and have fun and lots of forgiveness in your kissing off Princes.

Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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