POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: mitch777 on July 28, 2013, 10:11:00 pm
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These past few years I'm torn inside about how to express how I am feeling. I am more needy and feel frail. I am one of the longest LTS I know, even here. Not expecting a prize. Haven't gone through the hell of many who's stories I've read but my life is all that I have to go by. Spending time here has actually humbled me further.
Often people get turned off by someone "wearing their heart on their sleeve" and I am tending to do this more often lately.
Is this bad, human or a need for a wake up call for correction?
I entered into these forums with an attitude of "these people are strangers, I can ask anything and simply be myself". Well, as I get to know everyone, the dynamics change. Suddenly the freedom of expression gets mixed into personalities. Sometimes it's a bit overwhelming.
Spilling my guts. Just me. :P
For some reason I can't seem to open up in this way to my therapist. Guess it's partly due to my German stoic genes? Family? I dunno.
Just running out of steam.
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I have felt the same way Mitch . I have to remind myself sometime that its OK to seek support on a support forum . Its uncomfortable to open up and put your pain or confusion out there for all to see and comment on to begin with , but when you add the fact that we also use the forum as a social outlet it can be awkward at times .
We always have the trusty pm button if we don't want to post in the forum and have something to share or need a sounding board , some of the best advice or simple comfort has come to me via the pm feature .
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I have felt the same way Mitch . I have to remind myself sometime that its OK to seek support on a support forum . Its uncomfortable to open up and put your pain or confusion out there for all to see and comment on to begin with , but when you add the fact that we also use the forum as a social outlet it can be awkward at times .
We always have the trusty pm button if we don't want to post in the forum and have something to share or need a sounding board , some of the best advice or simple comfort has come to me via the pm feature .
Mitch Jeff is right. It's very easy to talk about things like symptoms to strangers but harder to talk about them with a whole group of people you know. Kind of like a school or social group - you wouldn't announce to everyone that you were feeling depressed but you probably would talk to one or two trusted people in private. PM is great!
I mainly use the forums for a laugh (as you all know) but I'm a good listener and once in awhile have a smitten of good advice. It's my belief that our bodies and our spirits have aged more quickly than other people our age and as we get older our feelings are closer to the surface. It's natural what you are feeling. I hope that made a small bit of sense.
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I have felt the same way Mitch . I have to remind myself sometime that its OK to seek support on a support forum . Its uncomfortable to open up and put your pain or confusion out there for all to see and comment on to begin with , but when you add the fact that we also use the forum as a social outlet it can be awkward at times .
We always have the trusty pm button if we don't want to post in the forum and have something to share or need a sounding board , some of the best advice or simple comfort has come to me via the pm feature .
Thank you Jeff. You have been there whenever I needed support. Online and in pm's. Just emotional and tuckered out tonight I guess.
And everyone else here (countless names) have kept my spirits high and I can't say thank you enough.
Sorry for falling apart tonight.
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Mitch Jeff is right. It's very easy to talk about things like symptoms to strangers but harder to talk about them with a whole group of people you know. Kind of like a school or social group - you wouldn't announce to everyone that you were feeling depressed but you probably would talk to one or two trusted people in private. PM is great!
I mainly use the forums for a laugh (as you all know) but I'm a good listener and once in awhile have a smitten of good advice. It's my belief that our bodies and our spirits have aged more quickly than other people our age and as we get older our feelings are closer to the surface. It's natural what you are feeling. I hope that made a small bit of sense.
Thanks Charles.
Well said. I just felt the need to bring these feelings to light here. I'm sure I'm not alone. Guess my feelings tonight are close to the surface.... if I shave will they go away?
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Mitch you can fall apart anytime with us.
I censer my self here , no I limit myself here , if I posted all the health things I ,d never get out off bed however I have vented and its helped.
However I think we all know where this thing takes us and again that helps. Often people who answer others I have notice share off there self, I do.
I am about to leave the flat I have lived in for 28 years, moved here with my late partner. So Mitch and everyone this is warning off at least one vent , plus I collect things , the new flat is half the size , I collapse if I carry a bag off shopping somedays , hate getting others to do things for me hate bureaucracy and the next 2 months is going to be an orgy off both. Plus although the new flat has alot going for it its present decor is not one off the plus points.
Anyone in London want some good mid century furniture ? 50,s plastic ? 60,,s portable TVs ? Glass lamp shades ? wool blankets .....................
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this is exactly why I adore you mitchypoo. You've expressed my thoughts in a way that I can't. I know we all struggle with these issues. I've lost patience with the progression of this virus and the lack of knowledge.
I'm not speaking for others, but we old farts feel it's time to pass the torch. I'm worn out from dealing this with virus and am tired of it. Sometimes, enough is it
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Mitch you can fall apart anytime with us.
I censer my self here , no I limit myself here , if I posted all the health things I ,d never get out off bed however I have vented and its helped.
However I think we all know where this thing takes us and again that helps. Often people who answer others I have notice share off there self, I do.
I am about to leave the flat I have lived in for 28 years, moved here with my late partner. So Mitch and everyone this is warning off at least one vent , plus I collect things , the new flat is half the size , I collapse if I carry a bag off shopping somedays , hate getting others to do things for me hate bureaucracy and the next 2 months is going to be an orgy off both. Plus although the new flat has alot going for it its present decor is not one off the plus points.
Anyone in London want some good mid century furniture ? 50,s plastic ? 60,,s portable TVs ? Glass lamp shades ? wool blankets .....................
Michael,
Thank you for everything.
Falling apart scares me. I came here with the "no shame" attitude and hope I can hang onto it.. Honest expressions of our existence and feedback make a world of difference here. I often hear some complain about people being "whiners" (not here) and wonder if they understand that complaining about others "whining" isn't "whining" in itself. Better said, a lack of compassion.
I try to look at these forums as a give and take. I know you do as well. Hopefully each one of us can bring clarity of thought at whatever level suits us best to help others and be open to receive it too.
This is why I posted in this specific forum. Empathy.
Sorry, getting a bit heavy here.
LOL and thanks for the warning! :) Wishing you the best transition possible to your new flat and good luck with your "garage sale", "flat sale" or whatever you English call getting rid of stuff. :)
this is exactly why I adore you mitchypoo. You've expressed my thoughts in a way that I can't. I know we all struggle with these issues. I've lost patience with the progression of this virus and the lack of knowledge.
I'm not speaking for others, but we old farts feel it's time to pass the torch. I'm worn out from dealing this with virus and am tired of it. Sometimes, enough is it
Thanks Greg! I adore you too! (mutual admiration society member) I write better than I speak so beware!!!
(and that's another scary thing to say out loud but I really don't care. Sometimes me bad. I is what I is but always try to improve and keep from putting my foot in my mouth too often. lol) I think many here can put things into words in heartfelt ways better than me too but we all have our brilliant moments. :)
Feeling better today but who knows what tomorrow will bring?
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As to what we English call selling home contents it depends on size of sale and class off individual selling stuff,I am doing eBay and hopping that a design shop will take come
EBay raises most but from past experience can have wildly fluctuating prices.And often involve alot work. There is an another alternate sending all to an auction house.
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Not bad, not even criminal...if it were I'd be in Sing-Sing for life. I'm the opposite. I'll talk about bowel movements on the elevator with who ever is there. Everyone I know, knows I'm on psych drugs. I have to ask my therapist what I haven't talked to him about. Don't know why I'm this way. Probably should keep some things to myself but don't.
Maybe it's my way of making sure no one can hold anything over me. If everyone knows, what's there to talk about behind my back.
As to not being able to open up to your therapist...copy all the stuff you've written on here and give it to your therapist. Tell him/her they have to read it all. You can't seem to get it out when talking to them so they'll have to adjust and read it. Maybe that way they can start prompting you to talk about things more.
Don't be afraid to share. It's sort of like that saying...you can be foolish once asking a question but you can be stupid forever by not asking that question...besides...everyone else around you is wanting to ask/say the same thing...just too shy to do it.
Hope this helps...if not...call me Donkey.
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Hey LTS,
Thanks for the support, advice, and the laughter. It means a lot and, no, I will not be calling you Donkey. :)
It's nice to hear from you. Come by more often.
m.
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Mitch, I think we all try to put on a hard persona because that's what has gotten us through all these years of a lot of misery, bad health, death etc. It's hard to let it down in front of a whole forum. Pm's are great, as is Skype. And the phone.
All I know is, IF I WASN'T DIABETIC I WOULD BE SMASHED RIGHT NOW! Lol.
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Mitch, I think we all try to put on a hard persona because that's what has gotten us through all these years of a lot of misery, bad health, death etc. It's hard to let it down in front of a whole forum. Pm's are great, as is Skype. And the phone.
All I know is, IF I WASN'T DIABETIC I WOULD BE SMASHED RIGHT NOW! Lol.
Thanks Betty,
I guess every once in awhile I just feel the need to be more open with everyone here. I really never did develop a hard persona. Granted, living this long with the "bug" has put some things in perspective but I refuse to let it keep me from being who I am.
These forums in some ways are about hearing honest emotions without fear of being judged. The posts that touch me the most are those that get to the raw truth we are all facing.
I don't have anything against pm's, or phone contact. I just look at them as an extension of the forums.
I wish you could have a cocktail or two now and then too. :)
You and I have had SUCH different life experiences but your presence here warms my heart and others in a BIG way. You certainly never shy away talking about your past drug use. Honesty! That's why I adore you. :)
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I wish you could have a cocktail or two now and then too. :)
You and I have had SUCH different life experiences but your presence here warms my heart and others in a BIG way. You certainly never shy away talking about your past drug use. Honesty! That's why I adore you. :)
Trust me, I was just googling earlier, on drinking while diabetic lol.
We do have different experiences. I could go on about it for eons. Having worked in so many different professions (including the oldest in the world lol) has given me the fortunate experience of not being judgmental with others' lifestyles, drug use, or whatever it is others do. It helps with being a case manager at the ASO. And also helped when I worked with the homeless.
I've had a mostly fun past I believe (other than when I was abducted and raped, and held against my will when 15). My different lines of work have included being a nurse's aide, stripper, hooker, bartender for a biker gang, security at AM General (where they make the hummers), traveling with carnies, fast food, medical transcriptionist, just to name a few. So I've been around lots of different people, with the carnies probably being the toughest group of people. But, it's enabled me to see the world through all different lenses, which I hold dear.
I don't hold back in talking about my drug use, because it keeps me honest. So, if I were ever to come on here and talk about a night of drugging, someone may say, "hey, WTF? You're an addict!" Lol. I don't, however, judge others for their drug use, and a few of my clients are drug addicts. And I treat them the same as any other client, only use a little different language.
Sometimes I don't feel I can bare all here, because of fear of being judged, or whatever. I've read your initial post several times, wondering how exactly I felt about it. It's a good topic, good to bring up, to maybe bond us closer. Thanks for posting it. I love you too.
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Betty,
After reading your last post I admire you even more.
Crazy world (in a good way) that people with a common circumstance who have led completely different lives can develop a bond, online no less. We humans can be pretty peculiar animals.
Wow! What a varied list of work experiences! We DO have ONE past job in common. Fast food. (I worked a week as cleanup boy in a KFC in high school) :P My list of work is short. Retail. Period. (opened my own store in 1987, 5 years post diagnosis)
Abducted and raped at 15? :'(
Judgment doesn't seem to be prevalent here. If it were, the forums would cease to exist. HIV has a tendency to make most of us more compassionate. I am proud of this community and in some ways actually feel lucky to be a small part of it.
Do I bare all? No, but I tend to bare as much as I think others can bare listening to me going on about my latest "crisis" of the moment. (I'll spare everyone from my latest hang nail story. tee hee) Thinking about someone shudder after reading my posts makes me a bit nervous. It does make it more difficult. Just have to keep in mind what Jeff said:
I have to remind myself sometime that its OK to seek support on a support forum .
Thanks again Jeff. :-*
Thanks again Betty. :-*
This has turned out to be an interesting topic due to such wonderful input from everyone.
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Betty, my dearest , what is a "carnie " ?
I first read it as ---canary----- and thought what a interesting wild life job.
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Betty, my dearest , what is a "carnie " ?
I first read it as ---canary----- and thought what a interesting wild life job.
No sweetheart, it's not canary lol. It means a carnival worker. Like have you ever been to a fair where they have all kinds of rides? Carnies are the people who operate the rides, work the fairs. After traveling and living with them (and becoming one), I would never let my daughter ride anything that lifted off the ground. Anyway, that's what a carnie is. :-* Oh, and it is a wild life job.
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Betty I remain in awe.
Much love
Michael
Apol to Mitch for hi-jackette
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I'm always here, Buddy!
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On catching up on this thread it occurred to that this content is useful to the people who are not allowed to Post here .
It is important that we try to as honest as we can about our lives , both as an on going historical resource and as a reminder that yes one can face serious disease, get through it but there are costs .
Last week a UK cancer charity McMillan issued a press statement drawing attention to the Post chemo difficulties caused by the damage off the chemo + the Cancer.
Its aim was to draw attention to the on going needs off Cancer patients post treatment.
And that is what this forum does also , so Mitch good for you for starting it with the honest simple human statement off frailty.
Its a paradox for us battlers is it not , to be strong enough to admit to damage and frailty.
I now glide out off the philosophizing part off the morning and turn my attention to food , because if I don,t I will fall over.
I thank you
Michael
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Hi guys and gals,
Mind if I drop in? I'm a newbie here -- you are witnessing my first forum post -- but an old hand at HIV.
I am just relieved to hear people express their burnout. And I'm just as relieved to find a place where people are free to tell their stories. Even the smallest detail, complaint or joy can resonate with someone. I hope I can get into the swing of things here and join the sharing and maybe find the fun side too. I mean, heck, you even got carny workers!
Seriously, coming from someone just dropping into the forums for the first time, none of your stories are old. No one's a broken record. I'm loving all your voices.
"See" you more in the forums I hope.
Thanks for letting me interrupt.
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I'm always here, Buddy!
Thanks and likewise! :)
On catching up on this thread it occurred to that this content is useful to the people who are not allowed to Post here .
It is important that we try to as honest as we can about our lives , both as an on going historical resource and as a reminder that yes one can face serious disease, get through it but there are costs .
Last week a UK cancer charity McMillan issued a press statement drawing attention to the Post chemo difficulties caused by the damage off the chemo + the Cancer.
Its aim was to draw attention to the on going needs off Cancer patients post treatment.
And that is what this forum does also , so Mitch good for you for starting it with the honest simple human statement off frailty.
Its a paradox for us battlers is it not , to be strong enough to admit to damage and frailty.
I now glide out off the philosophizing part off the morning and turn my attention to food , because if I don,t I will fall over.
I thank you
Michael
Thank you and well said Michael! An honest depiction of our lives is important even if it may not be what the newly infected experience as they age with hiv.
Its a paradox for us battlers is it not , to be strong enough to admit to damage and frailty.
This sentence says so much. Thanks! :)
Hi guys and gals,
Mind if I drop in? I'm a newbie here -- you are witnessing my first forum post -- but an old hand at HIV.
I am just relieved to hear people express their burnout. And I'm just as relieved to find a place where people are free to tell their stories. Even the smallest detail, complaint or joy can resonate with someone. I hope I can get into the swing of things here and join the sharing and maybe find the fun side too. I mean, heck, you even got carny workers!
Seriously, coming from someone just dropping into the forums for the first time, none of your stories are old. No one's a broken record. I'm loving all your voices.
"See" you more in the forums I hope.
Thanks for letting me interrupt.
No apology needed. Glad you found us and yes, this IS a great place with some of the biggest hearted people I've ever met.
Welcome aboard Moxie!
m.
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Mitch
We've got your back. I'm going through one of those "spells," too. Do your best to ride it out but don't hesitate to grip in this and other forums. I truly believe, for the most part, no one, other than those of us who have personally experienced this BS, has any inkling of what a lot of us have gone through, will go through or is about to go through. Even my docs admit they don't really understand what I'm going through. I'll be the first to admit that I really don't know what "normal" feels like anymore.
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No sweetheart, it's not canary lol. It means a carnival worker. Like have you ever been to a fair where they have all kinds of rides? Carnies are the people who operate the rides, work the fairs. After traveling and living with them (and becoming one), I would never let my daughter ride anything that lifted off the ground. Anyway, that's what a carnie is. :-* Oh, and it is a wild life job.
Carnies appear in a lot of Stephen King novels. I was just rereading a John O'Hara short story last night with a shill.
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Mitch
We've got your back. I'm going through one of those "spells," too. Do your best to ride it out but don't hesitate to grip in this and other forums. I truly believe, for the most part, no one, other than those of us who have personally experienced this BS, has any inkling of what a lot of us have gone through, will go through or is about to go through. Even my docs admit they don't really understand what I'm going through. I'll be the first to admit that I really don't know what "normal" feels like anymore.
Mishma, I think I've gotten through my funk... at least for now. Attending AMG Chicago did wonders. :) Know what you mean about not knowing what "normal" feels like. Seems like constant new challenges pop up. Ya, the docs can have sympathy but not too many can have empathy.
Hope you are able to get through your "spell" soon!
Thank you very much for adding to this topic. :)