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Author Topic: Just needed to share where I'm at right now.  (Read 3058 times)

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Offline gemini20

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  • Posts: 262
Just needed to share where I'm at right now.
« on: March 29, 2011, 07:27:45 PM »
Sometimes this life with HIV just becomes one big headfuck. Despite 20 years of being diagnosed and thinking I had ‘living with’ down to a fine art, the truth is I’ve been in a pretty dark place in the last month.

I’m not sure if I have experienced burn out; depression; post traumatic stress or a mixture of all or none of those. I’d come back from Australia in mid January and was feeling fantastic, relaxed, re-energised and ready to hit my crazy talk schedule in schools (48 talks delivered in the last nine weeks).

I was doing well, had been 100% adherent to my meds, was working out in the gym and generally enjoying life.

Then a combination of events coincided to completely throw me off track to such an extent that I did momentarily think of jumping off a bridge, but realised that I am too much of a control freak to go through with that so I took the only other option I know to cause myself harm which was to stop taking my meds.

In the past I have taken treatment breaks which were planned and done in consultation with my HIV doctor, this time it was different – I just saw not taking the meds as the only thing I could take control over when everything else seemed to be out of control.

I’ve now been off all HIV drugs for a month now and while part of me knows I need to restart and get back on track, there’s a very large part of me that thinks what’s the fucking point? Part of my current warped thinking is that if I become ill I will at least ‘feel’ something again because at the moment I am emotionally numb and appear totally disconnected from myself and others

I had lined up an appointment on Monday with the mental health team attached to my HIV clinic but I got a call that morning to say it was cancelled as the woman was off sick…and no alternative was offered…that pissed me off because I’ve recognised I need help to get my head into a space where I can restart my meds and now I’m having to wait!

Not really sure what the point in posting this is…I guess I just needed to acknowledge what was going on for me as keeping it bottled up inside was just adding to the powder keg.

Thanks for letting me vent,


Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline WillyWump

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  • your ramblings bore Yamaguchi Kitteh
Re: Just needed to share where I'm at right now.
« Reply #1 on: March 29, 2011, 07:35:00 PM »
Emma, sweetheart, I'm glad you're a control freak as you're doing too much good in this world to be thinking about jumping off of bridges.

That's a pretty hectic schedule. Maybe you should take a break from your speaking engagements and make time for Emma, you know, kinda reset yourself or recharge. ;)

Glad your working towards getting back on your meds.

Hugs

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline hope_for_a_cure

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Re: Just needed to share where I'm at right now.
« Reply #2 on: March 29, 2011, 07:46:29 PM »
Then a combination of events coincided to completely throw me off track to such an extent that I did momentarily think of jumping off a bridge, but realised that I am too much of a control freak to go through with that so I took the only other option I know to cause myself harm which was to stop taking my meds.

In the past I have taken treatment breaks which were planned and done in consultation with my HIV doctor, this time it was different – I just saw not taking the meds as the only thing I could take control over when everything else seemed to be out of control.

Thanks for letting me vent,

Your post is quite upsetting to read and I am not in a position to advise on specifics but will say this:  The unrelenting schedule you are keeping as well as other issues (not obvious to the reader) are taking a toll on you.  Venting here is one thing, but also speaking with a professional who can help sort out why you are feeling this way may be better.  

Edit to add:  Willy's post sums it up better... I was typing this out and did not see it in time.  Sending you my best!
« Last Edit: March 29, 2011, 07:48:30 PM by hope_for_a_cure »

Offline GSOgymrat

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  • Posts: 5,009
  • HIV+ since 1993. INTJ
Re: Just needed to share where I'm at right now.
« Reply #3 on: March 29, 2011, 08:52:58 PM »
I am going to just be direct: you sound very depressed and your situation is serious. Please contact your clinic and tell them you need to see someone ASAP. Keep us posted on how you are doing.

Offline ds4146

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  • Posts: 317
Re: Just needed to share where I'm at right now.
« Reply #4 on: March 29, 2011, 09:21:56 PM »
Oh hell you just didn't steal my post......but honestly I am feeling that today, okay yesterday, and the day before. My theory is get through one day at a time, and no I am not in AA but I can relate. I remember reading your story and seeing your beautiful picture not too long ago and was thinking, "you too could do something meaningful" meaning myself, I was so jealous! Take a clue from the "rat" and do what I did today, started some therapy, well next week, but knew I needed a "tune up"! Wishing you a smoother road soon and hope to see you there, just don't hit me! Take care.

Offline Robert

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Re: Just needed to share where I'm at right now.
« Reply #5 on: March 29, 2011, 11:39:52 PM »
hi emma

well, I know where you are right now.   Time and friends and chocolate or ice cream or whatever it is that tickles your fancy will help get you out of this deep funk.  Some time back I had an appointment  with a support group and when I showed up the doors were locked and the lights off.  I didn't want to admit that I might have gotten the date wrong but thinking I did just added to the deep depression I was ready in and ready to walk off a cliff, any cliff would do.  But I got through it and you will to.  Knowing that we're here helps, that's for sure.

robert
..........

Offline MarcoPoz

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  • Posts: 396
Re: Just needed to share where I'm at right now.
« Reply #6 on: March 30, 2011, 08:31:10 AM »
Emma,

Hang in there.  Keep seeing a mental health counselor.  Keep taking your HIV meds.  Now--don't get pissed at me for this, but you might want to reconsider how many talks you give--or even if you should continue doing these right now.  Standing up in front of strangers, repeatedly sharing the emotional, intellectual, spiritual and physical issues of your live with HIV is NOT always a healthy thing.  I know--been there, done that, got the scars to prove it  ;)

Offline carousel

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  • Posts: 821
Re: Just needed to share where I'm at right now.
« Reply #7 on: March 30, 2011, 11:54:47 AM »
Hey girl, one minute you're working the new enhanced bangers and then all this?

Sorry you're feeling the way you do.  Not quite sure what to advise, though just coming off the pills is a bit stupid, but then it's not for me to judge.

I understand the frustration about the mental health person.  Did the bitch not realise how inconvenient they're missing the appointment was?  Of course, they probably didn't think that while they were catching up on day time telly in their sickbed/ sofa.  If it was me, I would ask to see somebody else, because I know there would be resentment on my behalf and not being there for the first appointment is not the best way to start a therapeutic relationship.

Have been going through a very dark period myself, tired beyond belief, constant stomach upset and moody all the time.  And then last week, just for a moment, flash in my head, the thought that I've just had enough of it all.  It was really scary, because that's not really me, well except the moody bit.  I also stopped drinking and rather than feeling better, I've just been so ill.   But that's my shit and this is not about me.

You know that I am at the end of the telephone and you're welcome to come round and have a cup a tea and a chat.  And promise won't talk about myself (too) much.

Oh and don't through yourself off Chelsea Bridge.  The idea of your body bobbing up and down the Thames is just insufferable.

C xx

Offline Joe K

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  • 31 Years Poz
Re: Just needed to share where I'm at right now.
« Reply #8 on: March 30, 2011, 01:39:34 PM »
Sometimes this life with HIV just becomes one big headfuck. Despite 20 years of being diagnosed and thinking I had ‘living with’ down to a fine art, the truth is I’ve been in a pretty dark place in the last month.

Not really sure what the point in posting this is…I guess I just needed to acknowledge what was going on for me as keeping it bottled up inside was just adding to the powder keg.

Dearest Emma, I have been where you are now and I am telling you that you need to find some help, now. I am alarmed about how cavalier you are about stopping your meds and to me, it seems like an attempt as a blameless form of suicide. You know what will happen if you do not resume your meds, so you better make up your mind on whether you wish to live or die. Believe me, there are people who can help you now and I urge you to call your local suicide help line. Please do not discount, or worse, ignore how you feel, because your emotions have real world consequences.

I think you are an amazing woman and I hope that you believe that you matter, because you do. You can get through this, but most certainly not alone. Please talk to someone now. I know you can do this and if I can help in any way, please let me know.

Joe

Offline AlanBama

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  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: Just needed to share where I'm at right now.
« Reply #9 on: March 30, 2011, 02:17:58 PM »
Honey, I'm worried about you; going off your meds so that you may become sick and "feel something" is a really bad idea.....take it from someone who knows.  You will 'feel something', all right....and you may find yourself harmed to such an extent that you might never fully recover from it.  I am not trying to judge you here, just being extremely concerned for your well-being.

I join in the chorus here, asking you to please get some help a s a p.

Love & hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline gemini20

  • Member
  • Posts: 262
Re: Just needed to share where I'm at right now.
« Reply #10 on: March 30, 2011, 03:25:00 PM »
so you better make up your mind on whether you wish to live or die.

And that's the crux of the matter Joe...at this moment in time I have no desire to live long term with HIV anymore.

you might want to reconsider how many talks you give--or even if you should continue doing these right now.

Thankfully my schedule does lighten up as the Easter holidays arrive but as I am self-employed I find it very difficult contemplating saying no to work because that income is all I have to live on. I'm more concerned that now I will have some down time I will actually have too much time on my hands to 'think' which is probably not a good thing for me right now.

I saw my HIV doctor again today...he's fully aware of what's going on for me but obviously he can't physically make me take the pills again.

I appreciate everyone's concern and thank you for your thoughts, advice and suggestions. Of course I know I need help, believe me I've tried to get some in the last few days but there are just no immediate doors open...nothing like a waiting list or staff member off sick when you are in crisis.

I will keep trying to get through this...only time will tell if I succeed.

Thanks again,


Emma


Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Cliff

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  • Posts: 2,645
Re: Just needed to share where I'm at right now.
« Reply #11 on: March 30, 2011, 05:15:29 PM »
Emma, I hope you can get in to see someone soon!  If you need to be off meds to feel again, then so be it.  I hope you get some feeling again.  But you gotta get back on soon, hun.  A pint (sadly, seems to be my only option of helping others)?  Or better yet, fajitas and cervesas at mine again? 

Offline Cliff

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  • Posts: 2,645
Re: Just needed to share where I'm at right now.
« Reply #12 on: March 30, 2011, 05:16:05 PM »
And stay away from the cock, me thinks he doesn't help things much.

Offline drewm

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  • Posts: 1,072
  • I have a sling and a dungeon :-P
Re: Just needed to share where I'm at right now.
« Reply #13 on: March 30, 2011, 05:38:56 PM »
Emma, get in to see a mental health pro ASAP and don't take no for an answer  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Theyer

  • Member
  • Posts: 2,494
  • Current ambition. Walk the Dog .
Re: Just needed to share where I'm at right now.
« Reply #14 on: March 30, 2011, 06:11:06 PM »
Hope things are beg[nning to steady Emma , take good care
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline heartforyou

  • Member
  • Posts: 1,103
  • I must be a survivor in many ways...
Re: Just needed to share where I'm at right now.
« Reply #15 on: March 30, 2011, 06:23:29 PM »
Emma,

You got this belgian chocolate up and awake from hibernation.

Know that I think you are a wonderful person... just think you hit a realy rough bump in the road called life...
I hope you can see someone soon and discuss help.

Hang in there girl .... I am  thinking of you.

ps And yes... I stood at many "cliffs" in my life... but always got rescued, so make sure you yell loud enough so we can come to your rescue.... xxxxxxx Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline gemini20

  • Member
  • Posts: 262
Re: Just needed to share where I'm at right now.
« Reply #16 on: April 17, 2011, 06:45:47 PM »
I thought I would just post an update on what's happened since I started this thread

I never did get an appointment with the mental health team; though did get offered an hour with a health advisor. While it was useful to have somene to talk, a one-off appointment was never really going to do much to help me out.

So ultimately I realised the only person who was going to get me out of this funk was myself; nothing like kicking yourself up your own arse so to speak.

I think having a break from my relentless schedule gave me the time out to get everything back in perspective and thankfully I do feel that I am now back on track (but just in case I wobble again I’ve just booked my flight to Sydney for Christmas again as an incentive to keep going).

I restarted my meds last week after a 5 week break; got bloods done mid week and fortunately the impact from my time off meds wasn’t as bad as I feared with my cd4 count only dropping from 562 to 396; viral load not yet back but I expect it will soon be undetectable again.

Hopefully the coming months will be a much smoother ride and if not I hope that I find an alternative strategy for coping the next time that doesn't involve bridges or stopping meds.


Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Just needed to share where I'm at right now.
« Reply #17 on: April 17, 2011, 06:56:12 PM »
I'm sorry to hear that you haven't gotten more of the help you might have wanted; but I'm glad you're taking charge of trying to work things out. Me and the boyz have been very concerned about our friend across the pond.
:-* much love to you from me and boyz
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline drewm

  • Member
  • Posts: 1,072
  • I have a sling and a dungeon :-P
Re: Just needed to share where I'm at right now.
« Reply #18 on: April 17, 2011, 07:00:18 PM »
(((HUGS)))
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Theyer

  • Member
  • Posts: 2,494
  • Current ambition. Walk the Dog .
Re: Just needed to share where I'm at right now.
« Reply #19 on: April 17, 2011, 07:59:39 PM »
Hello Emma ,good to hear your news.
RE>getting more help from MH team, it should be pos.to get cog-net time limited therapy throe the NHS {forgive me if i am mistaken in your being in UK] These one off sessions  should be assessments leading to offers off help. At least that's the theory .
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline heartforyou

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  • Posts: 1,103
  • I must be a survivor in many ways...
Re: Just needed to share where I'm at right now.
« Reply #20 on: April 18, 2011, 02:33:09 AM »
EMMA  :))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline hope_for_a_cure

  • Member
  • Posts: 1,502
Re: Just needed to share where I'm at right now.
« Reply #21 on: April 18, 2011, 10:55:29 AM »
I think having a break from my relentless schedule gave me the time out to get everything back in perspective and thankfully I do feel that I am now back on track (but just in case I wobble again I’ve just booked my flight to Sydney for Christmas again as an incentive to keep going).

I think its always nice to have something in the future to actually look forward to doing.  Glad to read you are feeling better!


Offline WillyWump

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  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Re: Just needed to share where I'm at right now.
« Reply #22 on: April 18, 2011, 11:25:22 AM »
Emma, so glad you are back on track with the meds. Keep that chin up sweetheart   :)

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline GSOgymrat

  • Member
  • Posts: 5,009
  • HIV+ since 1993. INTJ
Re: Just needed to share where I'm at right now.
« Reply #23 on: April 18, 2011, 11:33:46 AM »
Glad to hear things are getting better.

Offline carousel

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  • Posts: 821
Re: Just needed to share where I'm at right now.
« Reply #24 on: April 18, 2011, 12:09:13 PM »
Hi Emma

Glad to hear that things seem to be settling down a bit, we were a bit worried you were going just a little bit doolally.

I do think a bit of therapy wouldn't go amiss.  I am not sure that you are going to find somebody who has specialised knowledge of long term survival, but it kind of sounded you needed to see maybe a Clinical Psychologist or experienced Psychotherapist rather than just a Health Advisor.  I'm sure they do a great job, but it seems more about wearing a cardy, have a concerned look on their faces and going there, there, it's going to be all right.

I know there are cuts, but I am rather surprised that a hospital like the Chelsea and Westminster can't come up with something better than that.   The bitches.

C x

Offline Cliff

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Re: Just needed to share where I'm at right now.
« Reply #25 on: April 22, 2011, 12:14:40 PM »
Good update Emma!  We had pre update drinks, now we need to follow-up with post update drinks. 

Like practically everyone in this country, I'm off for the next two weeks.  C, are you in as well?

x

Offline sam66

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  • Keep The Faith ; Fight The Fight
Re: Just needed to share where I'm at right now.
« Reply #26 on: April 22, 2011, 02:20:10 PM »

 Emma,
          Thank you, to you and other LTS, reading about you and all your posts have given me the strenght to cope with our unwanted friend.
    Thank you Emma for the advise you have given me in the past.

     I'm sure you will get over this bump, dont give up the fight 
december 2007 diagnosed +ve ,

 


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