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Author Topic: Relating to meds  (Read 687 times)

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Offline Cyborg

  • Member
  • Posts: 5
Relating to meds
« on: January 30, 2020, 04:53:48 pm »
Hey everyone, this is my first post :)

So I was diagnosed back in 2017, around my birthday, which sucked. Fortunately, I was already well informed and had friends and acquaintances who are HIV+, even one who I discovered had a Youtube channel. Finding him there discussing openly about his life gave me strength.

I had to come to terms with the diagnose, which was tricky. Although I reasoned my way on to it, I didn't attend my psyche immediately. The stress built up until one and a half years after I fell into depression. This is not to say I was dealing with it completely wrong, I just needed one on one therapy, and when I got it, things got better.

My first thought was that I just had entered more quickly a stage of relating closely to a medical system in my everyday life, a stage that most people enter into when they turn older: bodies in western society start failing and receive help in the way of checkups and medicines which extend life. I just entered into it at an early stage (I was turning 28 when I got the diagnose). To take a pill a day would need for me to find new rituals in an otherwise quite unstable and varying schedule. I discovered that, HIV or not, this was very important for overall well being.

Another thing that was deeply changed was the way I thought of my body as a self-healing system, something natural that has its own cycles and the ability in most cases to overcome illness by rest, eating well and avoiding excesses. Now I had to rely on a pill to manage the inability of my immune system to deal with this historically new biological entity.

So thinking of myself as a sort of cyborg has been a way for me to transcend an experience of being an "other", a marginal, defective body, and a subject of care, an eternal patient. My biggest fear of HIV had always been to be constantly under medical supervision and being seen as a potential threat. I have been very lucky to be in a country where the medical system works pretty well and have been able to build trust with my doctor.

So seeing myself as a cyborg I can relate my experience of being constantly bio-measured to what people do by their own will in this Quantified Self society, leaving data into a system in the hope that they will get to a desired objective (overall health, kicking habits, bodybuilding, etc.). I see myself as in control of my own health and the constant measures help me reduce stress about little things: as long as the big picture is in order, I can just live my life and make my choices as I would otherwise, maybe even better. I am HIV+ and immunologically enhanced.

This doesn't mean that it's all roses: Quantified selves can also be stressful and disempowering if obsessive impulses take over. I am generally not so keen on technology and struggle with smartphone intrusiveness. But I feel empowered by the fact that I know about this and want to think about ways of combining bodily awareness and self-determination in the digital world.

I wanted to share these thoughts because they might help other people as they have helped me. I would also love to hear if anyone has had similar thoughts and is willing to share and discuss.

And sorry about my english, it's not my native language.

Much love and kisses!


Offline harleymc

  • Member
  • Posts: 1,411
Re: Relating to meds
« Reply #1 on: January 30, 2020, 07:48:55 pm »
Glad to hear you are doing well.

It's good to 'meet' someone else who is open and relaxed about how counseling has helped them. I hadn't used a counselor for several years but last year an acquaintance was murdered, with all the media hoo has that accompanies this events.  It was great to have a couple of sessions at that tough time.

I won't pretend to fully U derstand the quantified self and biomeasurement, but I am glad you have fou d a framework that works for you.
ok the best keep us updated.

Offline lightalltheway

  • Member
  • Posts: 142
Re: Relating to meds
« Reply #2 on: January 31, 2020, 06:59:46 am »

Your thoughts are deep and I must confess, it touched me. I like the way you expressed yourself and how can you define yourself in a bio-power connections and/ or relations.

I do firmly believe that HIV diagnose is a life changing event. Whether for the good or the bad, the choice, in most cases is ours. You are lucky to be surrounded by a high quality medical care system in which provides you with the care you need. In moments of doubt and fear, I like to recall those who are less fortunate, who are living in hard to reach communities and who die because of not being able to take this 'one pill' a day.

Reading about and watching documentaries about the HIV crisis in the 80's and 90's should always make us grateful for all the medical advancements. We learn more about medication, we have better understanding about transmission, and we do have options of protection. This leads me to my 2nd point which is self acceptance and value, things that we are not entitled to betray nor to give over as we have full right to negotiate our personal and intimate options.

Nonetheless, the grass is not greener on the other side. Mental stability and status is of core value in terms of accepting all of this. Personally there are days when I question everything, and there are other days in which what I said above help my fears.

Lastly, I do believe that peer support or one to one counselling are with zero value if the mind-frame is not open to personal adjustment. Your thoughts does not define you; however they can, without fail, betray you.

Light all the way,

Offline MadDog125

  • Member
  • Posts: 103
  • Not today,
Re: Relating to meds
« Reply #3 on: January 31, 2020, 11:57:35 pm »
I can relate alot.  For me the meds were the easy part.  My life revolves around flight planning and timing.  So for me it had to be early morning dosing.  I couldn't rely on being home at set times, or near my med supply in the afternoon.  The trust issue I had early on was thinking I was being sold the rosy best case senario.  I was obsessed with life expectancy by numbers.  I went from the guy who would dip his hand in bleach and wrap cuts with cheese cloth and duck tape to a boarder germphobe.  At the time I was diagnosed with depression aswell.  That seemed paltry, who cares how happy you are if your gonna be a modern leper.  Then the worst hit came.  Medically grounded, the whole pursuit of my adult life rendered pointless. 

The good news it wasn't a rosy senario, it was the common senario.  My cd4 got over the AIDS threshold.  I stopped being sick non stop.  I quit being terrified if I got cut at work (happens all the time). 

Relating to your meds, your not a cyborg your just on a perscription.  A strong one but then if your gonna do it might as well aim high.  My first perscription in my life was AVRS.  The good news for us all is the side effects are much less common and far less severe than they used to be.  We are walking talking modern medical success stories. 

One way or another we got infected,  some were recklessly stupid (guilty as charged myself) others just had bad luck.  Modern medicine gave us a saving throw at life.  Only question is what do we do with it?
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20
12AUG19, cd4 304, VC 51
30DEC19, cd4 385, VC <20


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