Does anyone have any idea on how to accept the possibility that my PFS never gets better? How to feel about the dead rubber between my legs and my anhedonia? Should I cut it off? or maybe identify as asexual? It’s just so unbearable I dont know how I can live again. I just want a way to move on. How to deal with having no ambition or desire. If I lose my job I certainly will not be able to get another one. I am not rich, well established and am under 30. Its hard enough for people like that without PFS let alone with it. What kind of life will this be.
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I don’t know either. Every time i wake up in the morning, i feel i lose myself. I didn’t wake up refreshed, Not hard enough morning wood makes me sad too
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Don’t make too much speculation about the future. Just as you and I didn’t expect to be fucking by this broken medicine, try our best to survive and contribute to the upcoming new research. Compared with those Ukrainians who died under the fire of Russian Nazis, we still have a chance to turn over
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bro tbh i rather die with a putin bomb instantly than live this crappy life to the end. if i was in ukraine, i would paint a nato flag and a US flag on my ass to make a good target of myself for russian bombers.
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Somethings you cannot make up. I don’t think science fiction horror movie writers or authors could dream up the nonsense we have been forced to endure. “Fact is stranger than fiction” comes to mind.
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If you think about it rationally, since this condition seems to be of an epigenetic matter, and epigenetic changes are reversible, this condition is in fact reversible. And I don’t mean reversible thorugh a medication made specifically to fix the issue, I mean naturally, as many report to have recovered with time. In fact, if your body had this reaction due to exposure to any of these drugs, I really can’t see why the body couldn’t have the opposite reaction when taking some other thing. Remember that none of your tissues are damaged (only in extreme cases i’ve heard) AFAIK.
And even if you are one of the few cases that do not seem to improve, life is still beautiful and worth living, my man. I’m sure you will manage it and maybe you will cure yourself in the meanwhile, which will put you in an advantageous position over others who had it easier.
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I deleted this post. Was to hard. I think we 50+ connection Laz Mstone Wildmann and me can see it all more fatalistic than the very young ones with the full life ahead.
But the scary thing is really that we made the 6 of 49 inverse lottery jackpot as one of 10.000. This sucks us all from 18 to 67 yo.
If it would be more common and deadly the greatest cartel has to kick something like Vioxx out of the market. So the pfs problem is so rare that the cartel can deny it.
So we have to accept to be fucked down for commercial reasons and to suffer for nothing. That really hurts
But after all, most of us arrange with the condition and live a half accepteble life.
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Adderall has helped me in this regard…I would not be able to function without it.
100% agree with this, the whole experience is surreal.
I have a lot of nightmares about this condition and not understanding what’s happening to our bodies is extremely frightening.
There’s little to no help out there medically for us so it almost feels like we’re in an alternate reality.
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My answer to the topic question is: “You don’t.”
The only reason you would ever need to accept never getting better, is for your own mental health and survival, to be able to live a meaningful fulfilling life despite all the possibilities and opportunities this condition has taken from you. That would be my advice: to try and imagine your life as best as possible despite your losses and to find the thing(s) worth dedicating yourself to.
Other than that, honestly there is nothing acceptable about this situation, and in my opinion we shouldn’t accept it.
No other patient community endures such slander and relentless backlash from entire communities, (entire subcultures even) of people who have some kind of stake (either emotionally or financially) in the incorrect safety profile of these medications.
There’s nothing justifiable about how this patient community is denied acknowledgment, serious inquiry and treatment, simply because some of its implications are undesirable or uncomfortable to others. A lot of patients don’t even care about regulatory goals, they just want to be cured and move on.
While on the topic of not accepting this situation… I would like to remind everyone that the second season of patient story videos is happening. Please contact @sugarhouse if you are willing to speak up about your experience as a patient. This is one of the most powerful things you can do to help the situation.
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Well, it actually reminds me of cyberpunk trope of a character with damaged nervous system. Due to some toxin, drug overdose or implant rejection. Anhedonia and despair. Sounds like William Gibson to me.