Pessimism

General Discussion
#1

So my posting activity here has really picked up in the last couple of weeks, and it’s because I recently passed the 1-year mark of quitting Propecia – and it’s really ht me how much of my life has been and is being lost to this. I’ve been pretty aggressive in going after this, but besides getting the very brief restoration of my sexual health through TRT, nothing has really done anything.

What I’m combating now, more than anything, is my own …I dunno, pessimism, I guess. I see recovery stories here, but the protocols are random and often contradictory. I find old threads that seem hopeful, then I realize the date is from like 2009…and they end up being dead ends. I get excited that there’s a foundation and that they’re teaming with B&W for a study – then I remind myself that the study itself will take forever, and if it yields anything encouraging, they still have to come up with proposed treatments, do trials, etc. I’ll be 40 before anything is developed – but that’s IF anything is developed…and then I ask myself: When’s the last time you read about a disease just being solved and cured? The War on Cancer is 40 years old. Look how much they’ve thrown at AIDS, or Parkinson’s, or ALS. Our conditions gets a fraction of a fraction of the attention that those get – and whatever’s wrong with us is probably ridiculously complex. I think of Gulf War Syndrome – have they still not actually figured out what that is? I look at the calendar a lot and I try to remember: Where was I, what was I doing, 2 years ago today, 3 years, 4 years etc. I remember moments, just simple moments, from before this whole mess began, and I long to go back to them. I imagine somehow traveling back in time and confronting myself on the street outside the dermatologist’s office in March 2011, warning myself not to do it, not to go in there looking for a Propecia prescription, saving myself from this future. It’s a Saturday night right now. I get texts from my friends, but I don’t want to go out with them. It’s miserable sitting here alone, but it’s worse with them. They’re living like I used to live, like I can’t live anymore. I can’t describe the loneliness, the emptiness, the regret, the longing…I can’t describe it, but if you’re reading this, you probably know it too. I think of the ones who have recovered – read the posts about their positive attitudes, their determination, their commitment to some exact regimen of vitamins and kale and gluten-free products and cold baths and getting up at 4am. I start to try these regimens sometimes, but get no results and get discouraged quickly. I’m not capable of being single- mindedly optimistic. I doubt everything. I question everything. I can’t have faith in any random regimen I read on here. I fear I’ve locked myself in this trap – shut down my system through stress, anxiety, depression, obsession. But that would be even worse, because even in the happy moments over the last year, it’s not like it’s produced any improvement.

It’s torture to think back a couple of years ago. I was in a relationship, I hung out with friends, looked forward to weekends, thought a lot about the future, life was full of possibilities. It’s torture – but if I think back to those days and focus hard enough, pick a particular moment and really concentrate on it, I can almost feel like I’m back there for a second, that I’ll open my eyes and it will be Christmas 2010 and I’ll let out one big sigh of relief and then set out to make and live the life I should be living now. It’s torture to realize I can never do it, but in that brief instant, I find the only pleasure, the only comfort, the only relaxation I feel anymore.

There’s really no point to this post except that it’s Saturday night and I’m home alone and I’m feeling more desperate than really I’ve ever felt before. I just need an outlet. I want to believe the future is bright for us, but my mind keeps telling me: There’s a better chance they’ll figure out time travel before they figure this out. Sorry to be a downer.

#2

Hey man

I think you’ve done a good job putting this experience to words. Everything in life is cause and effect but with most things, it’s hard to disentangle the web of causes and effects enough to pinpoint why your life is the way it is. This is so difficult because I know why my life is the way it is. I can look back to March 9th and 10th and say with total conviction that those two days, those two pills have totally changed my life. When I see pictures of myself pre-fin I catch myself trying to communicate with that person. I think we all wish so badly for a time machine.

I don’t have any words of encouragement really. Just thought your words were well-put. I believe that I’ll get my life back, even though I have no capacity for faith in any form. I think my thoughts about getting better are more preservationist than anything. I’m in this for the long haul so believing this current reality as unending isnt sustainable. Gotta get up and breath everyday, and the only way for me to do that is to believe this will end and end fairly quickly.

I will say one thing “positive” - I don’t think it makes a lot of sense to think about what we’re dealing with as a disease per se. At least not a disease like ALS or cancer. Those diseases are incredibly complicated inherently but are made even more complicated because of a limited understanding of the causes involved. In our case, we know the cause. We were healthy people before we took that drug and I believe we have the ability to be healthy again. We just have to find the switch. That switch may prove difficult to find, yes. But I think once we find it, we’ll likely be able to turn it back on. Think of it like those who were born without 5ar or something similar.

#3

I empathize 100%, as most here would. You really have done a damn-near-perfect job of summing up the pain of this condition. But sitting at home is misery. It puts you in a comfort zone away from those who don’t understand, but being alone should not be a comfort with this condition. If you have friends that message you constantly, they see your worth, and you do not. Your inability (and yes, often my inability too) to bridge your “former self” and your “new self” is unfair to you. We are all probably guilty of this, but in fact, there should be no distinction. This puts completely unfair expectations on you for who you think that you should be. Don’t always tell yourself you should be funny, insightful, interesting, etc., because the expectations will kill your chances of being that person. Just be whoever you can be that day… your friends will still love you, and if you can get past expectations and self-criticism, you can still find yourself having fun. You are judging yourself way more than your friends are judging you… good friends won’t judge you at all. Friends value friends and their company. Not to mention, their compassion. Be that friend. Be that guy. Be there for people and invest in their lives. If you need to find a reasonable way to “come out” to your friends and describe what you are going through… do so. Don’t let this completely ruin/run your life. It’s bullshit. I fall into this same trap very often, and then when I push myself a little bit more than I’m used to, I see that I still have a lot to offer. I completely understand the days where things just seem dreadful, and you can’t muster up the strength to do anything. But you can’t let those days pile up. Find some way to break the pattern. Patterns keep us mentally trapped in this mess more than we realize. Do keep your head up, because you technically are the same person you used to be. You still have a lot to offer your friends and the world. I promise.

#4

Donkeyboy - Wow!
You summed it up beautifully. I feel the same way. If anything, I’ve become CLOSER to my family and friends since I told them about PFS. Yes - at first they didn’t believe me, or at least were incredulous, but now they know PFS exists and have been supportive beyond measure. Think about it: if one of your good friends got sick, would you stop being their friend? Or would you be even more supportive, etc? Its gotten to the point where we can joke about PFS when I am having a good day. There is no reason now that we have to keep this disease hidden - and my mental outlook has improved 10 fold since opening up about it. In addition, several of my friends have begun donating to the PFS Foundation. So there is that as well.

#5

I appreciate the replies, guys. It really is helpful to know that there are others out there who can understand what this feels like. And I completely get the idea of not retreating within myself – how that will only make things worse. It’s a battle I’ve been fighting for a while, and until recently, I hadn’t been doing that badly, in terms of staying social and doing things. Like I said, something about the futility of dealing with this for a year really hit me recently. I’ve told one friend about this problem. He was great about it, not that it surprised me, but I feel like it’s weird having him know. The part that really bothers me, though, is how hard this has made the idea of finding a relationship. I realized the other day that I’ve been in a handful of potentially sexual situations over the last year. Sometimes I’ve actually tried to do something and have done it, although it’s not felt anything like it used to. Sometimes I’ve tried and haven’t been able to. Most of the time, though, I realize how much effort I’m putting into avoiding it ever getting to that point. I’ve been seeing someone the last few months, but the relationship is fading out right now, and it’s obviously related to sex, or lack thereof. I really feel like once this relationship goes away, and there’s not much left to it now, I’ll have nothing left.

#6

Recentquitter,

I remember how i was the first year i quit propecia. Everything seemed pointless. A few ideas though made it easier to face what happened and all the losses i had. First of all, i am a believer of reincarnation. Reading about the topic was interesting and made me view things from a perspective. I decided that if nothing ever returned back to the way it was i would dedicate this life to develop other areas of my life and personality. To become the best person i could, find and face my personality flaws, become a stronger person, etc. The idea of reincarnation also gave me the ‘relief’ that i will have another opportunity to live everything o lost.
It has been 8 years living with PFS. I ve had a few recovery breaks, in which i was able to date a lot (and i took advantage of it to live the most i could of that side of life). That has relieved a bit of the pressure and guilt of ‘having wasted life’. Thank God i don’t feel a lot of that anymore.
In the past years, i ve learned quite a bit about myself and the world we live in. I am definitely wiser, more compassionate, more caring, more flexible, more tolerant, more assertive, less naive, much much more humble (i did not have this quality before), more patient, etc.
I used to be ambitious, driven, goal oriented, very successful in everything i did - and a little arrogant and somewhat intolerant, vain and attached to body and appearance.
Somehow this disease has allowed me to develop another side of my personality that i did not even think i had. (too bad it was at such a high cost, but hey, what can i do?). The point is, try to take advantage of the situation you are in. That might sound crazy, but being incarnated is a learning experience in any situation. I tried to think that this is a unique opportunity to learn how to deal with loss, an unknown disease, etc. That thought has kept me pretty busy and gave me meaning the last 8 years. Right now i am facing another quest for a meaning to life, as i feel i have explored enough of this way.
So, this first year, read a lot! It will help you not only forget a little bit about what you re going through, and will make you a better person.

#7

Agreed. There’s little financial incentive for anyone to figure out how to fix or mask these symptoms. I’ve resigned myself this is it and try feebly keeping mysel out of profound depression.

#8

Considering the amount of money we are raising and will continue to raise, the scientists do actually have a financial incentive to figure it out. I also do think they will figure out the mechanism. I don’t know about finding a cure/treatment though.

#9

I know how you feel, man. Sometimes the regret is really more than I can take. Just know that there are people who have felt exactly like you feel, been exactly where you are, and eventually recovered or got close enough for it to not be an issue. I know it’s hard to find motivation, especially when you don’t see immediate results, but you have to keep working at getting better. Eat healthy, bust your ass in the gym, try different things that worked for other people. As unlikely as getting better seems, it’s even less likely if you sit around waiting for your symptoms to go away on their own. I know it’s tough but you have to keep at it, man. Read the recoveries in my member story for inspiration. There’s even one where a dude had zero progress for three whole years, tried to kill himself twice, then eventually got better. You have to hold on to hope, dude, or you’ll go insane.

#10

I have had massive improvements the last 2 months, after having marginal improvements for 14 months. I now pretty much think about sex all the time, getting more am/nightime/and random erections. My skin is not as dry, I actually sweated buckets the other night outside and it was 85 degrees. Last year I sat in a car with windows rolled up on a 100 degree day and didnt break a sweat!!! Now in my mini crash periods where I have less sensitivity, I still have the desire to masturbate which is good.

I can tell you one crazy sign that something is happening is these itching spells. I have itching on my arm, leg, scalp, face, eyebrows, and most notably on my eyebrow ridge/forehead…where it was the most red from all this! This has lead to better dreams and better sexual functioning.