What keeps you going?

#1

Many of us are in a dark place right now, and… so am I. My life felt apart because of PSSD. I used to be a student but my cognition is just too bad now so i dropped out. I also have pretty bad dp/dr, low energy, horrible genital pain and emotional blunting. Which make it hard to function. I feel pretty lost in life and i have no idea how to get ahead.

I’m wondering what keeps you guys going? For me it is my dog, my friends, trying to improve my health, learning more about the human body and hoping for more research and awareness for our conditions.

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#2

My respect for myself for going through this and memory of all the beautiful moments of the past. I just know that I owe myself to be cured and have a not limited life again.

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#3

I don’t know, I like to see myself as a bit of a stoic. How much can you take? How much pain is too much pain? I’ll find out.

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#4

No pictures?

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#5

All the same things keep me going too. I also don’t believe in an afterlife, there’s a quote from game of thrones with something along the lines of “death is so final, but life is filled with endless possibilities”

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#6

I am like that too, a stoic, and I can take the pain but pain is not an active force. I still need something to motivate me to go forward. If I kill myself it won’t be because I can’t take the pain, because I can, but because I feel no reason to continue. I have written about this before. I think the worst part of our condition is the lack of motivation, which is a natural consequence of lacking a positive reward mechanism in the absence of libido.

#7

you think our main motivation is our sex drive ? :sweat_smile: i wouldnt. but our cognitive and physical problems make it really hard to function in daily life and when you dont function you dont get rewards …

#8

I don’t think libido is the main motivation (well, actually I do but this is not required for the argument to hold) but I think libido and everything in life that is contingent on libido, which is a lot, tips the balance in life in the positive direction. Without libido the costs and benefits of life can be pretty equal (or negative), which may not be enough to motivate you to move forward.

P.S. I would love to hear from anyone who can refute this argument, as I am looking for ways to refute it myself – so far unsuccessfully.

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#9

What keeps me going? Hhmmm well I’ve experienced recovery a handful of times, so I very much believe complete recovery is very possible, just knowing that I can be better soon is enough for me, but I don’t have many awful sides like many of the less fortunate PFS sufferers.

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#10

Damn that IS a good one. I’m glad I read that, I’m going to try and keep this one with me. Thanks for posting that.

#11

A nice post @snake. The beautiful life I had the prior ten years and who I was before is important to me above all. I am always grateful for it and comforted by it. I do wish I could remember more.

I know too well of the horrible pain and emotional blunting, @Knifli. I myself push through the days, which have all felt like one, with an acknowledgement but never an acceptance of what has happened to me. I did not consent to the risk of this and like most never would. A year and a half ago I chose to find meaning in doing my best to help. I do and will continue to spend every day I’m able doing what I personally can to hopefully contribute to progress towards a better future. Patients, parents and scientists supportive of our efforts have said humbling things to me that show me it is worthwhile keeping on in absence of personal consideration. It is additionally encouraging to know that - no matter how many dermatologists line up to dismiss our lives with low quality publications - the truth is on our side. The speed of biotechnology relevant to understanding the situation is moving very quickly.

Awor’s incomparable effort is a huge support to me. I am grateful for the support of the friend in my life who genuinely tried to understand and has since contributed significantly technically to our projects behind the scenes. Although it is never easy to do, I like spending time with my housemates who are great people.

Keep being brave. It’s only courage when things aren’t easy :slight_smile:

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#12

The first few years were rough for me. PFS hit me literally 3 months before I got married. I’ve never told a soul this, you guys are the first. I was trying to save my hair because I thought it would somehow help me in my relationship with my then fiancé. She knew something was wrong before we married, but we both thought it would pass within a few months. She told me years later that she almost left me several times in that first year because she thought I wasn’t attracted to her. :astonished: We will be married 19 years this year, and I would absolutely die for that woman. If there has ever been a woman that was good to her man, it’s mine.

I knew at some point that things just weren’t going to get better, so what I decided to do was be the best man I could be, despite my condition. Despite the sexual dysfunction, I poured my heart into my marriage, loved my wife unconditionally, did and still do everything I can for her, and put her first and before all of my own interests. We love each other more than we ever have because of that and then as children started coming along, I poured every ounce of energy I could into raising them and doing a good job with it. (as best I could of course)

Due to all of the time spent in taking my pfs frustration and pouring into my family’s lives, we have the title of being a roll model family at church and among family and friends. :grinning: We often laugh amongst ourselves and say, if people only knew the things we’ve been through. If I could take it back, I’m sure I would, but I wouldn’t trade who this has made me for anything in this world.

I hope what I have said is not taken the wrong way. I understand that I am extremely fortunate that my marriage didn’t end like so many others have because of these horrible drugs.

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#13

Thanks for sharing that @alteredlife. I think a lot of people will benefit from hearing that you can make it work with the right person. I feel like I’ve got someone like that at my side too.

#14

What keeps me going:

“Your living is determined not so much by what life brings to you as by the attitude you bring to life. Not so much by what’s happened to you as by the way your mind looks at what’s happened.”

That I have lost everything and have to fight to get it back and I have seen the light many times by doing so. When normal guys with morning wood stay cozy in bed and I get up with a dead penis and hit the gym at 6:15AM when nobody is there, I know that I was gifted with a fire in the belly that nothing can extinguish.

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#15

Interesting that you say this. Even though I donate to the foundation and am of the firm conviction that we need real scientists/ serious studies to try and uncover the mechanisms behind PFS, I do not believe that things are moving quickly in the world of medicine (and many other frontiers). I will be ecstatic if I am wrong about this and since I have no background in medicine I very well could be.

I do not have enormous hopes that we will find a cure any time soon (especially due to the enormous burdensome regulations that make developing a drug for fringe conditions economically unviable).

This brings me back to the question of the OP: I think its important to built a life that does not hinge on finding a cure (of course trying to understand PFS and researching it like axo is doing is tremendous and must be fascinating and I am grateful for it). Finding meaningful work is one way to do it (and how I am doing it). If you are hoping to cure yourself or if you believe that life starts after curing yourself, you might be bitterly dissappointed eventually and wasting your time in the meanwhile. Its something to consider and what alteredlife referenced already.

Just my 2 cents.

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#16

Mark Twain said:

“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.”

If I recover from this crash I plan to enjoy life more and not let ill health stop me. I hope we all get that chance.

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#17

I’ve been trying different herbal/pharmaceutical combinations and get results sometimes… it helps me keep going.

#18

For many years I used to walk dogs from our local animal shelter, because I don’t own one. Those walks were always something to look forward to.

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#19

I couldn’t check-out while my furry life-partner, Chickpea, was dependent on me.

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She would sit proud at the dinner table, thinking she was a person, and would panic when left alone during vacations. Never heard of a cat being so attached.

Unfortunately, she was put down at a young age (for an indoor cat) of 12 years-old this past February due to becoming suddenly paralyzed in her hind legs from a blood clot. She had the look of the terror of not knowing why this happened to her and I totally sympathized with that. I cried hard for the first time in 20 years after she was injected with the anaesthesia, meaning I must have a bit of a soul left in my brain.

Now, I guess I have some delusion about this syndrome getting figured out in the next few years, so I’ll try to hang on for that.

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#20

It’s strange alteredlife, I’ve felt that there isn’t a single thing I wouldn’t take back in my life because it made me who I am except PFS. Every other experience made me a better and a stronger person, however this one turned me into someone that I am not proud to be. However, I feel like I’m working on myself and getting better (personality wise), and hope to have your same outlook soon and of course, for this disease to resolve as well.

Congrats to you and your wife.

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