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.
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 
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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. 
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. 
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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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.
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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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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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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I’ve been trying different herbal/pharmaceutical combinations and get results sometimes… it helps me keep going.
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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I couldn’t check-out while my furry life-partner, Chickpea, was dependent on me.
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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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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She was so cute and loved you. You gave her the best life you could’ve ever given her. Not many kitties get a life like that.
I moved away from my dogs, and I have a kitty right now. I never thought I’d be a cat person, but she gives me so much to live for. I love waking up to her claw tapping at my nose so I can give her pets.
I also think healing is possible. I get glimpses of it every now and then. Sometimes it’s when I take supplements, other times it’s random. People have recovered on here.
And finally, I’m hanging on because a huge part of my soul simply wants to experience the moment I know I’m healed. I want to feel that moment so bad, and laugh and celebrate.
“Death is so terribly final, while life is full of possibilities.” A cheesy quote by Tyrion Lannister, but it’s true!
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Damn straight! She lived it up to the end. I’ve had other cats in my life but this one was the one. People talk about cats generally being impersonable and independent, but I think it depends on the cat and how much attention you give them.
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Yes; and rest assured, the miraculous cure will come the day after you end your life if you choose to do so. At least that’s how it plays out for me in my predictions.
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Feel you man, it gets pretty damn hard sometimes but this past year I’ve been hanging out with friends and family a lot more - super grateful for them. My mood has improved drastically since I started burying myself in my hobbies. Surfing every week helped ground me for awhile. I started rock climbing with some buddies and the feeling that you might fall really gets the adrenaline going. Climbing motivated me to get stronger so my passion for lifting (after 2 years of quitting from joint pain) has been rekindled.
I still have my sides like low libido but like some others have said, thats not the most important thing. If you’re happy you’re happy right?
A little cheesy but one quote I always think of is from Netflix’s Daredevil when matt murdock says to a kid who just got put in a wheel chair “No one can give you your life back, you have to take it back”
Good luck bro keep fighting!
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Thanks for sharing @Dubya_B this was really uplifting. It reminds me that we are human beings with lives that go beyond discussions about symptoms and protocols.
what a beaut
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I have 3 children which I consider as an extension of myself. that’s what’s keep me going. dying is just not an option.
After I crashed, in the following month and a half, I was pretty much disabled. My friend told me: ‘’ Use it or lose it’’. Since then, I used it to fuel mild anger toward this disease, which I used to motivate me to do the ketogenic / carnivore diet, the exercise, the research on supplements while continuing to work.
Meanwhile, I just accept it as the cards that life has dealt me. Now I try and play the best game with the cards I have.
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Living means we can enact change in the world. If we are dead, we lose any potential to make things better for both ourselves as well as others and the world at large. We, in this group, at this particular point in time, have an abundance of potential for improvement, both for ourselves as individuals as well as for the world.
Why?
Because we are the few, the precious few who understand this condition. We hold wisdom which, if we act correctly and carefully, have the potential to improve the lives of thousands, if not tens of thousands. We know how to show compassion to others who are afflicted by this. We are there when Doctors and other people of authority and expertise in the medical field dismiss our condition as being psychosomatic.
What power we have! We can maybe solve this issue. Think of it! Think of the benefits to the thousands of sufferers as well as the thousands who will suffer in the future.
To end your life prematurely is an act of extreme selfishness, as you as an individual have the potential to give so much. You are irreplaceable, ESPECIALLY considering you are a member of this community which holds such power to enact change and improve things for the voiceless sufferers.
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@Ozeph Could not have said it better myself.
I’ve got a younger sister that has rheumatoid arthritis. She is in pain a lot and it has totally changed her life. Because of her condition, her marriage fell apart. I told her just recently, your life sucks no doubt. But, it’s all you’ve got at this point. Make the best out of what you’ve got and get on with it.
We all agree that we hate what has happened to us. Life goes on. I’m thankful for the good days, I make the best out of the bad ones. I refuse to get on here and be negative and cause more depression. I’m trying to keep a positive mindset that’ll encourage others on here that may be on the brink of suicide. I agree with @Dubya_B, they may figure this thing out tomorrow. In the mean time, I will share what has helped me in hopes that it’ll help some of you as well.
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Its weird because if you get magically cured over night, you would be happy and your quality of life would improve for sure. But you will adapt to this normal state very quickly. I want to have a normal sex life and be able to enjoy that, I dont have many mental sides like brainfog etc. only emotional blunting.