The First Dance

Member Stories
#9

Let’s set up a few little steps I can take to at least try to get out of this fucking shit. I’ve spent the past 3-4 months lying in my bed all day long watching Netflix and YouTube. Too depressed to even think about anything else.

  • Starting by tomorrow, I’ll resume fast walking, I’d say 30 minutes every day. My phisycal shape is bad. Like, very bad. Let’s start from here.

  • I’ll cut gluten and dairy again. I went for a solid 8 months without both of these products and the results were pretty good. But when I’m depressed is just easy to find comfort in food. There’s no doubt eating right plays a role in my condition. It’s not that drastic, but definitely noticeable.

  • I’ll force myself to work more.

  • I’ll sunbathe. My Vit D was pretty low, and since I’ve responded very well to Vit C before, I hope it was not a one time thing.

Obviously this is just basic stuff. The next step will be supplements, which I’m deadly scared of.

Just for the record, the only three I took were:

  • Vitamin C 500mg a day in october fixed my nails.
  • CoQ10 60mg, gave me dark urines, which I was told was “a sign of detox” (actually not sure about it)
  • Probiotics around one year ago. Felt very little.

Well, that’s it.

#10

Another rant update.

It’s incredible how my life gets worse every month, every week that passes by.

I’m not even sure I can call my friends “friends” anymore. Haven’t seen them in 2 weeks now. Today we were supposed to hang out together, and I’m quite sure they’ve used the fact that my brother tested positive for Covid 9 days ago (he’s been in quarantine since) to ask me not to join them, despite I tested negative and have no symptoms.

I’m growing resentful. Feelings of vendetta are soaring and I think it’s going to bubble over sooner than later. This summer is going to break our relationship completely.

I can’t stand the way I’m being treated. Can’t stand the dynamics of our relationship. I’m falling a little by a little in that panic position when you feel you have no control over the situation and you’d do anything to gain some of the control back. Or, to hurt people you feel you’are being hurt by (EDIT: I don’t mean physically).

I couldn’t even say how my condition is going.

Cognitively I’m still in deep shit.

Sexually, it varies to such a degree it doesn’t even make sense to talk about. Last days have been kinda good. Mood affects my symptoms quite a bit. But my mood is always shit.

I spent 23 hours per day at home. Don’t have much in my life. And I’m losing what I have by the day. Family situation is messed up. Everything is messed up.

The whole situation is shit. And at times I get very, very close to put an end to it.

There’s not one single thing I can gain pleasure out of.

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#11

Do something useful for the betterment of yourself and others. I built a stool from scratch for a family member last week who needed a small one. Be useful.

#12

That’s exactly the point.

I have no way of doing it. Prior to this ordeal there were dozens of reasons to spend time with me. And I had multiple elements I could base my identity on. Plus, despite dealing with depression I had ways to find pleasure.

Everything is now gone.

I’m failing at readapting.

#14

You can be useful without experiencing pleasure. I don’t feel pleasure but I still know what’s useful to pursue.

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#15

I try every day.

I’ll keep trying.

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#16

How severe is your testicle/penis shrinkage? Does it vary day by day or stay constant?

Save for the genital atrophy, it is very possible that your symptoms could potentially be due to anxiety/depression. The mental issues you are having sound very similar to when I was struggling with severe anxiety/depression. My mental abilities declined to where I thought for sure sleep apnea had caused a hypoxic brain injury.

It could also be a complex issue where some sides are fin related, and some are anxiety depression. I think the likelihood of at least some symptoms being not from PFS is increased by the fact that it took 9 months before the crash (unusually long amount of time but not unheard of) and you mentioning it all starting with a major stressor in your life. Of course knowing depression/anxiety could be a big part of it doesn’t fix the problem, but it would certainly be much more hopeful and actionable if that were the case!

#17

Penis, it varies. Testicles I couldn’t say. It probably varies too.

I do struggle with severe depression. Anxiety not really. Not because I’m not an anxious type, but because after developing PFS I can no longer experience it. I used to get both mental an physical anxiety. Now I can’t even remember how it feels like.

Before PFS depression was bad, but anxiety was worst.

After PFS depression in unbearable, anxiety is virtually unexistant.

But I do have severe mental issues for sure, which factor into the equation. And I know they worsen some of my symptoms, but apparently they also prevent other issues from hitting full-blow. I’ve had proof of this a couple of times, when I would “relax”, and some symptoms got way worse.

It is certainely both, but I couldn’t say for sure where PFS ends and “mental” sides begin.

Quite frankly I’m holding out hope that my condition could “just” be a bunch of symptoms aggravated by the stress, without the underlying genetic / autoimmune / whatever condition.

Situation’s bad.

#18

I just found out my “friends” hung out without me.

Without telling me anything. Pretending they were each doing something else. And the saddest part is, I’d definitely found out earlier if my brain could work properly.

My father won’t talk to me, same for my brother.

I’ve never felt this alone my entire life.

I hope this situation find its end soon. The pain is gettting unbearable and I don’t see any way out.

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#19

I’m so sorry to hear that man. Do you have any particularly close friends you think you could hang out with, separate from the entire group? Might be less stressful for you.

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#20

@TFD that’s very sad but all too common. It rips ones heart out and is as bad as any of the sides. I took up volunteer work to try to build a new base. I only do one afternoon now as that’s all I can manage but I get to meet new people. You could also look to join social groups in the community which I suspect are not the available right now. It’s a really hard pill to swallow and still upsets me immensely but you’ve got to try to carve out a life to suit this disease. If you recover all of your friends will come back and you’ll forgive them. No one signed up for this.

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#21

No. I’m in a paradoxical situation where I don’t feel like hanging out with people, but I don’ want to be alone.

I don’t even know how to explain this, the simple act of talking to people can at times be mentally draining.

3 Likes
#22

I have a whole lot of other problems. I don’t think I’ll be able to make new friends.

I don’t feel like doint it, and anyway I’m such a empty body it would be very difficult.

Can you believe it? Not even 24 months ago my friends described my humorism as “a gift for everybody around you”.

I miss myself so much.

#23

Another confirmation that stress, in my case, has a major role in this stupid fucking condition.

Today I had problem sleeping, cognitively I’m very low, erections are softer.

Jesus Christ, prior to PFS my stress tolerance was so strong not even being kidnapped could leave me like this.

#24

I relate to all that. I had a massive circle of friends I was sought out by people. I was the entertainer. I miss being around people so much yet I can’t be around anyone. It feels uncomfortable I don’t connect on any front. Everyone I knew feels like stranger. I put on an act and get annoyed by discussions I once generated. It’s crippling!!! A disease that hits you so hard and takes everything. Something like this could only be man made. You still have time to recover try to hang in to that. We all need a glimmer of light/hope.

#25

Thank you guys. I’ll carry on.

1 Like
#26

@TFD @maxim117 Hanging in bed with fatigue ist like Opium, a poisn that makes us weaker and weaker. I have been hanging in bed for three months too now.
But I try to get off for a few hours every day. Make a little walk or a little swim in our lake when sun shines.
Even @LazarusRy beaten longer and by more siteeffects than most of us Stands up and goes outside the House.
Bedbound, muscles get weak, muscles get lost, armes and legs get cold and numbness, the last bit of health and last remaining drive get lost. (And pfs head TV starts up with the suicidal dreaming chanel, someone visits me with a pistol…in my old live I Had only sexuall head TV, what a Shit)

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#27

Positive

  • I had some sort of “empy” spot in my mustache which filled in, and same thing with my beard. If I had to take a guess it’s still probably a little different maybe, but it’s much much better than 1 year ago and totally normal looking.

  • Eyebrows and beard had gotten very, very dry last year. It’s now much, much better.

Negative

  • Social life is at an all time low. It’s getting very hard every friday and saturday that go by to watch people having fun.
#28

This is where the CD protocol has been helpful for me . If you have set things you do every day even if it’s all health stuff to try to beat this your mind stays occupied .

Stay in bed for 10 hrs as long as your at least getting in and out sleep a majority of the time

Get up take a cold shower

Eating a paleo based diet takes time because you are always cooking chicken, steak or fish . This to me feel time consuming

Have a set work out time. Being too tired is just an excuse . You can work out regardless of how tired you are . As you go you gain energy

Read these forums unless it’s making things worse for you . It’s info and takes up time . I know some people are bothered by being on these forums. I’m not personally. Info helps

Don’t worry about friendship or relationships. With out a proper sex life it’s not possible. Of course it’s going to negatively impact everything including things with family . At the end of the day it’s not your fault . So let it go and don’t feel guilty about it . True friends and family will always be around to at least some extent regardless of your situation and if they are not around at all then just say screw em and never look back .

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#29

For the first time in over a year, today I’ve done 20 minutes of stretching, mostly focusing on the legs. I feel that my erections now are a little weaker, and the connection with my genitalia during masturbation has diminished a little.

Maybe it’s a case, but what the fuck.