I’m losing hope

Sorry guys,

I’m trying my very best to stay hopeful and positive but today I’m failing.

I lost the love of my life, I lost my hair, I lost my sexuality. Today I can’t cope anymore. I lost my will to live because any life I’ve had is long gone, with no bright future ahead. None of my friends and family really understand the true horror of what we’re going through.

I’m more than 1 year off the drug. Never thought I’d still be in this shit by now. I guess the fear of real “permament” sides is overcoming me.

Courage to you all.

Just had to vent.

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Hey man I hear you, I do.
There are days where this will mentally and physically get the best of you and we all understand completely. All the thoughts and feelings this brings on are valid…But giving up is not.
Trust me, believe me…my mind and soul have been down that road way too many times than I care to remember…yet I’m still here and many of us are.

Things can and do get better. And who knows what advancements in medicine or technology can bring.

This time last year, I could barley move, my vision was blurry as hell. I had symptoms that I never experienced ever! No emotion or feeling whatsoever. I couldn’t sleep and whatever sleep I got offered no rest or relief at all. Pretty much everything in my stopped working. That was truly the scariest thing of my life. Yet some how, I recovered and I’m still here

I remember thinking if I could get out of this then there’s hope for many.
Stay with it. You’re only as strong as your worst day.
And if you’ve ridden some bad days then you got more guts and life left.
We’re here. And so should you be.
Peace my man. Be well

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@Crembo this is one fucked up disease mate, every single day feels like an eternity in hell where we lose almost everything along the way. However you have a lot to hang on to :-

Firstly you could well recover, lots of guys do

Over these last few years I’ve been in contact with quite a few who contemplated the end, catastrophized daily, and thought about nothing but the devestation of PFS. Everyone of them is still here and most are now in a better position.

Secondly, you need to know and believe that you will get better always hang on to those thoughts, YOU WILL GET BETTER, do what you can to banish the demons, distract, go for walks, take in the scenery, do different things you have to give your mind something else. Routine allows for rumination which is Pfs fuel. I have given up many times toi!!!

Thirdly, coming out the otherside, you will feel so lucky to be in this world, you wil never take the basics for granted again, laughter, love, happiness, wellbeing, etc. You wil savour every moment. Every day will feel so special after experiencing this.

For this , it’s never worth throwing the towel in., God is with all of us, he has plans and it’s not to die from Pfs its really not.

Perform acts of kindness, holding a door open, showing those less fortunate a bit of attention, talking to a vulnerable person, smiling at people who feel invisible. Etc. Is free and It’s amazing how these actions can make a difference to another person’s life as well as yours.

We will be better human beings because of this. . Suffering brings strength.

Stay strong man and hang in to the hope of better days. :heartbeat:

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@LazarusRy word brother !! :pray:

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Thank you for your kind response, friend.

It’s pure survival, right now. Maybe that’s enough. I could live with this knowing it will get better, but I can’t live without hope. And there’s only so much of it to go around.

Thank you again. Your support means a lot.

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Thank you so much, friend. Your support means a lot. I will do my best to truly believe in recovery.

This disease makes or breaks. I want it to make every single one of us. I pray for it to be a blessing in disguise. A dark night of the soul that leads us to profound meaning and content.

Thank you again, from a lost soul somewhere on this earth.

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Hey man, I wanted to share with you the video that helped me the most when I was at my lowest. The message shared is not to discredit the things you have lost, what you have been through is terrible and I am truely sorry for everything you’ve lost, but you need to get into the right state of mind for recovery. Adopting the following mindset is what has helped me say strong and helped me to keep pushing forward. You will get better man, hang in there and never give up.

And another one of my favourites.

Last one.

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Thanks, Alex! Good videos, really helped calming me down somewhat.

There have been good days, but then I get dragged down again by fear and hopelessness. I’ve always had this negative mindset before, so it really is a mental battle with myself.

If you’re looking for inspiration, I highly recommend Health Recovery’s videos. The fella was severely ill, way worse than we have it, with severe CFS / ME, Fibromyalgia, was suicidally depressed, for 8 years of his life, to the point where he didn’t leave the house in years. If he managed to pull himself out of that hole, you can do it to, his channel is essentially a documentary of everything he did to recover. It is honestly a gold mine for people in our situation. Finding his channel, listening to his videos and implementing his advice was truly the turning point in my recovery. Although you don’t have CFS / ME, the advice is still applicable and I can’t recommend his content enough. Stay strong man, keep pushing forward and never give up.

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@Alex50 Definitely going to check it out asap! Thanks for the recommendation :slight_smile:

It looks like you are only 32. I would make a 10 year plan like Jordan Peterson future authoring approach and just busy yourself with the time-consuming aspects involved in that plan for the next few years and try to make lemonade out of lemon that way. So if there is some skill set you could be expert at just devote yourself too it for now and forget about women for time being. 32 is still very young, seriously, not just as thing people always say. It really is. With this approach, you could end up better in long run than if you had never gotten PFS. Key is that you are still young.

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Losing love, hair, sexuality is all ok untill u are functional and not disabled. Just be happy with whatever u have. Do u know, many people can’t even get out of their bed due to pfs? Sexuality and all that matters nothing, just look at monks, will u ever have the peace they have even if u didn’t have pfs? Just be happy with whatever u have that’s it. There’s nothing more we can do.

@FinDestroyedMe I appreciate the feedback, I really do, but I’m not here to measure our symptoms. I know some have it worse. There are always people having it worse. It does give some perspective but it doesn’t take away from the suffering.

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Don’t lose hope mate. Read my last few posts in my thread:

I really hope that my regimen helps everyone else on here.

Man, I’m sorry you’re going through this shit but it does get better even if one year has passed already.

  • Did you get a hormonal profile?
  • Vitamin D tested?
  • Microbiome analysis?
  • Adopted a healhy lifestyle and diet?
  • Managed stress?
  • Started working out?
  • Stopped everything including all supplements; vitamins; minerals; etc.

Hope will always be there. Hang in there!

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Is supplements like calcium, magnesium, vit C, vit D bad for us? I’m using them

i have these days too where i lose hope but you have to just make a mental note of how you feel and what the situation is and then focus your attention on something else.

i dont believe in preaching but i really think it would benefit us all if we could all focus our whatever bit of energy and attention left on improving our lives in certain way preferrably one that helps us individually and collectively.

for example if you had financial goals then you would be able to stay busy in making more money. that would help you and it would help us by having another person thats able to contribute a little more to the research

anyway, just a thought. like i said i dont believe in preaching but even if we have 5 more guys doing that it would make a drastic difference at this point and it would keep everyone busy on something positive to make gains on

Try and stop everything for now unless it’s proven you have deficiency through tests and this includes vitamin D. I’ve learned the hardway that taking individual minerals or vitamins results in more imbalances. That said, I sometimes take low dose Vitamin C (100-200mg/d) to help with excess inflammation symptoms should they occur.

Hormones are “OK”, vitamin D lowish but OK, no microbiome, lifestyle is good, diet is good, working out where I can, not doing good on managing stress. Trying to control it, but once it hits me nothing’s changed in such a long time, I become extremely anxious to the point of being suicidal. Like I can’t breathe.

You’re right, of course. But it often remains just that, a distraction from the relentlessness of the shit we’re in. Thanks for the feedback, though. I appreciate it.

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