Sudden realisation(trigger warning)

Kitty said:
I got ill in the mid-70s,
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Late 60's through the early 80's was a very strange stretch, with some very peculiar and disabling diseases emerging. Certainly not keepsake days for the likes of the CDC and NHS.

Makes one wonder what kind of water was going into what kind of cool aid.
 
I just struggle to accept that I asked for help so many times and was convinced I was physically ill in spite of them, and then my GP gaslit me and was convinced that I was depressed etc just once and excercised and now my life is destroyed forever and my partners (same infectious trigger, moderate functioning) and I'll never really walk anywhere but the bathroom again. It's too much. If it's really a lottery maybe I'm not as strong as you all. I had dreams and I can't let them go even through I tried. My pre ME life was a nightmare too. How could this be allowed to happen over and over? It's too much. It's too fucking much.

I'm glad that you have all made peace with the idea. I can't accept this life. You are all much stronger than me.

I am not psychologically capable of being this ill. I was moderate for a few months and could sort of manage that.

I was not a runner and I ran. I did yard work. I moved house after crashing to moderate. Became severe. No one paid me. I was privileged, I didn't need to. I could have lived the rest of my life mild and now I'm ruined. How can this be allowed to happen. I'm not naive but I'm still shocked.

A treatment that helps me somewhat is the only thing I have to live for. If that truly isn't coming, I have no reason to live.
 
I'm sorry to hear you are struggling so much, VRT. It can take a long time to find a way of coping with being so sick. It doesn't mean you are not as strong or as valued as anyone else.

You are right to be shocked that ignorant doctors are still telling us to exercise. It's not our fault we tried to follow their advice. You have been dealt a rotten hand, but I hope you won't give up hope.


Some people do improve from bedbound even without there being a treatment. We can't know what comes next for us.

I think there will be treatments that will significantly improve quality of life, even if not a complete cure in the next few years. Research is making some progress, and I think the fact that so many clinicians worldwide have been disabled by long covid is waking up the medical profession. Slowly but surely...
 
V.R.T. said:
Thank you. I apologise for derailing the conversation here. I have been in poor mental health, and should have heeded the trigger warning.
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I am sorry we have given you the idea that hope is gone.

I spoke to a friend this morning who said that there is reason to be optimistic, but we still need to keep on keeping on.

Making peace with it is a work in progress. It is hard. And an ongoing process. I am finding threads like this one incredibly helpful, to be able to talk about it, and work through these feelings we all feel - frustration and grief for what we had hoped our lives would be.

For me it is about realising that this is a marathon. A relay race, even and I cannot just focus my increasingly limited energies on activism, as it is never going to move as fast as I want it to and I have to try and use my energies on trying to find what meaning I still can in my life in the meantime.

If you do feel despair please, please reach out: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
 
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V.R.T. said:
I'm glad that you have all made peace with the idea. I can't accept this life. You are all much stronger than me.
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I haven't made peace, I've tried so many things tests and treatments wise. More than 99% of patients probably. But now I have no energy to try anything else (and I kinda ran out of options treatments wise) and no energy to be upset about it.
 
JellyBabyKid said:
if you are anything like me it is more of an uneasy truce from necessity
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Poignant way of describing it yes. There are still days I feel like smashing everything in the kitchen cabinet against the wall btw, would cost too much money and energy though. When I was lying in bed for 18 hours a day I felt like you feel now @V.R.T. , Which isn't really anything to do with strength or a lack of strength or with character of any of that. I'm sorry if I implied one way or the other that it was, because it really isn't.
 
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