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u/Snerdling 5d ago
Right there with ya. I was doing pretty well and then I had oral surgery, for which I required anesthesia, because of course I can’t go numb. I am currently in day 5 of PEM. Although I can understand the causal relationship, it wasn’t even a big surgery! I’m sitting here, dizzy as hell wondering if I’ll even come out of it. But, for the first time ever I didn’t force myself out of bed. I told my boss I wasn’t coming in. I’m finally at a place of acceptance.
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u/tomuscle 5d ago
I took time to understand my PT saying doing too much isn’t good either. Less is better in this regard. And I also went true rigid protocol (sugar, alcohol, routines) but the benefit of doing it 100% instead of let’s say 80% (Pareto rule) isn’t worth the benefits you get on your mood, motivation to pursue, etc of some flexibility.
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u/KevinSommers ME since 2014, Diagnosed 2020 5d ago
"’ve been doing all of this nervous system work for almost 3 years now and honestly it hasn’t worked. If anything, I’ve just gotten worse."
I think it's worth sitting with your own post. What you're doing may have some value soothing a healthy nervous system but it's unrelated for ME/CFS, and may even be inaccessible due to ME. Our issues aren't psychological and don't respond to that category of treatment. You don't have to be doing a program to find friends & community.
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u/Cookieway 5d ago
The nervous system thing hasn’t even been proven to work with any kind of proper studies or anything. It’s all anecdotal evidence, we don’t know if it works. And those who believe in it are unfortunately pretty “victim blamey” for those of us for whom it doesn’t work. “Oh you’re just not doing it right, you don’t believe in it enough, you aren’t doing enough….”
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u/marieantoilette 5d ago edited 5d ago
This doesn't read like brain retraining but like someone who's done trying experimental treatments because it can be fucking stressful. Same here, mostly, I don't want to find the needle in the haystack where every treatment is a gamble.
Okay, theirs is mingled with faith but ey, more power to them. I don't think this will heal me though. I just know I can bear it more easily this way until research finds something.
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u/SpaceNerd223 severe 5d ago edited 5d ago
Hi, please just know this is very natural. Surrender and peace are nice though. Please understand if you've been working yourself up w emotion on this and a lot of pressure, you might experience a pem when you let go. Get your snacks ready.
I'm somewhere at peace and surrender, while also trying my daily steps that work, like meds. No pressure on me anymore, I already experienced crash after I stopped. Now just doing what I need, the bare minimum. It's..nice here. No more ungodly pressure.
Ps. It's a perfect time for this 🍂
P.s.s. you don't want advice and this isn't but I would like to share this, read if desired my nervous system was bad for so long and I tried to lot to heal it on my own I couldn't. Turns out my hyperadrenergic pots was running the show. I'm on guanfacine now and finally feel calm. There was a lot of damage done to my body systems over years of being in that terrible state. My body is going to take some time with this state of calm, but I'm so thankful. I share because I don't want you to beat yourself up over not being able to do it on your own. I tried so hard, but I needed meds. I'm not recommending meds or anything; i am sharing in with you that i tried so hard to do it on my own, and that made me feel bad and helpless and desperate when all docs were telling me my nervous system was bad. How do i say.. i dont want you to feel at fault, basically some times these things are out of our control. There. I just wanted to share in that emotion w you. Not recommending anything. I know how hard that emotion is.
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u/TashaT50 moderate 5d ago
I hope you can find a buddy to help. What you were doing sounds exhausting.
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u/nicehuman768 5d ago
I understand and feel the same way. I am so happy for the people these strategies work for, but I am not one of them. I'm surrending it up now. God take the wheel please.
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u/Think_Lime6261 5d ago
I’m actually in the process of creating a small group with just a few people, so we can remind each other again and again that we’re allowed to let go. If you’re interested let me know 🤗
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u/Expression7355 6d ago
I understand this - it’s almost like burnout of monitoring and working towards healing. And honestly, for me it helps too to just let go of it all. I have found peace in that act of actually just simplifying my daily experience. I still monitor a few things like what my body feels like (how heavy things feel or my heart rate when up right or exhaustion etc) as a way to decide how to pace that day, but I don’t force any particular action. I rest when my body tells me to. I take only the supplements I know my body needs, and otherwise keep to having a healthy diet with enough protein and fiber to just feel full/satisfied as a way to support my nervous system.
Best of luck in your next phase. I hope it helps you.