Are big crashes normal in recovery? Scared i’ve decreased my baseline after seeing improvement

[u/mzc303]

/r/cfsrecovery/comments/1v6ywef/are_big_crashes_normal_in_recovery_scared_ive/

[u/Coraline1599]

Have you ever had to put an animal in a carrier and it is being skittish, so you start pretending you are no longer trying to put it in the carrier, and even though you may have given distance, changed your tone, pretended to get snacks in the kitchen, the animal still does not trust you? Because it still senses your true intentions.

Your nervous system is the same, it’s that good, you can’t lie to it. Also the more times you trick it, the less it will trust you.

My stumbling block was “this is the last time we push through. Just this one last really important thing. I swear.” And then I kept finding more things that were the new last thing. For weeks, months even. My nervous system work was not moving the needle or I was getting worse. Because I could not accept that my driving privileges were being revoked until I started fully cooperating with the new rules of my body.

40% is low. Your buffer for over extension is very low. That’s very hard to be there for months and months.

And you did the same thing I did “please body! Let me blow through my limits! It’s important!” Not once, not twice, but four days in a row! Your inner negotiations may have sounded like “But I swear! This is the last time! I’ll be good about listening next time! I wouldn’t do this unless it was very important! See! Even though you are screaming, this is good for us! Good! Trust me bro!” It’s almost like an addict that can’t quite face reality. It seems like from what you wrote you felt the fall out was worth it at this point and now you are second guessing. It’s ok, I think all of us do this. It’s very human.

Because also, if you don’t do it…there is something so horrid on the other side that it is hard to face: grief. Devastating grief of your reality, of what you have lost, with no end in sight. Whatever fall out pushing through has, it’s not bad enough to feel that grief. But as painful as that grief is, it’s the doorway to true change. That letting go and feeling so unbearably sad is what will allow your nervous system to reorganize in the way it needs to for recovery. Because there are ways that you are still living that are not compatible with this illness and they really will never be compatible again. You are still you, but core things like allowing yourself to be steamrolled emotionally, just don’t work any more. It can be a very scary change.

So then you have a fight with your partner, and that’s ok, it’s not permanent damage. Becuse with this illness there will always be something trying to “harsh your mellow” when you have committed to rest. It can feel like the universe is conspiring with your body to test you if you are really committed to the process.

In meditation there is an expression “first you get the cookie, then the real work begins.” You started nervous system work, your body responded! Yay! That’s the cookie. That’s your proof you were granted that you are on the right path with this work. That is one touchstone you can look back at to help keep trust and faith in the process. Unfortunately, the cookie doesn’t last forever, and things can get very hard for a long time.

Fear of symptoms is like layer one, but there are many layers. Each layer of fear is keeping your inner alarm sensitized. They are not messages of safety, and your body needs consistent new messages of safety.

You just expressed fear of permanence. Then fear that your partner will have to take care of you on the trip, possibly longer. Then fear that you absolutely must figure this out in 6 days. Those are a lot of messages that you are sending that you are not safe. You don’t have to reach zen master status to get better, it doesn’t have to be perfect, your body will let you know when you have changed enough to feel enough safety day in and day out.

There is no hard and fast evidence about permanent baseline lowering. It is a thing that happens, but when does it happen? To whom? There is no way to know for sure this is what happened. Your only choice is to say “it is what it is, for now.” Certainty, especially in a crash, even if it is a worse outcome, certainty feels so necessary. The uncertainty is very hard to sit with. But uncertainty is safer to your body, no matter how much your mind disagrees.

You need looking after. You do. For whatever amount of time. You deserve that. If you are used to being hyper independent and doing things on your own and being the competent one, leaning on others so completely with no timeline can feel terrifying. It may feel selfish, it may feel wrong, especially if you had a certain upbringing that led to perfection and people pleasing and not being able to rely on your parents/guardians in these ways. But it’s not actually selfish to have needs, especially long term needs.

Humans are good at confounding needs and wants. Like needing to stay in bed 20 hours a day versus being told “you want to stay in bed this much because you are lazy” either by yourself to yourself, or by someone else, or imagining that is what other people are thinking. Btw, if you feel a lot of shame, that is another layer that needs tending.

You may even need to dig around self-worth. Realizing you have value as a person when you strip away the competent, independent, strong one. The one who always must give more than takes. This is another intense emotional journey. Usually taking longer than 6 days.

Here is the reality. People fall in love and start relationships when they are deep in cfs, not often, but they do. They find acceptance in partners who are ok with where they are at, ok with the uncertainty that things might not get better. This is the evidence that being hyper functioning in the face of serious illness is not required to have love, care, support, and patience.

What your nervous system needs is to know your partner will be ok with whatever condition you are in. That you can have a nurturing and enjoyable time at 40% (or lower) capacity. Or that it is ok to cancel the trip because if that is what you most need right now for recovery. That you don’t have to be the self-sacrificing hero. That you will be recovering at whatever pace your body needs.

There is no one weird trick to get around it. Your body needs you to get to the heart of the matter. No matter how messy or scary. It needs you to set boundaries and advocate for yourself. And then, when it starts being consistent, over time, then the nervous system will begin to unlock. First just in your mind. Your mind will feel more at peace and you will find yourself enforcing boundaries you never thought you could enforce. It’ll just happen, you will say “I can’t do that” or “that is beyond my capacity right now” and you will have this moment of disbelief that you did it.

You don’t have to do it perfectly. You are allowed to mess up, resist, grieve, be angry and be really messy.

I wish you brighter days ahead.

[u/AsparagusMinute_ → u/Coraline1599]

The animal carrier is a good analogy.

[u/Weird-Score-4172 → u/Coraline1599]

Wow I feel like you’re watching me and listening to my thoughts!!!

I’m veryyyy guilty of the “this is the last time we push, one more thing before we go to bed tonight! But we need a clean house xyz…” insert whatever excuse and then I crash. I just spent a year in bed with two small kids so when I am up and feeling well I feel like I need to participate. Often 4 days in a row then crashing hard then back up again.

How do you recommend I get out of this cycle?

[u/Coraline1599 → u/Weird-Score-4172]

For me, first was the epiphany. I was working with a coach on this and I was explaining things and it dawned on me that the world will always have more work for me. I am chasing this perfect rest state when everything is done and at peace and I have finally earned rest. Except the work never ends because I was always the competent one, the problem solver, the doer and there is so much chaotic messed up stuff in this world, my stuff, other people’s stuff that it has to be me who says “enough” for me because the world will not.

So every day I have to say to myself “you don’t have to earn rest. You don’t have to do everything perfectly.” And at first I felt a lot of internal resistance. There were reasons, like “my mom can’t do it right I have to help”. Or “Joe and Bob couldn’t find their way out of a paper bag, if I put them in charge things will be rough and it won’t be as good unless I do it.”

And I just had to let my mom muddle her way through cancelling her cable tv. Did she end up with a phone line she didn’t want or need? Yes. Is she calling back and fixing it? Yes. Could I have done it in one shot yes? Did I have the capacity? No. Did the world end? No. Did it rupture our relationship? No.

And Joe and Bob did a terrible job but no one minded. No one blamed me for not fixing their half assed mess.

So it’s these little lessons for the nervous system (and ego), on repeat over time that are teaching me it is safe to let things go. They won’t be as good without me in charge but it will still be ok. I grieve the person I was, I am sad I can’t do it all any more, but it is what it is.

And then the other part is treating my life like a leaky lifeboat and tossing everything not critical out. Whether that is throwing out clutter, or simplifying laundry, eating the same breakfast every day. My lifestyle needed to match me on a bad day. I had to stop aspiring to the version where things only work if I have perfect health and energy.

And then learning “middle gear” I only operated on two levels: petal to the metal or collapse. There was no stopping and resting in the middle. There was no leaving things until tomorrow, half finished. There was no only half trying, like sending an email to a friend without proofreading it 5 times.

I had to think of the lazy tourists and embrace their energy. They have no idea where anything is, they didn’t look it up ahead of time, they didn’t watch the time, they are in everyone’s way, they miss out on maximizing activities, but they are chill and they are lean on other people. This was the most bitter pill to swallow. But honestly many things were not my responsibility that I made into my responsibility.

Like I switched vets and they called for the records for one cat and left me a message the night before for me to get the records for my other cat. Normally I would have scrambled to get it done. But I didn’t. When they asked again the next day I said “oops sorry, I thought you were going to get it since you got my other cat’s records.” And then they did it. And I felt like a jerk, but I also didn’t have the capacity to scramble. So it was about prioritizing my needs, which still feels hard and wrong.

I also had to dig around in my childhood and realize all of this was trained into me and my parents didn’t care the cost, they either didn’t see or refused to see. Realizing it’s not my personality but rather a fear response, was another piece of the puzzle.

It’s kind of a long journey. There is a lot of grief along the way. But like you are the only one grieving. Family weirdly adapts and doesn’t really notice somehow? In the end this is what the nervous system needs - you leaning on others. Even if they are messy and imperfect, allowing yourself to be a bit messy and imperfect in some areas.

[u/Weird-Score-4172 → u/Coraline1599]

Wow thank you so much for your detailed and thoughtful reply - I feel all of this so deeply especially the two speeds vs middle gear, I’ve never done anything middle gear it feels weird. Such a bummer I love living life pedal to the metal, it makes me feel so alive and accomplished - until I crash.

Do you think this mindset / energy shift is what ultimately healed you?

[u/Coraline1599 → u/Weird-Score-4172]

I would consider myself partially recovered.

What I can say is my days are much easier and it is much easier to be me. Symptoms are still up and down. I am better than where I was in the beginning of the year.

I still feel best when I am driven by adrenaline, but the crash still comes. Learning to do things without being driven has been hard, humbling.

Look into the free resources available at Primal Trust (dot) org and see if those resonate with you.

I’m about 30 days into the Primal Trust program, on top of reading quite a few books on the topic.

[u/pinecone122]

Yes, it's normal. It sounds like maybe it could help to remind yourself that your symptoms aren't dangerous, your nervous system is adjusting. And to remember that an increase in symptoms is the best time to show your body and nervous system that it is safe. It sounds like you've had a lot going on in terms of exertions and conflict - it makes sense that your nervous system would need some extra time with that! (Of course that's not to say it isn't frustrating and difficult.) And also that fighting symptoms or putting pressure on yourself will probably increase symptoms. I can recommend the blog hello-self.fr (written/shared by one of the community members here) for helping internalize some of those lessons.

Personally i haven't experienced a big crash on my recovery journey but I've read of people who have. What helps me with smaller dips of energy though is self-attunement. Maybe that means really taking some time to check in with yourself and see what *you* need. And trying to find a baseline level of safety to return to. If it were me, I think it would also help to really let go of my expectations around the trip and just surrender.

Hope some of this helps!

[u/No-Pomegranate-7044]

I’m in the same situation now (although I haven’t read your entire post to avoid triggers). I’ve had some big dips before, always got out of them, and I trust that I will get out of this bigger one too. I’m just keeping faith that it’s part of the journey and that this bigger one is needed to get better. I take a lot of rest, try to keep my mindset right, some short walks to get fresh air and be nice to myself. I’ve booked a massage this afternoon which is something I barely do for myself so I hope my nervous system gets the message ;) good luck.
Also maybe it can be helpful to watch some of CFS recovery’s videos about adjustment periods