Self Gaslighting of Moderate-Severe

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hapl808

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One of the weird aspects of moderate-severe to me is the level of self gaslighting.

When I was more mild, I focused on living. Even if I crashed a few times a week, I still had a life - though much more limited than I realized. I kept having to adjust my career or plans because of health, or come up with excuses to myself why I physically couldn't do certain things, but I was still doing stuff.

Then when I'm fully bedbound, there's nothing to think about other than getting through the next minute.

I find moderate-severe a weird state - where I've been for years now. Most days I can make it to my desk a few feet away and use the computer. So I keep thinking I can do stuff. But I crash from anything that requires concentration, can't listen to music for more than a few minutes, etc. I can make phone calls, but only maybe two per day (limited time) - and can't concentrate too hard or talk too loudly.

Yet that all seems ridiculous, so I start thinking: why am I not trying more things? Forget that I've seen 50 doctors over 25 years - there's always something more to try. Trying Xyzal at the moment, along with Mucinex for some coughing and phlegm issues. Tried ivermectin recently (did nothing for me). Including supplements, I've tried over 200 things just in the last 5 years.

But there's always more I could've done, so I still feel like: how tf am I not able to find a way to improve. And yet I also am aware that for most people in my condition (decades of illness, multiple gradual or sudden worsenings, etc), there's no improvement on the horizon. Of course, the few people remaining in my life also don't understand, which doesn't help. I don't really want to even try to explain it to them, because even well meaning people are just like, "What did the doctor say?"

Anyways, nothing really to say - just venting on the cruelty of an illness where I can make it to my computer and feel like I should be able to access the world, yet one 30 minute videochat crashes me for about 7-10 days.
 
ChaoticOrchid

ChaoticOrchid

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I am a lot newer to this and currently on the "better" side of moderate. I was bedbound for about 3 months in spring 2024.

My mind is constantly playing this game on me. I think, for me, that improvement from bedbound to how I am now makes me expect to get better still even though I haven't improved further since August 2024 and my base level seems to have permanently changed.

I also want to continue to believe something will fix or hugely improve this but not drive myself crazy with this self gaslighting, as you described it.

I posted elsewhere that I started a puzzle and found it raises my heart rate significantly and makes me sweat. It baffles me why and reminds me why returning to work seems like it will never happen.
 
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hapl808

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ChaoticOrchid said:
I posted elsewhere that I started a puzzle and found it raises my heart rate significantly and makes me sweat. It baffles me why and reminds me why returning to work seems like it will never happen.
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It's so baffling and I don't really expect others to understand seeing as even decades in, I'm still somehow surprised every time. How can scrolling Reddit mindlessly be okay, but trying to write something will cause me to feel awful - and likely crash the following day.

The upside is that when things are new, it seems much higher likelihood you will recover more function. I remainded mild-moderate (still debilitating) for over a decade before things got worse.

I got sick in the late 90's, but initially my GI symptoms were so bad, I focused on that and just kind of ignored the fact that suddenly I couldn't go to the gym, felt sick every other day or more (blamed it on food), etc.

In retrospect, I realize I became a different person to manage the illness without admitting it to others or even myself. Less physical, more time in bed, less enthusiastic (now I understand that because I'm more severe - so a phone call where I allow myself to get animated will crash me, but back then it just meant I felt more crappy the next day).

But then I'm like - well, I could write a stream of consciousness post on a forum - what else can I do? I tried even to write an autobiographical longer form thing, and it seems to engage a different part of my brain. Rereading, editing, concentrating - recipe for a crash. Same with video editing - certain crash. Sometimes even watching TV will crash me - but if I rewatch a simple show, much better.

Makes no sense, like much of this illness.
 
Mary

Mary

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hapl808 said:
One of the weird aspects of moderate-severe to me is the level of self gaslighting.
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I think that's a good term, self-gaslighting. I've been noticing something similar in myself recently, basically telling myself I'm not that bad off because I'm not bedridden (when not crashed) and I can usually make it out of the house 2 times a week or so, can make my morning coffee, do laundry on a good day. I also recently realized I am moderate, and not mild. I focus on minimizing my symptoms. And in comparison to so many here, I'm not that bad off - i can still drive, can read mindless books when crashed, etc. But I truly am moderate and not mild.

Though I haven't given up, yet. Because there are times when I feel well - truly well - which usually only lasts a day and I almost always crash the next day because I will over do it. And even when I feel well I run out of energy rather quickly. But part of me thinks there's got to be a way out of this - otherwise, how is it possible for me to feel so well at times?

@hapl808 , I truly feel for you in your moderate-severe state. I've often wondered why when I've overdone it, my baseline still seems to remain the same - it doesn't drop. I recently got a cat, hoping for a companion etc. And due to feline medical events beyond my control, the first few weeks were a nightmare - physically, mentally and emotionally - I pushed myself beyond my limits in all ways and in the back of my mind lurked a fear that my baseline might drop. But it didn't, and I don't know why. But I still don't take it for granted either, that I have been able to bounce back so to speak. I know I could always get worse.

I do take a boatload of supplements and the one that I make sure that I always have is BCAAS (branched chain amino acids), which cut my PEM recovery time from 2 - 3 days to 1. I think this is probably a big reason why I minimize my symptoms to myself - I'll be thinking, well, I'll only lose one day if I do such and such, forgetting that my every day baseline functioning on a good day is roughly 4 hours of light activity and that I have to make sure to do very little the day(s) before whatever it is I want to do. So in reality the one-day event is more like a 3 or 4-day event (and also have to factor in getting sick as I seem to get sick almost every time I crash). Every day I have to calculate how much energy each thing I want to do will take, or how far will I have to walk, etc. And I look so normal - I've managed to meet a few people in some camera club meetings - and have been invited to a few things and always have to turn them down. I feel like I live in two worlds: the normal world where I don't really belong, and ME/CFS world also, where I'm healthier than so many -
 
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bad1080

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i think the self-gaslighting is in part because of all the gaslighting we have to endure just to get a diagnosis (and from doctors on top of that). some of us had immature and toxic parents, maybe a narcissistic SO after that because it was what we were used to, what we thought was normal, what we learned "love" looks like. and at the end we continue what was done to us, sometimes from an early age.
 
ChaoticOrchid

ChaoticOrchid

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bad1080 said:
i think the self-gaslighting is in part because of all the gaslighting we have to endure just to get a diagnosis (and from doctors on top of that). some of us had immature and toxic parents, maybe a narcissistic SO after that because it was what we were used to, what we thought was normal, what we learned "love" looks like. and at the end we continue what was done to us, sometimes from an early age.
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That's very insightful.
 
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Viala

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bad1080 said:
i think the self-gaslighting is in part because of all the gaslighting we have to endure just to get a diagnosis
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This and also the fact that we do get better days so it's confusing.

Re self gaslighting
Lately I've concluded that this disease is abusive. It's like that narcissist, some days it's gentle and energy bombing so we feel great, and another day it's crashing and this lasts longer. It gives hope then it takes it away, and we're not sure which part of it is true, because how it can be both? On better days we doubt ourselves that maybe it wasn't that bad maybe we exaggerated and could do more, on bad days we doubt that it will ever get better, we don't see much hope and we wish we didn't do that much.

I think self gaslighting is a natural reaction in this scenario, it's how our brains work when we experience opposing states. Dopamine fluctuates, it's confusing. Our minds get an error. In relationships it creates trauma bond, it's addictive. Maybe that's the reason why it's so difficult to stop ourselves from doing everything when we feel better and when we crash, we crash totally, mind and body, the whole package. It's like our brains compartmentalize our different states and we get two versions of ourselves.
 
ChaoticOrchid

ChaoticOrchid

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Viala said:
This and also the fact that we do get better days so it's confusing.

Re self gaslighting
Lately I've concluded that this disease is abusive. It's like that narcissist, some days it's gentle and energy bombing so we feel great, and another day it's crashing and this lasts longer. It gives hope then it takes it away, and we're not sure which part of it is true, because how it can be both? On better days we doubt ourselves that maybe it wasn't that bad maybe we exaggerated and could do more, on bad days we doubt that it will ever get better, we don't see much hope and we wish we didn't do that much.
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Absolutely spot on. Made me well up with that truth.
 
Mary

Mary

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bad1080 said:
i think the self-gaslighting is in part because of all the gaslighting we have to endure just to get a diagnosis (and from doctors on top of that).
Click to expand...
Viala said:
Lately I've concluded that this disease is abusive. It's like that narcissist, some days it's gentle and energy bombing so we feel great, and another day it's crashing and this lasts longer. It gives hope then it takes it away, and we're not sure which part of it is true, because how it can be both? On better days we doubt ourselves that maybe it wasn't that bad maybe we exaggerated and could do more, on bad days we doubt that it will ever get better, we don't see much hope and we wish we didn't do that much.
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Both of you make a lot of sense here. We don't get any validation for the horrible reality of this illness from doctors or, for the most part, from the rest of the world at large. I never made that connection before, with how I essentially doubt myself too then.

I minimize my symptoms with family. I'm very fortunate with my 2 grown sons who have never doubted me, but I don't want them to feel bad so I always focus on the positive with them, though I tell them when I'm crashed if I can't talk etc.

I remember once, several years ago, I was describing to my chiropractor what happened if I exceeded my 4 hour energy envelope, how I'd be bedridden the next day - and he briefly got a look of horror on his face, as if he truly got it, and it made me feel briefly that it truly was horrible - but the look quickly disappeared to be replaced with his bland friendly professional face. But I saw the look - I still remember it. If only all doctors responded that way!
 
Rufous McKinney

Rufous McKinney

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hapl808 said:
Makes no sense, like much of this illness.
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Makes no sense. What you describe is more or less exactly what happens to me. Its remarkably flummoxing.

Concentrating, focusing, planning, connecting things up inside the brain- seems to be a huge problem.

hapl808 said:
So I keep thinking I can do stuff.
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I think this all the time. I seem to often convince myself this is some big Illusion and surely, like tomorrow, I'll be able to hold a paint brush or last more than twenty minute at the table.

And I am a pessimist type.

Literally the other day I became convinced I could in fact, just go walk around the block and survive it.

Every few weeks, I'll wonder why am I not working on The Memoirs.


hapl808 said:
Sometimes even watching TV will crash me - but if I rewatch a simple show, much better.

Makes no sense, like much of this illness.
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Concentrating and planning - painful costly activities.
 
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