[Tanktimus the Encourager]

6 hours ago, Harriet said:

I am torn between doing what I have done before : trying to painstakingly develop a motivational "structure" using routines, habit stacking, journalling and other techniques in the hopes that something will stick around when the next slug phase comes. Or trying something new: radical acceptance of slug phases with a focus on quality rest, in the hopes that less guilt and straining will lead to quicker recovery, or even just reduce my suffering if the recovery time remains the same. What I would need, then, is a way of knowing when the slug phase is over and it's time to put in some effort (even if I'm  adequately recovered, it takes a little motivation to get started again after one's routine is disrupted). Or maybe a truly achievable fallback routine that has helpful things I can do even with the slug debuff.

 

What do? Resistance or acceptance? Coast or grind? Striving or stillness?

Acceptance is necessary even if you want to keep searching for helpful options. Whether or not you eventually find something that helps, accepting that things are the way they are now is vital. As Victor Frankl was famous for teaching, the only thing that can never be taken from you is your ability to choose how you respond to your circumstances. There is no reason you can't suggest the naltrexone to your doctor and work on radical acceptance. The two are not mutually exclusive. Even if you choose to hope things will change someday, you can choose to accept things are the way they are now.

 

Furthermore, radical acceptance will allow you to be more effective if you do choose to keep looking for Things That Might Help, because you'll do so without the mental effort required in refusing to accept the situation as it is right now.

[Scaly Freak]

12 hours ago, Harriet said:

slug phases during which I am very demotivated and hugely lazy

 

Ahem. Have we not talked about this in the past? More than once? *frowns, crosses arms over chest, taps a foot*

 

You are not lazy, you have a medical condition called Chronic Fatigue Syndrome. As the name strongly implies, being exhausted/low-energy/tired is a major symptom of this condition. If you broke a leg, and were unable to walk for a few months while it healed, no one here would dare to even think that the reason you're not going for daily walks is because you're lazy, and you wouldn't either, because we all know you're injured and unable to go for walks -- that's no reflection on your character in any way. It just is.

 

Obviously, what you end up calling these phases is entirely up to you, but I would urge you to please make an effort to use words that don't have negative connotations around resting or have low energy. Chronic medical conditions are hard enough to learn to live with... we don't need to make it harder on ourselves with negative self-talk.

 

That's a long-winded and slightly harsh way of saying that I think a challenge around accepting and embracing the hibernation phases might be a good tactic from a mental health perspective.

 

(I'm not trying to be mean about this and apologize for any part of my post that went too far. ) 

 

EDIT: Look at that.... Tank already said it better than I did.  

[KB Girl]

Maybe getting dressed in the morning even during resting phases might also be helpful to gauge when the resting phase may be over. If it was easy to do that may tell you something.

You could build a habit stack that way, do thing 1, was it easy? No then proceed to play games and such. Yes then proceed to next stacked habit thingy. 

[Harriet]

17 hours ago, Everstorm said:

First of all, may I gently suggest that you rephrase "slug phases" for yourself?  There is a connotation of laziness there that is neither true nor kind.  Maybe think of it as hibernation/estivation (the summer version), which are natural survival strategies for times of low energy resources or when energy expenditure would be unhealthy.   Pygmy possums hibernate!

 

Secondly, whether you build the entire challenge around it or not, maybe have a goal of prioritizing/normalizing rest, both as a preventative measure and as a treatment when needed.  Then, you can think of rest as being on a dial, not a switch, that you turn up or down as needed, not all-or-nothing, grind-or-coast.

 

I dunno... there's definitely an element of truth. I am a little bit lazy. It's not my main problem. I feel like it would be a manageable personal flaw if not for the CFS. But I don't want to pretend that I was a massively industrious and ambitious person before I got sick. I was an escapist who didn't want to do school, homework, housework, or brushing my teeth. I wanted to read fantasy novels, play and climb trees.

Pygmy possums sound a lot more sympathetic than slugs, though. Oooh, I know about estivation! I read about it in Richard Johnson's book on his proposed survival switch which he thinks is conserved in humans, even though we don't hibernate.

 

Rest as a dial sounds like a much more useful concept, though I'll have to put a bit of thought into quantifying that. Thank you for this idea, it's a good one.

 

15 hours ago, Tanktimus the Encourager said:

Acceptance is necessary even if you want to keep searching for helpful options. Whether or not you eventually find something that helps, accepting that things are the way they are now is vital. As Victor Frankl was famous for teaching, the only thing that can never be taken from you is your ability to choose how you respond to your circumstances. There is no reason you can't suggest the naltrexone to your doctor and work on radical acceptance. The two are not mutually exclusive. Even if you choose to hope things will change someday, you can choose to accept things are the way they are now.

 

Furthermore, radical acceptance will allow you to be more effective if you do choose to keep looking for Things That Might Help, because you'll do so without the mental effort required in refusing to accept the situation as it is right now.

 

Thank you. That sounds exactly correct, but hard. It's going to require some mental discipline to find this balance and not veer into obsession or giving up. There's some kind of aikido lesson in here about effective effort without needless resistance.

 

10 hours ago, Scaly Freak said:

You are not lazy, you have a medical condition called Chronic Fatigue Syndrome. As the name strongly implies, being exhausted/low-energy/tired is a major symptom of this condition. If you broke a leg, and were unable to walk for a few months while it healed, no one here would dare to even think that the reason you're not going for daily walks is because you're lazy, and you wouldn't either, because we all know you're injured and unable to go for walks -- that's no reflection on your character in any way. It just is.

 

As I wrote to Everstorm above, I think I am a little bit lazy, though. Obviously this would be easier to manage without the CFS, but I should be aware that I do have a little tendency to do a bit less than I could manage, and to avoid difficult things. It's a really tricky mix, because it makes it hard to know when I'm recovered enough to give things a little push. Sometimes choosing a bit of difficulty is the right thing, you know? But when? Imagine a pool where black shades into extremely dark indigo. That's the mix of my fatigue and escapism. It's not like a broken leg at all, because there's no literal or physical barrier to action, only disinclination. Sometimes the disinclination is an important protection that should be heeded (like not wanting to go for your usual jog when you have covid) but some of it is probably learned helplessness, and needs to be habitually smashed in order to expand my abilities. I'm tired for sure. But I am also in a slightly dangerous situation where I have none of the external pressures that force other people to do their job, finish their degree, etc. Lots of people without CFS wouldn't achieve much without those external pressures. Pretty sure my brother would rather stay home and not work, though he doesn't have CFS. I can't get a job or go back to school, I am actually too sick for that. But I don't think I'm too sick to have some useful routines and do some things like art. Surely not. So yeah, the stamina bar will never be full but the trouble is recognising when it's high enough to do some art or lifting--low stamina can be mistaken for the procrastination and resistance debuffs, but one is fixed by resting and the other is fixed by fighting.

 

10 hours ago, Scaly Freak said:

Obviously, what you end up calling these phases is entirely up to you, but I would urge you to please make an effort to use words that don't have negative connotations around resting or have low energy. Chronic medical conditions are hard enough to learn to live with... we don't need to make it harder on ourselves with negative self-talk.

 

That's a long-winded and slightly harsh way of saying that I think a challenge around accepting and embracing the hibernation phases might be a good tactic from a mental health perspective.

 

You may be right about the negative wording, though. UGH, okay, what word is like hibernation or estivation but for an adorable humanoid? Or maybe, like, the name for resting and regenerating health in a video game? So I can feel like an awesome warrior who is wisely managing my HP and stamina? I'll have a think about that. Maybe something like a caterpillar or cocoon phase. Or a spriggan when it bows down and regenerates. Dormancy.

By the way, I started playing god of war 2018. It feels incredibly different to my pc games--less intellectual, more visceral. I've never had to actually use reflexes to defeat enemies. I'm so bad at it 😆 (I had to look up "what is r3 button?" and I keep mixing up the buttons), but I love that you just try again, learning a little more each time, and that the enemies need different approaches that you can figure out through observation--this one can be shielded against, but this one you have to dodge, and this one you have to attack relentlessly. It felt so awesome when I figured out the fights. There's nothing like that in skyrim. And it actually feels less mentally exhausting than the semi-open divinity 2, where I have to decide between about 50 things I could do but which all have various prerequisites (go here, get that). I like them both, but divinity requires a little bit of patience, and causes less total immersion.

 

10 hours ago, Scaly Freak said:

(I'm not trying to be mean about this and apologize for any part of my post that went too far. )

 

No worries at all. You're allowed to tell me when I'm off track and you were not mean at all but perfectly nice about it.

 

9 hours ago, KB Girl said:

Maybe getting dressed in the morning even during resting phases might also be helpful to gauge when the resting phase may be over. If it was easy to do that may tell you something.

You could build a habit stack that way, do thing 1, was it easy? No then proceed to play games and such. Yes then proceed to next stacked habit thingy. 

 

That's a brilliant idea! I was thinking I should journal in the morning to reflect on how tired I am, but anchoring it to an actual activity that creates a standard measure is a fantastic idea because it can be really hard to tell how tired I am if I'm just sitting down writing.

Yeah so putting on my jeans felt a little fatiguing today. Nothing extreme, just a noticeable "ugh" like having to do a squat or something. Is that normal, though? Is that what everyone feels?

[KB Girl]

I do get what you’re saying about external pressure but I think you’re confusing being unmotivated with laziness. Definitely not the same thing. 
A tendency to avoid difficult things is also not laziness.

 

1 hour ago, Harriet said:

Yeah so putting on my jeans felt a little fatiguing today. Nothing extreme, just a noticeable "ugh" like having to do a squat or something. Is that normal, though? Is that what everyone feels?

Oh yes.. like I have difficulty getting out of bed today. Am I feeling depressed? Or just unmotivated? Simply tired? Or am I just having difficulty getting started?

I suppose when in doubt just go to the next thing in the habit stack and see when you go from not sure to quite sure.

 

and no, putting on pants is never a difficult or fatigueing part of my day, pretty sure it’s not normal for people without CFS (or other conditions).

[Harriet]

3 hours ago, KB Girl said:

I do get what you’re saying about external pressure but I think you’re confusing being unmotivated with laziness. Definitely not the same thing. 
A tendency to avoid difficult things is also not laziness.

 

Are they not? I guess low motivation, procrastination, avoidance and resistance are more accurate but it comes down to the same problem, right? Perhaps even the same phenomenon as the don't wannas as described by @sarakingdom.  Not doing things I could/should/want to do because I have some mental or emotional barrier.

 

3 hours ago, KB Girl said:

I suppose when in doubt just go to the next thing in the habit stack and see when you go from not sure to quite sure.

 

Do you mean have a list of possible things to do and glance at it to see what feels most possible, or?

 

3 hours ago, KB Girl said:

and no, putting on pants is never a difficult or fatigueing part of my day, pretty sure it’s not normal for people without CFS (or other conditions).

That's actually helpful to know, since I have trouble knowing what's normal, what's avoidance, and what's fatigue.

[Salinger]

I think having a list of possible tasks in the day, and doing what you can is a great idea harriet

 

love you xx

[Harriet]

3 hours ago, Salinger said:

I think having a list of possible tasks in the day, and doing what you can is a great idea harriet

 

love you xx

 

I'll try to make such a list. Thanks, possum ❤️

[Scaly Freak]

16 hours ago, Harriet said:

Imagine a pool where black shades into extremely dark indigo. That's the mix of my fatigue and escapism. It's not like a broken leg at all, because there's no literal or physical barrier to action, only disinclination. Sometimes the disinclination is an important protection that should be heeded (like not wanting to go for your usual jog when you have covid) but some of it is probably learned helplessness, and needs to be habitually smashed in order to expand my abilities. I'm tired for sure. But I am also in a slightly dangerous situation where I have none of the external pressures that force other people to do their job, finish their degree, etc. Lots of people without CFS wouldn't achieve much without those external pressures. 

 

Everything in your paragraph makes sense and resonates, but I'm cutting down my quote to just this because I think this is the important point part. I completely agree with the bolded part - lots of people would not achieve "greatness" or display as much as ambition as they do, without external pressures.  But I don't believe that this is because of an inherent laziness, I believe it's because the human race as a whole has evolved to take the path of least resistance in everything, to conserve energy (both mental and physical) and to minimize personal risk.

 

In the society we live in today, we grow up learning that striving towards bigger and better things is a virtue. Depending on the culture we grow up in, we might actually grow up to believe that this virtue is an inherent part of all "normal" human beings, to the point that a person who doesn't have this drive therefor must be somehow faulty, not quite as virtuous as the person who displays ambitions. We learn to believe that the person without drive is "lazy", and that being lazy is a bad thing. 

 

Obviously I don't believe it's that simple, especially because our society has evolved into one where several types of external pressure is the norm - the most obvious example is that almost all adults have some kind of bills to pay. I also don't believe that laziness is not a thing, or that it's not human nature to want to hide way from things that are unpleasant. The difficulty, that presents as a different challenge for everyone, is to learn to tell the difference between an urge to use a medical condition as an excuse to hide, and when we are genuinely tired and need to rest.

 

I'll spare you my rant on all the other virtues that are unfairly labeled as "laziness" by overly ambitious cultures, such as the ability to see and appreciate positive things in the middle of hardship, the rare ability to be content with very little, and many other undervalued abilities.  

 

16 hours ago, Harriet said:

You may be right about the negative wording, though. UGH, okay, what word is like hibernation or estivation but for an adorable humanoid? Or maybe, like, the name for resting and regenerating health in a video game? So I can feel like an awesome warrior who is wisely managing my HP and stamina? I'll have a think about that. Maybe something like a caterpillar or cocoon phase. Or a spriggan when it bows down and regenerates. Dormancy.

 

If you have been paying attention in God of War, you will have noticed that Kratos regenerates health when he's not in battle (the exact mechanic is "when not taking damage for a while"). Perhaps the term for resting and regenerating is something as simple as "a tactical retreat"?

 

Speaking of God of War, it sounds as if you're enjoying it, which is great to hear. Another gamer joins the fold!

 

[Scaly Freak]

11 hours ago, KB Girl said:

and no, putting on pants is never a difficult or fatigueing part of my day, pretty sure it’s not normal for people without CFS (or other conditions).

 

It can be difficult, but I think that has to do with the context of the pants. Putting on pants to walk the dog? Yes, easily done.  Putting on pants to go to a colonoscopy appointment? This can be quite difficult. 

 

That said, the physical act of putting on the pants -- right leg in, then left leg in, pull pants upwards, button and zip them -- is not a draining activity, as it doesn't consume a lot of energy.

[Harriet]

11 hours ago, Scaly Freak said:

 

Everything in your paragraph makes sense and resonates, but I'm cutting down my quote to just this because I think this is the important point part. I completely agree with the bolded part - lots of people would not achieve "greatness" or display as much as ambition as they do, without external pressures.  But I don't believe that this is because of an inherent laziness, I believe it's because the human race as a whole has evolved to take the path of least resistance in everything, to conserve energy (both mental and physical) and to minimize personal risk.

 

In the society we live in today, we grow up learning that striving towards bigger and better things is a virtue. Depending on the culture we grow up in, we might actually grow up to believe that this virtue is an inherent part of all "normal" human beings, to the point that a person who doesn't have this drive therefor must be somehow faulty, not quite as virtuous as the person who displays ambitions. We learn to believe that the person without drive is "lazy", and that being lazy is a bad thing. 

 

I don't expect to be great or impressive. I just don't want a life of eating and sleeping and playing games. I want to include some challenging or meaningful things like art and lifting. That's a key part of what I consider a good enough life.

 

11 hours ago, Scaly Freak said:

The difficulty, that presents as a different challenge for everyone, is to learn to tell the difference between an urge to use a medical condition as an excuse to hide, and when we are genuinely tired and need to rest.

 

Yep, that's the difficulty.

 

11 hours ago, Scaly Freak said:

If you have been paying attention in God of War, you will have noticed that Kratos regenerates health when he's not in battle (the exact mechanic is "when not taking damage for a while"). Perhaps the term for resting and regenerating is something as simple as "a tactical retreat"?

 

I think he gets health when he stomps little green crystals (makes as much sense as anything else lol) but also when I die (often) he starts again with full health, which is a very decent and considerate feature.

But yes. Retreat, respawn, regenerate...

 

11 hours ago, Scaly Freak said:

Speaking of God of War, it sounds as if you're enjoying it, which is great to hear. Another gamer joins the fold!

 

I AM!!!!!!!!! SHE DOES!!!! I am now a console gamer.

[TimovieMan]

1 hour ago, Harriet said:

I AM!!!!!!!!! SHE DOES!!!! I am now a console gamer.

[Silmarilliane]

On 3/17/2023 at 5:42 PM, Harriet said:

I sometimes go shopping or walking in my house hoodie. It's not completely despicable and loathesome but it definitely doesn't make me feel like my best self. My most comfy self maybe.

 

Oh, I don't really wear anything to sleep so not getting dressed in the morning is more of a no-no  

[Scaly Freak]

5 hours ago, Silmarilliane said:

 

Oh, I don't really wear anything to sleep so not getting dressed in the morning is more of a no-no  

 

Same here.... wandering around outside wearing nothing but body lotion and a tendinitis wrist brace is inadvisable in the extreme.

[Silmarilliane]

On 3/20/2023 at 5:58 PM, Scaly Freak said:

 

Same here.... wandering around outside wearing nothing but body lotion and a tendinitis wrist brace is inadvisable in the extreme.

 

This just occurred to me as I was going to sleep that I also have wrist/hand pain on waking sometimes so I bandage my wrist at night to stop moving so much. Except I don't have a bandage so I put a sock on my hand (surprisingly effective).

So I would essentially be a nudist sock puppeteer 😂