(general) How do you deal with the outside world ?

[Jo86]

I mean this:
- do you make it a point to keep your conversations short ?
- do you make it a point to mention at some point you're nursing some health issue so it's easier to talk to them knowing they'll understand if you mumble, etc... ?
- on the contrary, do you make SURE never to utter a word about the CFS ?

 

[Wishful]

It depends on the situation. I don't hesitate to explain about ME.

 

[hapl808]

Personally I'm usually vague about health issues unless they're genuinely interested. Then I usually explain in the context of post-Covid issues, which is a better framework.

I love talking on the phone, but usually have to cut the conversations shorter when I feel myself crashing or start coughing too much or my voice starts going. Varies day to day on how long I can take.

Difficult, though, because the more effort the better I sound - but the faster I crash. Yet also the better I sound, the more people want to talk to me, but the more they ask when I'm visiting, traveling again, etc.

No good answers.

 

[Nord Wolf]

Everyone I know understand where I'm at, and so they understand my limitations on conversing, etc. They also honor it. I never hide anything from people close to me. They know I can't hardly ever talk on the phone, and in-person always needs to be short.

However, with everyone else, I tell them what they need to know in order to interact with me. If they honor that, great, and if not then I go on my way. My energy is more important to me than their emotional state.

On the other hand, I do my best to avoid too many interactions with the insane outside world anymore...

 

[YippeeKi YOW !!]

Personally I'm usually vague about health issues unless they're genuinely interested. Then I usually explain in the context of post-Covid issues, which is a better framework.

DING DING DING DING !!! Winner, winner, chicken dinner ....

That's an absolutely brilliant way to dal with explaining ME effects without getting into the weeds with people who ..... 1) may not care that much, and .... 2) Probably wouldn't get it if expressed otherwise.

It may be the only real-world benefit we get from COVID, in spite of early high hopes re similarities between long-COVID and ME increasing funding and understanding of ME ... ....

 

[Seadragon]

On the other hand, I do my best to avoid too many interactions with the insane outside world anymore...

This

 

[YippeeKi YOW !!]

I mean this:
- do you make it a point to keep your conversations short ?

Always. Talking on the phone is exhausting for me .... face-to-face is sometims better, sometimes worse. Either way I limit exposure as best I can ....

- do you make it a point to mention at some point you're nursing some health issue so it's easier to talk to them knowing they'll understand if you mumble, etc... ?

It depends on who I'm talking with. Friends, yes, others (like customer service reps or anyone in the business world that I have to communicate with) on a case-by-case basis ....

- on the contrary, do you make SURE never to utter a word about the CFS ?

Agan, depends. Ive found that mentions of ME (CFS is a slightly different illness) usually draw perfunctory questions about what the hell it is, followed by yawns, which isn't a bad way to get off of a phone call or out of a convo ....

If it's Drs, I've found that mentions of ME draw a raised eyebrow and a thinly disguised contemptuous smile, so I would avoid mentioning it uness absolutely essential

On the other hand, I do my best to avoid too many interactions with the insane outside world anymore...

AND ANOTHER DING DING DING !!!! Winner, winner answer.
I do everything I can to limit, curtail, avoid, or duck any contact with the outside world unless absolutely necessary, unavoidable, and/or essential to my or DB's wellbeing in some way ....

 

[gm286]

This may seem unpopular, but I kind of make it a point to confront / handle the conversation to the best of my capacity and abilities at that specific point in time. Else, I always try to anticipate, meaning that I relegate social contact to a minimum if I’m in a crash.

If I’m absolutely unwell, and cognitively cannot perform, I find that the person opposite me has already taken notice and so I take my next cue from their own display — usually they’ll be concerned or aware that something is off. I do try to make it a point not to ever go for your option 3, I refuse to live in a one-track world and believe that’s one part of the philosophical disposition that lead me to ME/CFS.

I try to make it a point to be transparent and/or honest.

 

[YippeeKi YOW !!]

I do try to make it a point not to ever go for your option 3, I refuse to live in a one-track world and believe that’s one part of the philosophical disposition that lead me to ME/CFS.

You didnt quote what you're responding to, so I'm assuming that "option 3" may be my preference for seriously limiting contact with the outside world.

Unlike your experience, I got to ME after gregarious and constant contact with the outside world, and interaction in both business, volunterism, and personal relationships, and I know that it's not something I can indulge in with my current load of ME without considerable, and very unpleasant, blowback, as well as risking a permanent downgrade in my already limited life choices.

We're all different, both in the expression of this miserable little bushwhacker of an illness, how we got here (or think we did), and how we deal with it going forward ....

EDIT ... Crap. Someday Im going to learn to actually type ....

 

[Jo86]

If I’m absolutely unwell, and cognitively cannot perform, I find that the person opposite me has already taken notice and so I take my next cue from their own display — usually they’ll be concerned or aware that something is off. I do try to make it a point not to ever go for your option 3, I refuse to live in a one-track world and believe that’s one part of the philosophical disposition that lead me to ME/CFS.

Yeah I feel you. Making it a point to confront your demons and risk embarrassment but at least deal with it head on, hoping the other person notices the weirdness...

But sometimes, it just doesn't work out ! I'm at work earlier today, and this chick comes up to me and asks me these general questions "what are you doing ?", and it's sweet, but it was right around that awful, hollow period of 2pm and I'm slightly hypoglycemic or drained from the morning effort, and I couldn't muster ANYTHING and time felt like it stuck foreeeeever, and with those aggressive office lights and her locking in on me like that, I'm in my thirties and I actually blushed like I was back in my freakin teens haha and blurred out these awkward one-word answers, I felt soooooo miserable during the whole day hahaha. It's a bit depressing. She must've felt like "what in the worrrrrrrrld is wrong with this dude", even if she's got background that I've "got sleeping problems".

I'm wondering if there's a way to do better during these situations. But it's tight ! Not sure breathing relaxation is a good solution at all, or viable (like, very often no time to prepare), posture ? Trying to speaking louder to get your full voice out and avoid mumbling words ?... yikes.

 

[Blue Jay]

and I actually blushed like I was back in my freakin teens

I'm a few decades older than you, @Jo86, and I can still blush quite easily but I find it's the actual effort of speaking. I can start replying to a question, for instance, and feel such a surge of fatigue that I wish I hadn't started and at the same time I feel my face going redder and hotter.

As for mentioning the ME, I usually don't unless there's a remote chance the other person might understand or even have heard of it.

I'm in a position to be able to limit my contact with others but it is so much more difficult for you in a work situation.

 

[Jo86]

I'm in a position to be able to limit my contact with others but it is so much more difficult for you in a work situation.

Damn. So the blushing thing is forever then ! Alright, alright...

But about the part I kept in that quote: I actually see this misery as good news. It'll force me to look for solutions. As long as I was at home, and knew I was staying at home all day for months, I didn't reaaaaally care that I was on zopiclone (ambien) every single night and that it might be inhibiting me even more (prolonged, cumulative effect of GABA ?). Now, I'm reducing it because I can't stand the possibility of those horrible situations. At home all month, I didn't reaaaally care about nutrition that much. Now I'm forced to look into going back to keto or at least cutting out the carbs, and even fasting during work, so I might grant my nervous system a better situation.

Idle hands are the devil's workshop, all that. It really applies to the CFS sufferer... quite a bit !

 

[gm286]

@YippeeKi YOW !! Hey — no it was re: the OP’s options. Option 3 was basically (to me) equivalent to “don’t say a word.” Am gay/queer so I had issues with that sort of secretive position and it was not healthy for me. Obviously this is a different situation, but I still try my best to keep secrets to a minimum, even if they suggest a problematic / obscure chronic illness like ME/CFS.

Glad it’s becoming less obscure…?

 

[YippeeKi YOW !!]

Am gay/queer so I had issues with that sort of secretive position and it was not healthy for me.

Gotcha !!! And I totally understand ... it's painful and tough living with a important part of your life locked away and out of sight, and I can see how it would predispose you to absolute directness and honesty.

It's just that that takes a lot of .....energy. Of which I have close to none, and have to guard it carefully so that it's available for the people that really matter to me. And I've pretty much had it with trying to explain this crappy little head-banger of an illness to people who, I've learned, just arent going to get it. To them, it's just a slightly more dramatic form of what they know as " ....being tired ....", and no big thang .....

They should take it for a little test-drive sometime .....

 

[Jo86]

They should take it for a little test-drive sometime .....

I don't wish it on anyone though, not even as a temporary "try walking in my shoes" revenge trip against humanity ! although, I know, you're just using it as an expression here.

The worst part is the hope, I think. I mean, when there's hope, that's when it hurts most. So your body will for whatever reason give you some energy in the morning. And you can be yourself at about 80%, which is good enough, especially in these times in your life. But then, the daily crash hits, wtvr it is, 11am... 1pm, 2pm... or that whole chunk of the afternoon. And now, naturally, you're expecting yourself to be onpar with that decent morning you just had... only it totally doesn't happen that way. So you fall face down, and it's embarrassing and inexplicable to the people, and it's yet another failure to process. So the ego hurts badly, and all of a sudden you're confused about who you are, and where your place is now.
Better times ahead, for who works for it, though.

 

[Rufous McKinney]

The worst part is the hope, I think.

well, thats a very tough part.

right now I think the worst part of this illness is it deprives you of your fundamental humanity to fully LAMENT.

this concept of LAMENTATION came up recently.

Or to fully engage in emotional content. Which Lamentation can be a component, of.

 

[hapl808]

I don't wish it on anyone though, not even as a temporary "try walking in my shoes" revenge trip against humanity ! although, I know, you're just using it as an expression here.

I wouldn't be using it as just an expression, but a couple decades of being disabled can bleed some negativity into one's personality.

 

[nolongerdiseased]

I really did try to avoid any mention of CFS for a lot of my teenage years. I think I became very timid about it due to doctors and teachers and family and friends not believing I was sick, or that it was real, or that I was just lazy, or this and that... it just seemed like such a hassle that would only have a negative outcome. Now that I'm a bit older (20) I'm a lot more open about it. I'd like to think it helps by raising a bit of awareness, even on a small and more personal scale. Being well helps too, as I actually have energy and emotional bandwidth to talk about it and not have to deal with someone making nasty comments about my illness while dealing with said illness. I do try and frame it around long covid since thats in the news and whatnot but since most of Australia didn't have much covid spread I find most people don't really have a clue about that either...

 

[heapsreal]

Honestly, the older I get the more I hate people 🤣🤣🤣. My wife says I'm turning into a grumpy old man. But sometimes I'm funny.

I've got enough non cfs things now to say I'm broken. Back and knee are buggered. Insomnia, chronic headaches/migraines probably from recurring shingles which is probably cfs related but it's easy enough to not even mention it.

Recent knee surgery I just mentione to the medical staff about migraine/shingles stuff to them and said I've had chronic fatigue post viral stuff for years and have low nk function tested in a medical study. I get strange half interested sort of look but they have no idea and move on lol. Being in the cfs nk study feels like it gives me some justification and not written off as someone trying to rip the system off.

 

[Nord Wolf]

What I’ve found that seems to work fairly well is not telling the random person I have ME or CFS, or PotS. Firstly, most people have never heard of ME or PoTS. And CFS has gotten a bad rap. But if I tell people I have a neuroimmune disease or condition, this seems to appease their curiosity, and settle their questions. After all, ME is considered by many specialists as a neuroimmune disease, even if they cannot “prove” anything about the condition… And the term neuroimmune in many peoples minds triggers visions of Lyme and other more well known conditions. It also seems to trigger autoimmune issues since the terms are so close, and to people who don’t know the details, one seems to go with the other.

I used to work with other Vets and ex-cops in a place that worked with responders (cops, Vets, medics, firefighters, emergency room docs) suffering from job related trauma. So, I know quite a few cops. We’ve had discussions about this very topic. They agreed that if someone tells them they have a neuroimmune disease, or severe neuroimmune disease, then the person is taken seriously. But if someone throws out the CFS title, many cops are not up to date on its reality, and so wrongly, but some will dismiss the claim.

Neuroimmune and dysautonomia are two titles that seem far more accepted than ME or CFS, even if the person has no idea what they are, and so have a harder time placing prejudice and preconceived ideas onto them.