Talking!

[ruben]

One of the things about not feeling well is quite simply you talk less. Now with ME/CFS there are quite varying degrees of severity. So, mild, moderate and severe. I wonder to what extent/ percentage our amount of talking has diminished in our lives as a result of this condition over time. It's pretty depressing really as quite simply we aren't as good a company as we otherwise would have been. Would love to hear comments of others.

 

[Mary]

@ruben - well, I'm not around people that much - either crashing or resting trying to prevent a crash and when I do talk on the phone, family members know I have to limit it - otherwise I risk crashing again. It all takes energy.

When I do feel well and am around people, I am able to talk just fine and sometimes am even good company - But that's not most of the time.

I'm sure none of us are as good company as we once might have been! (btw, I'm considered moderate in terms of ME/CFS)

 

[Nord Wolf]

I used to teach after retiring from military/agency work. Wilderness survival, wilderness living, martial arts, close-quarter hand-to-hand combat, philosophy, etc... I could talk all day without issue. Once dysautonomia, PoTS, ME, neurotransmitter dysfunction and more set in, my ability to speak regularly dwindled rapidly. Complete and total exhaustion, intense full respiratory inflammation, and flu-like symptoms sweep in like a flood when trying to speak for more than a few minutes these days.
Yes, I do miss teaching and that interaction, freely and openly verbally communicating. Nothing I have tried in the past 8 years has improved my ability to vocalize as I used to... not even close.

 

[Hope_eternal]

My son has a hard time talking at times. It’s a very difficult illness. He has to conserve his energy and goes many days without conversation. Yes or no or a slight head nod is sometimes all he can muster up. Before this is loved to joke around,, laughed a lot, and loved to debate, he frequently went out with friends to now completely isolated, no friends and very rarely able to converse. It is very sad and depressing.

 

[doggo]

Having had ME for several decades, I find that talking at social events is surprisingly tiring, so that I try not to have a social event more often than alternate days. I don't like to turn down an invitation because I am going somewhere the previous or next day, but I really need to. As a result I tend to spend most of my time either alone or just with my husband who also has ME.

 

[Viala]

Yes, talking requires higher brain activity that usually uses up too much energy.
Listening to someone speaking, paying attention, focusing on the words and then actively participating in a conversation, all of that is mentally taxing.

I think it's listening and participating that is more problematic, for example I noticed that I'm less tired when I speak more than I listen, which is an interesting observation, less brain work maybe. The topic also matters, the more there is to think and analyze what we hear the more taxing it is. I can listen to an interesting intellectual debate but it definitely tires me more than a day-to-day conversation that is at least slightly emotionally engaging. Maybe that's why no one likes people who can go on and on and on with their monologues, because it drains the energy more. It might as well depend on who are we talking to and how interesting it is. Anyways, it is less talking than before.

 

[Atlas]

I would say talking down 99%

Many days it's 0%

Rarely get a visit and can sometimes have a ~5m talk, maybe a little longer, before start shaking.

That said, there was a period where I couldn't talk at all without crashing. Now I can, but don't do it every day as emotionally engaging is exhausting.

Yes, it's really tragic that many of us can't talk. And when we really want to, when we have something to say, but don't because of the weight or because the words just aren't there. Or because the words finally ready themselves but the moment has passed.

I long to have long and meaningful face to face conversations again. When I was mild I still could, but in hindsight I still avoided it a lot of the time instinctively due to energy limits.

Before this is loved to joke around,, laughed a lot, and loved to debate, he frequently went out with friends to now completely isolated, no friends and very rarely able to converse. It is very sad and depressing.

I was the exact same with my Mum. Often having long thoughtful conversations and debates. I so wish I can be that again. It really is just the incredible effort required to muster up the "social" part of me. If not for that, I am still the same underneath that weight — and can't wait for a day where we can have those conversations again. I'm sure the same is true of your son.

 

[ruben]

Yes, all so very true. It's a bit like visiting someone in hospital, you don't go and visit someone sick in hospital do you, and come away and say you "had a hell of time".

 

[Hope_eternal]

I was the exact same with my Mum. Often having long thoughtful conversations and debates. I so wish I can be that again. It really is just the incredible effort required to muster up the "social" part of me. If not for that, I am still the same underneath that weight — and can't wait for a day where we can have those conversations again. I'm sure the same is true of your son.

I have seen first hand how incredibly hard it is to engage in conversation. It’s heartbreaking what this illness does to people. I can’t wait for the day either and I hope the day comes very soon for everyone affected ME And your beautiful gifts able to shine once again.

 

[splusholia]

Couldn’t talk at all for three years-ish. Can now have conversations, often longish conversations, but I find it easier to spread it across the day rather than all at once. I rest my voice if my throat is swollen, too.

 

[southwestforests]

As this has increased in severity a thing has developed over the last several years where after some amount of time my voice will fade out. Can take more time or less time to get there depending on energy level to begin with, and on who knows what else.

 

[ruben]

Yes, this has become a feature for me. My voice is pretty weak and sometimes a bit squeaky.

 

[Dysfunkion]

The more brain fatigued I am, the quieter and more strained/creaky my voice gets. If I try to go higher in volume the tone gets all messed up and my word forming ability gets even worse. At first I thought my entire speech processing part of my brain was fried, what I actually found is that if I go much slower and talk just above a whisper with no social pressure and I sound alright so in actuality whatever is going on there is just getting much slower. I'll have the desire to talk more as I like doing so but I'll have to give it up when I hit the wall besides very basic communication because my voice gets too weak and my brain can't keep up anymore since process what someone is saying gets too difficult. They'll be another sentence when I'm still processing the first one.

 

[southwestforests]

with no social pressure

It is interesting how social pressure can have a powerful impact on physical health.

 

[Dysfunkion]

It is interesting how social pressure can have a powerful impact on physical health.

Sorry for the late reply, yeah and I have PTSD so it's even worse but I've undone a lot of triggers over the past couple year and only have a million micro triggers left to go.I'll usually feel the pressure mount in my forhead, under my eyes, in my jaw, and directly on my vocal cords. Though if I'm exhausted enough even in a relaxed conversation in a controlled environment like therapymy voice can still get extremely strained and the pressure from just the PEM induced stress can still be bad. I also aren't going to have a conversation just above whispering volume so I tend to need to just deal with it and be embarrassed about my body.

 

[Marylib]

Talking scrambles my brain. I can't cope with that