How to manage social time ?

Emmarose47

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Ok so here I am in a new area of how to learn to manage ...social time ..
Since become more severe over the winter I was v isolated and we were on lockdown here in the UK ..
Now we are opening up.
This past mth I have been having people over on 1-1 ( I did 2-1 and it was too much ) also going out on mobilty scooter more around the park chatting to people and going to community gardens to see friends I used to volunteer with . Over the time I did my best to pace now I'm in a crash I can see it was too much . I'm trying not to beat myself as this is a new area for me to negotiate . I do however feel v sad and disappointed that I have to yet again limit and in an area that I've been so desperate for .
In my mind I'm going to need to time it right down and feel the restriction .. time limit , people limit, days limit ....groan ..
How can something enjoyable be so detrimental! Surely social feeds the soul so why is it making me crash ..
Isn't the isolation with this thing bad enough ? So we really have to take more punishment ..
Am I destined to be a hermet my whole life ...

On the positive I'm seeing CFS is teaching me to not be such a giver.. I easily give out my energy . I'm going to need to change and be much gentler and lighter to conserve energy . This is no bad thing as I am naturally a pretty out there person .

Could people share there experience in the above .. why social has such an impact on CFS .. your own journey with it and how you've negotiated .. what works for you and how you've learnt to be content with what is ok
 
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How can something enjoyable be so detrimental! Surely social feeds the soul so why is it making me crash ..
Isn't the isolation with this thing bad enough ? So we really have to take more punishment ..
Its SO weird. How CAN something a simple as a little chat be so draining?

I'd likely be challenged first by driving the scooter. Just going around on it likely would be intense for me. Moving at a higher speed, processing the visuals etc. So there is likely some cost in this scootering, and maybe ways to do that with less energy output (maybe park more, cover less ground, take more breaks).

Throat issues really slam me in the chatting dept. That pretty much puts about a 1 hour limit on - a chat or visit.

On the positive I'm seeing CFS is teaching me to not be such a giver.. I easily give out my energy . I'm going to need to change and be much gentler and lighter to conserve energy .
Oh thats very familiar!

This is probably where you could try to work on your style of operation. We perhaps need to be more Zen and more receiving- instead of - well in my case, I want to tell some amusing story (amusing to me). Instead I need to maybe just listen to THEIR story, and nod pleasantly.

I have not found a way to not have to pay for contact with others. I chatted with the neighbor yesterday 45 minutes, and it was SO VERY NICE. He sat down to chat with me. That was- extra nice. My existance felt briefly validated. It seems I am not having to pay out on that one. I kept it short enough.
 

Emmarose47

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Thanks both ...yes I'm finding social at 50 mins my body tells me enough ...so really I need to do 40 as saying bye etc often takes time .
I find like I'm brutely being punished when it comes to having to limit the nice things ...
Just when I've got the physical exertion more paced now this .
What a horrible syndrome this is ..
Yes your right @engal it's not the soul that crashing it's the immune system ..
Thanks for that .
Rufous I've been so reluctant to say the scootering could be affecting as it's bringing me so much joy but yes need to pace ...

Feeling so misrerable today ... Day 8 with little real time interaction ...
I can see how people end it with this thing ...
Not that I will just I can see how people get to that
 
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I chatted with the neighbor yesterday 45 minutes, and it was SO VERY NICE. He sat down to chat with me. That was- extra nice. My existance felt briefly validated.
I'm sure you would be a very pleasant and interesting person to sit and chat with. Or just watch the clouds go by. I miss just being around people in a low key way.

@Emmarose47 It's tough isn't it. I'm feeling quite isolated as well, though I live with family. I've only seen one friend in a relaxed setting outside of family since the lockdown last march. Even before that it was fairly infrequent. I need to email several people but can't seem to manage it.
 

keepswimming

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Yes socialising is exhausting.

I would recommend setting an alarm to go off after a certain amount of time. Explain to people beforehand that the alarm means you have to stop. I find that having an alarm sound stops the temptation to keep going beyond my limits, also it naturally interrupts the conversation, which can be easier than waiting for an appropriate pause to say you've got to go! It may be that when the alarm sounds you have to stop socialising altogether, or maybe you could go for a rest break and then socialise for a bit longer. I have set up the back of our car with window blinds and a sleeping bag so I always have somewhere to take a break. It may feel weird having to set an alarm but real friends will understand.

Also kind of along the same lines as @Rufous McKinney but the way you socialise can make a big difference. Before getting ill I was always very outgoing, enthusiastic, excitable. But that's a big energy drain! Trying to just stay calm when in company can extend how much you can manage.
 

keepswimming

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Also, I just want to say I really feel for you. This illness takes so much away and it's hard to cope with. It's a cliché but I try hard to focus on what I can do, not on what I can't. Even if we can only do a little bit, it's better than nothing, and I try to make the most of it. But it takes time to find your personal level of what you can manage - and even longer to accept it!
Sending virtual hugs :hug:
 

Emmarose47

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Yes socialising is exhausting.

I would recommend setting an alarm to go off after a certain amount of time. Explain to people beforehand that the alarm means you have to stop. I find that having an alarm sound stops the temptation to keep going beyond my limits, also it naturally interrupts the conversation, which can be easier than waiting for an appropriate pause to say you've got to go! It may be that when the alarm sounds you have to stop socialising altogether, or maybe you could go for a rest break and then socialise for a bit longer. I have set up the back of our car with window blinds and a sleeping bag so I always have somewhere to take a break. It may feel weird having to set an alarm but real friends will understand.

Also kind of along the same lines as @Rufous McKinney but the way you socialise can make a big difference. Before getting ill I was always very outgoing, enthusiastic, excitable. But that's a big energy drain! Trying to just stay calm when in company can extend how much you can manage.
Thanks so helpful
 

hapl808

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The alarm is a good idea. I find also my limits even on phone calls is around 30-60 minutes. I don't live with family or anyone and even having someone in my space would be exhausting, so I'm pretty severely limited in the human contact department. I would say soul crashing is an accurate depiction - I'm naturally quite extroverted and social, so the slow but necessary withdrawal from society is another loss. Pushing through those limitations have crashed me and put me into my current multi-year severe state, so I was a bit slow to learn those lessons.

No advice here whatsoever, but I also find the crashes from social interaction as severe as the ones from physical exertion.
 
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Cultivating an aura of 'reserved wiseness' can save a lot of energy. :D

(And then I'll spill something or have a sneezing fit, lol. Such dignity.):whistle:
yeah- thats it!

From my observations over time, I see how my husband is very popular. He is popular because he is actually pretty good at listening to other people. And this is a rare quality.

People flock to it. People don't feel seen or heard. Its a big deal right now, the way we are isolated, etc.

So he rather puts a pleasant look on his face and can receive information with out feeling that he has to spread all his opinions around, too.

And I"m not very much that way, so I appreciate that he has this skill.

A good skill is being able to ask a question- that keeps the other party going. So you just kick back and enjoy their answer, and they go home and say "I met the most fascinating person today in the park! On a scooter".....
 

Emmarose47

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The alarm is a good idea. I find also my limits even on phone calls is around 30-60 minutes. I don't live with family or anyone and even having someone in my space would be exhausting, so I'm pretty severely limited in the human contact department. I would say soul crashing is an accurate depiction - I'm naturally quite extroverted and social, so the slow but necessary withdrawal from society is another loss. Pushing through those limitations have crashed me and put me into my current multi-year severe state, so I was a bit slow to learn those lessons.

No advice here whatsoever, but I also find the crashes from social interaction as severe as the ones from physical exertion.
Thanks hap for sharing ...by doing so you bring an important message which is the social can make us more severe and can be as detrimental as the physical ...
I'm due to get baptised next mth and by the looks of it would be a stupid move in terms of CFS .. I so so want it to happen but it's v unwise .....
 

nerd

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I find social interaction really draining, even though it's needed and enjoyable. One more thing to ration out.
It isn't your soul that's crashing, it's your immune system, so even life affirming activities are metered.
Nicely said.

But there is also the issue of social acceptance and the stigmata. So even if you'd like to invest a complete day in a few hours of social activity, people won't see it this way. Not in the productivity-driven society that Germany is, where disease and disability are just excuses to damage the perfect German culture of worldwide dominance.