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Crashing after joyful get-togethers with family and friends

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by PallasKat, Sep 28, 2014.

  1. PallasKat

    PallasKat

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    I am wondering if anyone else has this experience too:

    I tend to be rather reclusive, social situations make me exhausted and cause pain. This is the main reason why I cannot work full time surrounded by people or spend too much time with others (luckily, I can work from home now doing freelance work).

    I am currently on a wonderful anti-depressant which actually inspires me want to spend more time with people - especially folks I already know and love. I recently re-united with some very old friends, and had some really great times with them this summer. I met with three separate old friends over the last month, and each visit was happy, relaxed & comfortable. Each visit was full of laughter, good food, sunshine and plenty of reminiscing.

    I also have a fabulous family who love to spend time together. I get to live in the same city as both my parents, my brother, sister-in-law and two nephews. There is virtually no conflict between my family members (yes, this is a miracle) and things are always pretty "chill" when we are all together. They like to arrange a family gathering about twice per month.

    Here is the problem: I have started crashing badly after these visits. Sometimes my neck and throat start hurting after a couple of hours DURING the visit - my eyes get blurry and I start getting very very sleepy. My family knows that I get tired, so they are used to me bowing out of things early (always with lots of regret on my part). I then wake up the next morning, in terrible pain, totally exhausted and I cannot think straight. My mind is full of happy memories of the day before, but I basically feel like I have been "hit by a truck". It usually lasts an entire day, sometimes more.

    This makes me sad. And it is totally frustrating. PEM is so mysterious to me.

    I try to pace myself, and limit my visits to only a couple per week - but sometimes things just don't work out that way. It is also so frustrating that now, with this medication, I have more motivation that I have had in the last 10 years to actually SEE people.

    I can understand having a crash after a stressful, tense, difficult, taxing experience - but a happy, joyful, relaxed experience too??

    Does anyone else have this problem? If so, how do you deal with it and how do YOU prepare yourself emotionally and physically for the crash?

    Bestest,

    P-Kat
     
    merylg, Lolinda, ahmo and 2 others like this.
  2. Keela Too

    Keela Too Sally Burch

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    Yes I too find social situations take more out of me than expected. Even events that have no underlying tension.

    I can go out, but if I know something is coming up then I take some low days before hand and then also plan for a couple of low days afterwards. I've written a couple of posts lately about this in my blog (link in signature line) because avoiding relapses is a problem for me.

    Actually, I was out last night, with old friends (3 couples, all of us friends since late teens, and each couple now married 25+ years). It was VERY relaxed, and just a dinner in the kitchen. Hubby and I left at 10pm. I was wearing my HR monitor. My HR rises throughout an event like this, and I know where my limit lies. Quite often hubby starts "giving me the nod", just about the time I reckon my HR is telling me it's time to go. He can see it without needing to know the numbers, I can't!!

    Interestingly, as soon as we were in the car my HR dropped by 30bpm as I no longer had to socialise.

    I wonder if perhaps you could pull back and do fewer of these gatherings? I am limiting how often I attempt to leave home.

    A bigger event needs extra quiet time either side than a smaller one. I often meet with another old friend for coffee - just her and me. It takes less out of me than a larger gathering. Yet even this is a thing that happens only when both of us are well enough (she has Fibro and a lot of similar issues to me). We have a regular weekly time - but usually only make it once every 2 or 3 weeks! LOL

    Thing is, if you go to these events every fortnight, then doing them probably reduces the other things you can do. Perhaps suggest to family that you will only attend one a month, or one every couple of months to give yourself some more recovery time?

    No easy answers for us I think. xx
     
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  3. JAM

    JAM Jill

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    Yes!!! Any emotional response, good, bad or neutral can send me into a flare. Strangely, I have found that if I take a benadryl before going out it helps. Something about blocking the stress hormones. It hasn't eliminated the symptoms, but they are reduced and don't carry over to soreness and exhaustion the next day.
     
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  4. *GG*

    *GG* Senior Member

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    @PallasKat have you ever tried LDN? I started this about 4 years ago now, and a lot of other changes, better sleep med, wake up feeling more refreshed :) (Not great like when I was healthy). And for some reason now I have more endurance, not cured, but better!

    GG
     
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  5. PallasKat

    PallasKat

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    Wow @JAM - that is really interesting, thank you! I might give it a try....benadryl makes me pretty drowsy, but maybe a very small dose would help. What dosage do you take?
    P-Kat
     
  6. PallasKat

    PallasKat

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    Thank you @ggingues - funny, I was just talking to my Mom about this. Your timing is amazing. I will look into it further. Warmly, P-Kat
     
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  7. JAM

    JAM Jill

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    Depends on the event. One or two pills, I'm a lightweight!
     
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  8. justy

    justy Senior Member

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    I have exactly the same experience - laughter and smiling and chatting is as draining as stressful events. I just have to seriously limit my social activites - once a month with a big group of people would probably still be too much for me.

    For me the PEM is caused by just sitting in more upright chairs, rather than laying down and talking - laughing also seems especially bad for causing me PEM.

    I feel like I live all my life on a tightrope!!
     
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  9. ahmo

    ahmo Senior Member

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    @justy
    This is me, too. I've only been fit to relate to anyone, other than my brief communiques with my husband, during the past 6 months. And I'm surprised each time (it's only been a few) that 2 hours of being social, in my home, leaves me utterly thrashed. Thankfully my recovery from these events has improved.

    Socializing became impossible for me very early in my illness. I believed it was due to my dreadful oxygen debt, breathlessness. But I no longer have those problems, and it's evident how much energy relating consumes. I've found the same in the few times I've engaged in a chat here. It leaves me very depleted. I'm not typing any faster than in responding in my own time, but the act of connecting directly, waiting and responding is for some reason exhausting. :ill:
     
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  10. PallasKat

    PallasKat

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    This was VERY helpful for me to read - thank you @Keela Too - it sounds like you have a hubbie who is "in tune" !
    Best, x0 P-Kat
     
    Keela Too likes this.
  11. ukxmrv

    ukxmrv Senior Member

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    If the PEM during and after the visits is worse then you could maybe be doing something else or extra to trigger it? or could the AD be making your CFS or ME worse and the PEM has kicked in?

    I get bad PEM from talking on the phone or having an ordinary happy conversation. When they said laughter was the best medicine they didn't mean ME. Laughter is just another form of exertion for me.

    This means I need to be disciplined and ration my happy social contact. I hate it but need to do just that.

    I wonder if stopping the AD would help at all?
     
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  12. helen1

    helen1 Senior Member

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    I too have had bad relapses after socializing. Like others, my two strategies are to rest up beforehand and to leave early, as soon as I feel the slightest slump. If I was more disciplined I'd probably leave before that. As it is it's taken me discipline to leave at the time I leave now and to accept the awkwardness of that.

    I've had no PEM when I meet a friend for tea. But I do feel the need to visit with family or other groups once in a while.
     
    soxfan likes this.
  13. Keela Too

    Keela Too Sally Burch

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    It's so frustrating. I think the socialising problem is because it is continuous.

    I go out to a dog show every now and then on my mobility scooter - and I cope better with that despite the socialising I do while there.

    I suspect it is linked to the fact that I talk only for short periods, and then take my dog off and find somewhere to just be on my own and not talking.
     
  14. Hip

    Hip Senior Member

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    I get very significant PEM from social situations.

    My theory is that this PEM is caused by brain arousal: in social situations, there tends to be a high state of mental arousal, which rapidly exhausts me, and gives me PEM for two days afterwards.

    When you first arrive at say a friend's house for the evening, your brain arousal level is initially quite low. But then as you get more into talking, discussing, arguing, joking, whatever it may be, I find your brain tends to get more and more keyed up (aroused).

    I think it is the prolonged brain arousal during social activities that causes all the PEM in my brain.

    Arousal is actually a physiological state in the brain. It involves the reticular activating system (RAS) in the brain stem (which is an area shown to have some abnormalities in ME/CFS), and the autonomic nervous system (ANS).

    So I have a hunch that either the RAS or ANS activation during arousal is driving the mental PEM.



    If I confine my mental activities to email conversations and forum posts like these, this I find relaxes rather than arouses my mind, and does not cause PEM.

    However, very tellingly, if I have an instant messaging conversation for a few hours, this exhausts me as much as face to face socializing, because I think the immediacy of instant messaging raises brain arousal levels in a similar way to face to face. For this reason, I never use instant messaging.
     
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  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    You have a very good point there with the continuous issue. When we're at home we're stopping and starting activity all the time, probably without thinking most of the time. Doing things in short bursts.

    Socialising is a constant marathon onslaught on the body and senses. We're carried along on it's wave; by the time we really start to notice its way too late.

    Laughter is definitely a menace for me. Back in the early days when i lived in a silent pitch black room 24/7. The only thing that stopped my mind unravelling was watching Billy Conolly clips for 5/10 mins. The thought that the laughing was contributing to my agony etc. would never have even occured to me back then as the concept is so insane.
     
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  16. Keela Too

    Keela Too Sally Burch

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    I am becoming increasingly aware that social situations are difficult for me.

    I'm still recovering from 3 hours out on Sat night with some friends that I know very well, and where there were absolutely no underlying tensions on the night.

    @Hip and @Hell...Hath...No...Fury.. I think you are right, it is the increase in arousal (even laughter) over time that is a problem.

    Meh!

    Dogs are fine though... they don't talk back. So I'm heading out now on my scooter to a recliner under the trees with my dogs. No technology for a few hours. xx
     
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  17. Hip

    Hip Senior Member

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    I sometimes have experimented with deliberately and consciously keeping my mind relaxed, unaroused and unexcited during socializing. You can do this if you become mindful of your mental state, and don't let yourself get too carried away and excited by the conversations you are having with people, and remain in a sort of "sober" unexcited state. If you have ever practiced mindfulness meditation, you will know what I mean.

    Minimizing mental excitement and arousal in this way seems to help lower the PEM you experience after socializing. But it's not all that easy, because sometimes you want to have a bit of fun by engaging in uninhibited joking and laughing with family or friends.
     
  18. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I've done this too in the past while experimenting, it completely removed the fun aspect for me leaving me feeling distant, removed and observing rather than taking part. Its a hard thing to do in practice.
     
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  19. Hip

    Hip Senior Member

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    Yeah, I know what you mean.

    What I tend to do, though, is just try to keep my mind on an even keel, so when I feel I am getting a bit too giddy and "high" with the excitement of conversation, I stop talking for a while, and listen to people instead. This allows me to calm down and relax mentally. Taking some deep breaths helps too.
     
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  20. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    yeah ive done that too but thats fatal for me, as soon as i stop so to speak is when the exhaustion kicks in and then its time to go home.

    Its crucial to be able to keep going. As soon as a relaxation period is inserted into the equation is the start of the end for me and the winding down process quickly begins. Thats when i'm able to be aware of just how ill i'm feeling and there's no turning back after that point.

    Once the brain is disengaged my body grabs the opportunity to begin its crash as it then thinks its rest time and allowed to do it. I either become a vaguely listening zombie for however long required or i grab my coat to get home before the full crash.
     
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