Friday, June 19, 2015

Social Exhaustion in ME/CFS

I love my extended family - but a weekend together is a marathon for me!
I've been thinking about how exactly to describe this bizarre thing where just being with other people can totally wipe me out...I guess "social exhaustion" is as good as any description, though it's still not quite accurate.

I experienced this horrible, bizarre aspect of ME/CFS again last weekend. My mom and her husband came for the weekend. I had invited them - in fact, encouraged them - to come, and I really enjoyed having them here. We had a great weekend - my sons were both home, we watched old home moves, played games, had some great meals, and talked and laughed a lot. All in all, it was a lovely weekend with family.

Except...that I was totally exhausted by dinnertime Saturday - wiped out, worn out, barely keeping my head up, frazzled, and wrecked. I tried to be polite for a while. I really wanted to play a game while everyone was here (I love games!) or watch more of our home movies, but I was just...so...tired. I finally gave up at 9 pm and went upstairs to bed, while everyone else (including my kids!) stayed up well past midnight.

Getting up to my room and into bed was such a huge relief! Lying down flat in a completely quiet room and reading my book felt so good. I think my mom was a bit put out the next morning, when she asked me why my light was still on an hour later. Even after 13 years, she tends to take it personally when I need a break or can't manage being with everyone any more. I don't blame her - it's a hard thing for anyone to understand, how being with people you love could be harmful.

It feels like some of it is energy depletion - no different than doing too much physically - and some of it is over-stimulation. The noise of being with other people, the chaos of a large group (or even a small group), trying to keep track of conversations going on - it all results in just too much for my mind to process. Even a quiet, brief gathering like my book group has this effect on me. How can sitting in my neighbor's comfortable living room discussing a good book for 2 hours with friends be too much for me? I don't know, but when I get home from book group, I am feeling so over-stimulated ("wired but tired") that I have to take a half Ambien in order to get to sleep (which I rarely need any more). I needed to read for awhile this weekend after I went up to bed - to give my brain some time to calm down and recover, to soothe my frazzled nerves..

My beloved neighborhood book group with author Rachel Simon

I think this is part of why I love our camping trips so much and find being outdoors so rejuvenating. Having just the four of us together, with no phone or TV or computer, is soothing, quiet, and easy for me to manage. The natural world - clouds, trees and flowers, breezes - is naturally soothing and a balm from the usually over-stimulating modern world.

Energy-wise, my body reacts to being in a social gathering much the same way it reacts to physical exertion - too much and I crash. It's over-exertion of a different kind, but with the same effect.

All of this is hard for me to accept because I am naturally a very social person. I love being with people, talking with friends or being with family. I had a lot of friends in high school, was president of my sorority in college, and quite the party girl throughout school and into my 20's. I was always the one to organize an outing or a party, the one to want to stay out later, invite more people, keep going. I used to love to host gatherings at our house. Even now, it's hard to accept that something I enjoy so much could have such a negative effect on me.

Fortunately, with all of the improvements I've made over the past 10 years or so, my ability to tolerate social situations has improved, too. I love seeing my friends or going to my book group or, yes, spending time with my family. But my body tells me when it is too much. I usually limit myself to one major social event per week (and yes, going to a book group counts as "major"!). Sometimes, I can manage a second social outing, especially if it's just being with a couple of close friends. I know when I've hit my limits - and my close friends can tell, too! I've been told I visibly droop when I've had too much social interaction, sliding down further and further into my seat.

When I've had too much - like happened this weekend - it is such a relief when I am finally by myself, in quiet solitude. Just a normal Sunday wipes me out this way, with my college son and father-in-law coming over for dinner and everyone home from school and work. I love having everyone together, but by the end of the day, I've had enough. Monday morning - waking up to a quiet house, all alone - is like a soothing balm to my exhausted mind and body. I can recover from social exhaustion pretty well now, but I need that soothing quiet time with no stimulation. It's vital to my well-being.

Is it the same for you? Do you get over-stimulated and wiped out even from the most pleasant social interactions? How do you cope?

10 comments:

  1. I completely understand this, Sue. There is a kind of shut-down that kicks, at which point one simply can't process any more - and it's a very hard thing to explain to other (normal) people. Perhaps extreme introverts (who require solitude in order to re-charge) might understand.

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    1. I think you are right! My husband is much more introverted than me and we were recently joking that my illness put us on equal footing. He said, "I'm so glad you like quiet evenings in the house now!" lol

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  2. Anonymous12:12 AM

    I'm also gregarious and lively by nature but now must live as you describe. I think about people with ME who live in nursing homes and who have little control over the timing and amount of interaction they must withstand. I can't imagine how they cope. Thank you for writing this; it's very accurate.

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    1. That's a good point - I hadn't thought about that. Thanks for taking the time to comment.

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  3. Completely 'get it' too. A few months ago I was encouraged to go and see a play my brother-in-law had written and produced. I found the whole thing exhausting. Afterwards I sat in the theatre bar with family and some old friends I hadn't seen for years (25 years in one case). On the one hand it was lovely to be back in that environment and chat but I knew by that point that I wasn't up to it. In fact very quickly I couldn't chat because the words wouldn't come out of my mouth so I just stayed quiet and smiled a lot. By home time I was physically shaking. Took me 3 days (mostly in bed) to recover.

    Afterwards I was congratulated on 'being brave' and 'getting out and about'. I'm not sure if it was brave or foolhardy.

    Ultimately I wondered if the effort had been worth it

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    1. Nice to hear from you , Cusp :)

      What you're describing sounds very familiar! One problem is that friends and family may see us out and about, but they rarely see the payback and recovery period.

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  4. Anonymous8:30 AM

    hi sue. i am wondering if you have had the LTT ELISPOT for Borrelia test for Lyme. I was negative for years with all the sophisticated tests they gave me, including Igenex, but then, after 20 years sick with CFS, turned up positive on the LTT! now i am improving on long term antibiotics. The LTT test is different...it does not rely on antibodies or the presence of the bacteria, which, in long term chronic infections, are hard to detect.

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    1. I hadn't heard of this new test, so thank you!

      Bottom line, though, is that Lyme is a clinical diagnosis - even the CDC admits that, officially, though most doctors still rely on testing, unfortunately, and think that a negative test means no Lyme. This is why it is so critical to see a Lyme specialist (LLMD) to get fully evaluated - not just for Lyme but for ALL of the tick-borne infections that often go along with it.

      Thanks so much for the new info - I will pass it along to our Lyme doctor.

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  5. Resonate so keenly with your experience, Sue. Thanks for sharing this especially as I recover from an intense family weekend with my son's family staying from interstate. The sustained interactions are so draining. And I loved your description of the joys and trials of book group.

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  6. I totally understand what you mean too.
    My family understands and encourages me to rest quietly when we get together and they can see my fatigue symptoms appearing.
    On the other hand, I rarely socialise with friends anymore. If I do meet up with them, it's usually for no longer than 2 hours so that I don't 'conk out' of energy.

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