+100%-

(Thanks to Sue for allowing Health Rising to repost her poignant blog on a frustrating and common problem for people with ME/CFS/FM and their families: when social interactions – even with loved ones – turn exhausting.)

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 movies, 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?

Sue JacksonFor Sue, ME/CFS is a family affair. She’s had ME/CFS since March 2002  and her 19-year old and 16-year old sons also have it.  (Plus her older son has Lyme disease (and two other tick-borne infections)).  She’s produced hundreds of blogs since 2006 about her families efforts at living fully despite the chronic illnesses they face in her Learning to Live With CFS blog. 

 

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