Posted by: christinelaennec | March 30, 2015

A fun cèilidh and an Easter cake

Thank you everyone, for your lovely comments hoping that the Dafter made it to the cèilidh.  She did!  Our Son came for a visit on Saturday, and she was feeling pretty awful.  When Our Son saw how ill she was, he said, “Do you think she’ll be able to go?”  I said, “Knowing the Dafter, and since she’s been looking forwards to this for months, I think there’s a good chance.”  She hauled herself off, and re-emerged dressed and ready:

Our Son and the Dafter before the cèilidh.

Our Son and the Dafter before the cèilidh.

She wore a silver lamé dress that she found at a vintage shop, with a Katharine Hamnett leather jacket from Oxfam, along with fairy wings, and black lipstick (“my boy repellent”).  She wore a necklace I made when I was her age, and borrowed the tiara from the stuffed tiger.

We all went.  Our Son was surprised at how groovy the Dafter’s church is.  He didn’t dance, but Michael and I enjoyed doing couples dances.  The youth group had a wonderful caller, and the dances were both to traditional cèilidh band music, and also to pop music.  I had such fun dancing the Gay Gordons to CeeLo Green’s, “Forget You”.

The Dafter had a great time.  She managed to dance quite a bit.  Here is a phone snap of her waiting to be spun around in an Orcadian Strip-the-Willow:

At the cèilidh!  Dancing an Orcadian Strip-the-Willow.

At the cèilidh! Dancing an Orcadian Strip-the-Willow.  You can see the fairy wings here.

In case you’ve never had the good fortune to go to a Scottish cèilidh dance, they are great fun.  A lot of the dances have links to North American square-dancing traditions:  the Virginia Reel, the Canadian Barn Dance, Strip-the-Willow, the Boston Two-Step.  I presume the North American dances crossed the Atlantic from here, but the opposite could be true.

I only danced couples dances and sat out the group dances because my old back injury has flared up.  Some of those young men – I didn’t get a photo of the kilted ones – can spin even elderly ladies like myself pretty darn hard.

The Dafter had a joyous time.  We came home just after 10, which magically became 11 as it was Spring Forwards night.  Needless to say she has taken a couple of days to recover.  She said something recently which really struck me.  She had been on a bike ride, and when she came home she said, “One of the problems with being ill is that you can’t share your achievements with people because going for a bike ride doesn’t fit into their expectations of what you ought to be able to do when you’re ill.”  Before the cèilidh she was worried that if people saw her dancing, they would assume she is malingering the rest of the time.  Nothing could be further from the truth, and if people had any idea of the pain and fatigue she feels on her best days, they would probably be shocked.  I advised her that people who understand about illness would realise she would have a price to pay afterwards, and that she shouldn’t limit herself for the sake of the people who don’t understand.

It really struck me forcefully, the truth of her phrase “you don’t fit their expectations” of illness.  So very, very true at times.  I often think that having ME/CFS is like what having epilepsy must have been like when people thought it was caused by demonic possession.  Interestingly, a study at Columbia university has recently demonstrated a biological basis for ME/CFS.  Apparently it’s like a post-viral “hit-and-run” event where the immune system goes into overdrive and produces too many of something called cytokines.  The body is literally at war with itself – something the Dafter has said more than once.  The study found that the body usually begins to stop overproducing cytokines after about three years or so.  I know there are people who have been suffering for decades, who would dispute this timeline.  However, the study is significant because this is the first time that an identifiable biomedical explanation of ME/CFS has been discovered.  So we are moving along slowly from “it’s all in your head / it’s just those pesky demons”…

The Dafter slept around the clock and then some, but wasn’t too immobilised the next day.  A friend came over for a cup of tea and brought us a beautiful gift:

Gorgeous Easter cake made for us by a kind friend.

Gorgeous Easter cake made for us by a kind friend.

So it was a great weekend!  I hope yours was as well.

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Responses

  1. Sounds like a wonderful weekend, I am so glad that the Dafter was able to go to the dance and that you all such a good time. Lots of fun had and lots of memories made.

  2. So glad she got there. And she looks just fabulous!

  3. She’s a very wise young lady. I am delighted she gave it her all and said to hell with the consequences for one evening. Glad she didn’t suffer too much afterwards either. She has a very positive attitude and this more than anything is probably her saving grace in balancing her illness. Good on her!

  4. I am so happy to hear that your daughter was able to attend and enjoy the ceilidh! I think the medical professionals have so much to learn about auto immune diseases, and I’m glad to hear of the research in the area of ME/CFS.

  5. So glad she had a lovely time, sounds like great fun. Sorry about your back problems. Nice picture of brother and sister. I can really relate to what she said about “not fitting into peoples’ expectations of being ill.” I always look bright and cheerful when l go out and people say, with an undertone, “oh don’t you look well, you must be feeling much better!” Little do they know how 90% of my days are. Let people think what they like. Your girl deserves all the fun she can get. Blessings, Pam in Norway

  6. I understand what the Dafter said about how other people might judge her. I would feel the same. The obvious response – that what such other people think isn’t important – is wrong. Whether we love them or hate them, whether we’ll never see them again or we see them every day, my experience is that the attitudes of other people are a powerful force to be reckoned with.

    • oh, one more thing….Easter cakes. Was this “just an ordinary cake” given at Easter (I’m sure it wasn’t ordinary, but you know what I mean), or is there a Scottish cake tradition connected with Easter? Apart from hot cross buns, we’re 99% chocolate oriented here in Australia, with a large proportion in egg-format (and rabbit format a close second).

  7. Yay for your happy weekend! I especially love Dafter’s choice to wear
    wings 🙂 My husband had physical challenges from infancy on and endured the inaccurate judgements of many, unfortunately even from me sometimes, so I especially appreciate what you are combating and am still cheering you on to hope and healing. xx

  8. Look how pretty the Dafter looks! I’m so glad she got to go out although I can more than imagine how she must have felt afterward. you are right that people don’t realize how much of a “splurge” it is to do something like that. We are off to the specialist for Andrew tomorrow. He’s waited nearly a year for this appointment for his muscles. Hoping for something….hope to write soon.

  9. It’s so nice to see your lovely children enjoying their time. How nice that you were able to attend as a family. I do hope Dafter takes it easy and gets rest. It warms my heart to see her dressed so lovely and smiling. My best to you and your family.

  10. What a lovely story, and very interesting points about the illness. I have family members with auto-immune deficiency diseases, and I believe it is true about how they pay for the work or play they do. The Dafter looked so pretty in her outfit, and that cake is great. I may have to make something similar for Easter. Also, those dances we have here were for sure brought from “the old country,” as we say around here.

  11. What a happy post! Lovely to see.
    I too read the research findings from Columbia: they simply confirmed what I had suspected all along. I feel like waving the report under the noses of everyone I meet (though I don’t) – it’s hard when even your good friends suspect you of malingering. However, finding out what is going in the body of ME sufferers is the first step to doing something about it, so it is very positive news.

  12. (Sorry, have repeated myself from an earlier comment – blame the brain fog! 😀 )

    • No worries, this is a brain-fog friendly blog! (Try saying that a few times quickly…)

  13. Glad that you all had a joyous time. I loved the Dafter’s ‘boy repellent’! No wonder she was tired next day after the dancing. A physiotherapist once described ceilidh dancing as ‘an extreme sport’ after I’d injured myself at one.

    In answer to your Aberfeldy question about the B&B – sadly I don’t think it is easily reachable by public transport. It’s several miles outside of Aberfeldy on a minor road. You could always enquire of the owners.

  14. I love these words: “The Dafter had a joyous time.” And she looked so lovely doing so. I’m so impressed with her insight about how we all have different milestones to celebrate and sometimes they are invisible to others. Such wisdom!

  15. So glad you’ve all had a great family outing to the cèilidh. The dafter looked fantastic. Love the tiara. Have a lovely Easter.

  16. Thank you everyone for your comments and good wishes, and compliments to the Dafter. She was very boosted by them.

    Constance Ann, I couldn’t agree more, the medical profession is generally shockingly ignorant about these conditions.

    Pam and Gracie, I think almost everyone who suffers from a chronic condition has this experience. As oldblack says, what other people think is powerful. But in the end, other people’s ill-informed opinions are just opinions.

    oldblack, I agree that other people’s opinions are a powerful force, but that we also can decide whether to give them power or not, to some degree at least. And that works both ways: look how many people are ruined by adulation and celebrity. As far as Easter cake goes, this cake is a delicious coffee-flavoured cake that our friend treats us to year-round (lucky us!). I think in Britain it’s as in Oz, 99% chocolate, with hot cross buns thrown in, so to speak. “egg format” and “rabbit format” made me laugh!

    Gracie, it hadn’t really occurred to me about her choosing to wear wings – such a powerful metaphor! Sorry to read of what your husband endured. People really are remarkable, once to you get to know them.

    Linda, (re “boy repellent”), yes the Dafter makes me laugh a great deal by her quips and take on life. She is not in the least bit interested in boys and finds the ones over the age of 12 (until that time she says you can boss them about quite easily) pretty annoying.

    Cathy, thank you. She is very wise. Certainly much wiser than I was at her age, and possibly than I am now! The child is the parent of the mother, etc.!

    Martin, nice to see you here! The Dafter loves her tiara and recently had a moment that had me choking with laughter when I read her text telling me about it. She wrote, “Major brain fog incident. Got dressed and decided to wear my tiara. Then went out for a walk, but forgot to take the tiara off. Couldn’t understand why people were staring at me!” What I love about that little story is her inclination to wear her tiara around the house! She is very big on anything to lift her spirits.


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