Posted by: christinelaennec | February 6, 2015

Snowdrops and Dafter update: no picnic, but could be worse

To begin with the weather, like Katharine Stewart we had a sunny St. Bride’s day, so presumably we have “the hauf o’winter to come and mair” (half of winter to come and more).  It has continued very sunny, and very cold.  The birdlife in the park has been confined to an even smaller area of the pond as it’s been almost completely frozen over.

Sunny and cold in Glasgow, early February 2015.

Sunny and cold in Glasgow, early February 2015.  Flowerbeds in the park.

Stewart’s essay for February 6th describes a spring-like day in winter:  “The snowdrop month came in with much chirping of finches…  Fresh snowdrops were opening daily and a blue primula was venturing into flower in the shelter of the ivy-covered wall.  there was warmth enough for the bees to fly down looking for their beloved crocuses.  They were not disappointed.” (p. 42)  Well, the snowdrops are out here, but not the crocuses, although their leaves are poking up:

Snowdrops in the park, Glasgow, 4 February 2015.

Snowdrops in the park, Glasgow, 4 February 2015.

On this day about twenty-one years ago, Katharine Stewart had a picnic outdoors with friends who came by:  “I spread a rug on the short, dry grass and entertain them out of doors.  To go inside would be unthinkable.  It’s a day for the first picnic of the year.  Soup and sandwiches, taken under a sky of speedwell blue, in the company of singing birds and happy bees…  There are gales to come and blizzards and floods.  But a February day of sun and calm makes the most memorable entr’acte in the drama of winter.” (p. 43)  We have not had picnic weather this week in Glasgow.  If I have friends stopping by, it would be unthinkable not to invite them inside by the fire.  But I’m sure we will have some “entr’actes in the drama of winter”.

Many of you have been following the unfolding story of the Dafter’s ME/CFS over the past few years, and I thank you most sincerely for your interest, encouraging comments and prayers.  I mentioned a few weeks ago that she had been feeling worse again, and had been hoping it was low iron, but it was not.  She has had a pretty bad relapse in fact.  However, things are not as bad as they could be.

The Dafter taking snow photos, delighted.  Glasgow, January 2015.

The Dafter taking snow photos, delighted. Glasgow, January 2015.

For most of January her health plummeted downwards, which was frightening for all of us.  We were back in the days of her crying with pain, needing a lot of help to move about the house, not able to leave the house very easily if at all.  Since the holidays she has had to drop her volunteering, her babysitting, and a lot of church activities.   She has thought about using the wheelchair again, but we haven’t actually got it out of the loft.  But I’m happy to say that during the past week, her health and energy levels seem to have stabilised and even picked up a bit, which is a great relief.  In the past six days she has managed to get out of the house to do something for about two hours nearly every day.  Sometimes she’s also has enough energy to do a little bit of schoolwork or some other project, but mostly she has to rest apart from those couple of hours of activity.

She has managed to keep going with school to some extent.  The brain fog is once more very bad.  However, the school has been hugely supportive.  She doesn’t have to sit her prelim exam until she is ready, which may be another couple of months, and she will be allowed to type instead of hand-write.  While drawing and painting are now (at last) possible for her to do on most days, reading and writing remain very difficult.  In fact, her language skills generally are clearly affected by the ME.  She muddles her words and syntax when speaking, sometimes to comical effect.  One example is:  “There’s no happy fruit!  I mean, there’s no fruit that I like!”  So doing a two-hour written exam is going to require a lot of training and building up. She has had two writing practice sessions.  She managed to do 13 minutes the first time, and 20 minutes the second time.  I will be her coach for the exam, both in terms of learning the content, and also in terms of helping her build up to taking a 2-hour exam.  The actual exam is at the end of May, so we have some time.

As usual one of the hardest things about being so ill again is the social isolation.  We know that it’s vitally important for her to be with other people, especially other people her age, and for her to get out of the house every day that she can manage.  One of the difficulties is that the Scottish school system for her age involves many weeks of “study leave” in the spring.  There are three weeks of study leave and holiday at the moment.  She has been going into school to work with the teacher on her portfolio, but none of the people she has lunch with are there.  Classes will resume in mid-February, but only for 7 weeks.  After Easter there is study leave for the rest of the year – a big gap, from April until August.  She has never managed to break into the lunch crowd to the extent of being invited to socialise with them outside of school.  In her words, “If you’re not part of the group from the beginning, you’ll always be a visitor.  They’ve known each other from primary school.”  Teenagers are all very busy, and if you can’t manage to come to the group or to school, then in most cases you just have to accept being by yourself.  The internet does help a bit with this but isn’t a replacement for face-to-face contact.  And the Dafter wants nothing more than to be with other people.  As one friend of the family put it:  “She is a gloriously gregarious girl.”

I know that other teenagers with ME/CFS find social isolation a huge problem.  It’s good to know that you’re not alone, but at the same time it’s really very hard to live through.  She was 13 when she fell ill, and has just turned 17.  At a time of your life when you aren’t feeling tremendously confident or sure of who you are, it is easy to think there must be something wrong with you.

The Dafter (wearing her Dad's tie), January 2015.

The Dafter (wearing her Dad’s tie), January 2015.

But she is enjoying life as she can, and she has definitely gained confidence since last summer.  She and we both know that things could be much worse.  For example, she is still able to eat all meals at the table – something she was unable to do for nearly the first three years of her illness.  And she will have learned something from this relapse.  She was already very good at pacing herself, and trying to avoid stress, and she is even more finely-tuned to her physical and emotional state now.  After three and a half years, it would be wonderful if this illness disappeared tomorrow – and I continue to focus on the idea that she will make a complete recovery – but we have to be realistic and just get the most out of each day.

I continue to work with the 40 things that help me.  We are back to a rhythm of life in which either myself or Michael must be on hand pretty much all the time to help the Dafter, with transportation, meals, appointments, life in general.  But I fix my mind on the idea that this is a stage we are passing through again, and that every day is a day closer to her being well, and able to lead an independent life.  I am very grateful that Michael can do so much to help, and I’m grateful to be more settled here in Glasgow, to have the choirs I sing in, and my church.  Even on the most difficult weeks, I can see other people on Sunday mornings and one evening, and those singing-praying times shine like beacons for me.  Michael and I have worked out times for me to have other breaks, get-togethers and fun times in the months ahead as well.

Having written about how unwell she is again, you may be amazed and possibly disapproving when I tell you that today we are heading, for the first time as a family since we left in July 2013, north to Aberdeen.  The main purpose of this winter trip is for the Dafter to be able to see her friends there again.  She has a week off school following, so we hope that she will be able to recover fairly well.  One of the things that we have learned in this journey is that sometimes doing physically tiring things is worth it if you are able to have an experience that brings you joy and emotional energy.

Fingers crossed the weather will smile upon us.  I imagine I may have some photos to show you once we are back!  I wish you all a great weekend.  Let me know if you manage to have a picnic, wherever you live!

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Responses

  1. I wish you all a lovely trip to Aberdeen, l am sure it will be well worth it. One has to take some chances and just live sometimes. Lovely pictures of your girl. Hold on to the hope of better days, and seek the best in the small things every day. We had a bonfire picnic here last Sunday, l cooked the food over the open fire and my boys and husband hit the slopes skiing. More bad weather, snow and winds will come before winter is over, but there is a promise of spring in the air nevertheless. Pam x

  2. I think it’s a great idea to have a change of scene and go somewhere familiar where the Dafter can reconnect with old chums. I’m very sorry to hear that she’s had this downturn, but it seems almost inevitable with a long-term condition of this sort that you take a few steps forward and then one or two back from time to time. The progress she’s made has been remarkable and I have every hope that she will get back on track and start moving forward again in time. A two hour exam is a daunting prospect for anyone but it must be a particularly daunting prospect for her at the moment. I sincerely hope that your break will revive her spirits (and yours) and that the longer days will bring more opportunities for getting out and about. It’s terrific that she’s taking all her meals with you, I remember your photos of her having to be taken food in bed. She’s come a long way since then.

  3. I’m so sorry to hear about The Dafter’s relapse, and I hope she’ll have a quick recovery. And very best wishes for the Aberdeen trip. I’m sure it will do good.
    I think extensive study leave is not peculiar to Scotland; it seems to happen here too. I can see how it must make social contact much harder for The Dafter. And even when there isn’t a problem with illness, I suspect it’s sometimes hard for students to handle working on their own at a stressful time.

  4. Have a safe and enjoyable trip to Aberdeen. As you say, sometimes it’s worth doing something that could be regarded as ‘pushing things too far’ as the pleasure gained is more than worth it. I’m sure seeing the Dafters friends will be a truly uplifting experience for her and having being starved of socialisation with teenagers, one that she is sorely in need of. She certainly deserves a fun weekend after such a disappointing relapse.
    I enjoyed reading Katherine Stewart a few years ago and being reminded of her writings I must look them out and revisit them soon.
    Hope you have a fun time too as being a full time carer must be very draining and I’m always in awe of the infinite patience you have dealing with each twist and turn in your lives.

  5. I’m sorry to hear about your daughter and wish you and your family all the best!

  6. I hope you have a lovely trip to Aberdeen, and the Dafter is bound to feel better for seeing her old friends! The bitter winds have died down and the snow is melting away, so I’m sure it’ll be very pleasant for your visit!

  7. Have a great week away. Prayers said for the Dafter. XX

  8. Such a shame about the relapse, she will be in my prayers. Hopefully a week away will do her good, especially seeing old friends. The weather is picking up here but not good enough for a picnic. Have a great week away.

  9. I am so sorry to hear about her relapse. Have a wonderful and safe trip!

  10. Sorry to hear about the Dafter’s relapse, wishing her a swift return to full strength again. I hope you have a wonderful time in Aberdeen. The weather today is milder than of late, so your travel plans should go smoothly. God bless, xx

  11. She looks lovely. Hopes for the future.xxx

  12. I missed the post about the Dafter’s relapse, but I am glad to hear she is improving. I also think the trip to Aberdeen will be of great benefit to her spirit and thus worth the extra rest she may need upon returning. I am also very glad you have your outings and activities to look forward to and participate in, even in darker days of the Dafter’s health. You are so right — she WILL get better (my sister did!). Each day is a step toward recovered health. Despite our location in the American Deep South, we are still in the midst of winter. However, Saturday and Sunday promise atypically warmer temps, so I may get an impromptu picnic when we’re at the barn! Blessings for lovely weather for your trip north!

  13. Have a good visit with friends in Aberdeen. Mental wellbeing and joy certainly have a bearing on physical health and hopefully a happy visit will give the Dafter a boost. I agree with Lorna that a few set backs from time to time are probably inevitable with such an illness. We all hope for the ultimate recovery.

  14. It sounds as though things are improving again slowly but surely so lets hope the recovery will be as dramatic as the relapse. You can but hope! Have a great time in Aberdeen I’m sure I speak for more than myself when I say we look forward to your photographs. 😀 x

  15. I hope you have a wonderful time on your trip to Aberdeen. And, I will continue to pray for Dafter’s recovery. I hope that she has a wonderful time on this trip you’re taking. I wish you the very best 🙂

  16. Wishing you a lovely trip to Aberdeen and continuing to pray for the Dafter’s recovery. Hope this will be a good trip for you all. 🙂

  17. Your daughter is a very courageous soul – willing to keep trying her best despite pain and social isolation. You must be so proud of her! Her lovely spirit comes through in her photographs – there is a sweetness there, and a true zest for life that shines in her eyes. I think it is wonderful that you are taking a family holiday together. It is something to look forward to in the planning, and something to fondly remember at the end. Hopefully you all will have some beautiful weather to enjoy – perhaps not a picnic, but something equally nice. I love reading journals such as this, it helps you take notice of those little offerings of nature. Wishing you a safe and lovely journey. xo

  18. Ah, more lovely pictures of your gorgeous daughter – what a wonderful smile she has. Funnily enough, we planned a picnic yesterday, made it, drove to the beach (north Kent) and ended up eating it in the car due to the snow! I would love to have an outdoor picnic on my birthday one year (Jan 12th) – managed another car one last year, but didn’t even leave the house this year! I think I will have to travel to the southern hemisphere if I am ever going to achieve that goal! Aberdeen sounds like a brilliant plan; healing comes in many ways and if the Dafter is well enough to make the journey then grab the opportunity! I loved reading your list of 40 things and it has reminded me of a blog post I keep meaning to put up – watch this space! Lots of love to you all.

  19. I hope the weekend away is uplifting and spurs on her recovery

  20. So glad that in the midst of a hard time you are able to take this trip, Christine. I continue to ask God to bless you and yours and especially for steady healing for Dafter. xx

  21. I too am sorry to hear of that your daughter is suffering so much again. I hope your trip to Aberdeen will help her in every way and that she benefits greatly from being with her old friends. She has the sweetest expression and smiley eyes. She is clearly very brave. I appreciated the link to the 40 things you found helpful as I have two young adult children who are learning to cope with recently diagnosed arthritis. We Sydneysiders are enjoying wonderfully warm weather just now so I think a picnic would be a great idea but perhaps I will settle for some time in the garden. One of my favourite author’s who writes about Scotland described an unusually warm Winter’s day as” a day stolen from Spring.” I will try to buy Katharine Stewart’s book online as I have not located it in our local libraries here. In the meantime I enjoy how you are sharing it with us. Thank you.

  22. oh my darlings, what contrasts are in your post. Ofcourse Glasgow is a beautiful jewel all year but this time is beautiful for its subtleness..and good times to come. Dear Dafter, I so feel for you, I was rejected from that programme we spoke of, but perhaps you should apply via your Gp. We have to grab the good days by the throat hun, and yes rest, build up the other days towards that goal. My thoughts and prayers are with you. It may turn out that this is our new normal, back and forwards to the edge, but you deal with it with such class Dafter, you are still my inspiration.

  23. I hope the time away is an uplifting one for all of you xo

  24. It’s perhaps not a coincidence that you’re writing about the paradox of snow – how pretty it is to observe and yet too cold to be comfortably outdoors in it and it has the potential to cover the ‘brave’ crocuses – and also be writing about the Dafter’s paradoxical situation – so clearly such a deeply beautiful and joyful person and yet stricken by a condition which can temporarily hide that joy and sap her energy.

    Clearly that’s not Michael’s “Old School Tie” the Dafter’s wearing. I wonder where he does wear it?

    • (Somehow have misplaced my comment!) Oldblack, you are very right about the contradictions. Joy trying to fight through the illness. The tie is one that I made Michael years ago. It’s a work tie, for when the occasion demands.

  25. Sorry to hear of your daughter’s relapse, hope she keeps improving!

  26. Dear all, thank you very much for your kind comments and good wishes. They mean so much to us!


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