Posted by: christinelaennec | March 23, 2015

Lately

[Before I begin this post… you might have seen that a reader contacted me to ask why her comments had disappeared.  I concluded they must have come into the sp** folder and been deleted, and I promised to sift through the sp** for legit comments.  Well, whereas I had been receiving about 30 a day into said folder, since that post I have been receiving over 200 a day!  260 just last night.  I’ve since deleted that short post.  Until things calm down again, as I hope they will, it’s a physical impossibility for me to sift through them all.  Some of them are a page long.  So if you have been leaving comments and they are not appearing, please try again and perhaps also contact me.  My email address is on the sidebar.]

Spring is here!  I was thrilled to pieces to see a blossoming tree the other day:

Blossom!  16th of March 2015, Glasgow.

Blossom! 16th of March 2015, Glasgow.

That was the first tree in blossom I’d seen this year, and in the last few days there have been a few more.  The weather has begun to be less wintry, but the swans in the park are still sheltering, and hungry:

Hungry swans, Glasgow, March 2015.

Hungry swans, Glasgow, March 2015.

They were so agitated it was difficult to count them, but I think there were at least 25 that morning.

Here at our house it has been stressful, for a few reasons as I wrote earlier, but one massive source of stress has now been resolved.  The Dafter, who is still trying to recover from her bad relapse that began after Christmas, was struggling mightily to get to school (averaging about two classes a week, with difficulty) and is still hardly able to read and write.  She has been having such terrible brain fog that on her best days she can only concentrate for about 15 minutes, and on many days, remembering and learning concepts and words has been impossible.  Knowing that she would have to sit an hour-and-a-half-long exam soon was giving us all the feeling of running after a train that is inexorably moving further and further away.

So she has made the difficult but very wise decision to defer her Higher Art by a year.

The Dafter being eclipsed by her father.  20 March, 2015.

The Dafter being eclipsed by her father. 20 March, 2015.

Luckily, her Head of Year was understanding and granted her request.  Her art teacher was less so, and hasn’t been able to believe that she is really struggling.  I asked the Dafter, “Did you explain to her?” She said, “No.  I’m happy to have confrontations with kids my own age, but not with authority figures.  But I’m the one who has to live in my body and suffer the consequences if I overdo things – not my Art teacher!”  I could only give her a big hug and tell her how very proud I am of her.

So on Friday we were all home at the time of the solar eclipse!  I remember the last one, in 1999; we were on the Isle of Harris and it was a clear sky.  I took the children to walk near the beach and the light became very, very odd indeed.  If you put your hand out, there was no shadow.  This time the sky in Glasgow was cloudy.  But we went outside to experience it anyway.  And it was definitely odd – darker, as when the rain is coming on, but with a different cast to the darkness somehow.  Tilly was very excitably running about, and the birds seemed to be a bit nervous:

Tilly gets spooked by the eclipse.  20 March 2015.

Tilly gets spooked by the eclipse. 20 March 2015.

We didn’t have special glasses, but at one point when we were wondering where the sun was located behind the clouds, they suddenly parted and we saw what looked like a crescent moon before it was gone again and we hastily looked away.  Dancing Beastie posted some beautiful photos of the eclipse from further north of us, in this post.

Family selfie, 20 March 2015.

Family selfie, 20 March 2015. When I look at this photo, I see the tell-tale dark rings under the Dafter’s eyes that are my best gauge of how unwell she is.  (As long as she hasn’t yet done her expert application of concealer.)

We wandered about a bit, just experiencing the strangeness; we went into the house, which was really dark, and came outside again to feel the difference.  And we took a photo of ourselves to mark the occasion.  On the news they’d been saying the next total solar eclipse here will be in 2090, and we talked about how we hope the Dafter will be around to see it – do you know the Mary Chapin Carpenter song Halley Came to Jackson?  I felt the same sense of blessing our children’s futures from this moment in time.

Not only was there an eclipse of the sun on Friday, but it was the new moon and also the Vernal Equinox.  A good time for new beginnings, don’t you think?

I know that the Dafter will continue to recover and heal.  It just takes time, and sometimes so much more time than you would imagine.  I was recently thinking back to when she had been ill for only (!) a year.  The hospital tutor came to the house and the Dafter was only able to do a bit of colour matching, and after 10 minutes sitting in the chair she was collapsing off the side.  This went on weekly for about six weeks, and then the tutor said to us all, “She isn’t really trying, and she’s just too cosy at home.”  This was devastating to the Dafter, as you can imagine.  And it was not to be the last time that she encountered professionals whose ignorance of ME/CFS was very damaging.

These days the Dafter is still very unwell, but she has come such a long ways since then.  She gets to school for a few lessons a week, and she likes going to school.  She is able to draw and paint once again.  She’s made friends there.  And although she is still struggling to read and write, she is learning other, very important, lessons:  taking care of herself, standing up for herself, speaking her truth even in the face of disbelief.  The Head of Year said a nice thing:  “She is using the system to her advantage”.  Until then I had felt really frustrated at the limitations of the UK exam system – either this spring, or next.  But that was a very nice way of putting it.

So, on we go!

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Responses

  1. Great pictures, I especially like the one of Michael eclipsing the Dafter. The lighting was indeed strange during the eclipse, and I noticed here that the birds went quiet for a while. How lovely to see the blossom, and such a large number of swans. I do hope the Dafter rallies again soon, but it seems a very wise decision to postpone the exam.

  2. I missed the eclipse altogether, chatting to visitors. That can’t have been an easy decision for the Dafter to defer her exams, she is a courageous young woman. Hope she continues back to better health soon.

  3. Jo says that ME/CFS has changed her life. She recently started getting sore throats again (a warning sign for Jo) and after a bout of long hours working night shifts without a break she felt ‘broken’ her words. She applied for a job, still as a midwife and still within the hospital where she works. She was delighted to learn last week she’d got the job. She is coming out of the birthing centre and will be working in the antenatal clinic. I’m so proud of her she recognized the warning signs and acted on them. 9 to 5 no more nights weekends free and evenings. She starts next month and says she feels better already. The Dafter is right. She knows what she is capable of and no one else can understand that fatigue which is way more than just feeling tired. I still remember Jo saying when she was so ill some days she couldn’t even walk around the bed or lift a kettle, it was a tiredness she’d never experienced before. Keep going Dafter..you’ll win in the end. x

  4. Your daughter shows great courage and maturity in coping with an illness so misunderstood. It is very challenging to feel so ill and to have people scoff, adding insult to injury. I sympathise! There was a report publicised in the media last Saturday, re. a clinical study carried out at Columbia Uni which proves the biological origin of ME. I feel like posting it to all my friends, acquaintances and professionals who think that ME sufferers are just a bit self-indulgent! We are blessed, however, in that people DO recover from ME and it DOESN’T last forever. 🙂

    Thanks so much for the link, by the way!

  5. I did some reading about ME/CFS. I did not know about it. Your cute Dafter will get well. It sounds like she is a good pacer and it also sounds like she has a wonderful support system (YOU and your hubby!) God be with you.

  6. Mercy! Sorry for the trouble you had with your spam folder clogging post that I missed…and now am most curious about 🙂

    I so admire your faith and tenacity in facing the challenges you and your family experience in life, Christine, and I am still cheering you all on with Hope…. from across the pond near the base of Mt. Hood. xx

  7. My thoughts and prayers are with Dafter and all of you. To have this illness at such a young age can be troubling but to see her strength and ability to cope with it is amazing. I will prayer that her recovery can continue and she can go forward with her schooling. On a lighter note, I loved reading your story about the eclipse. And what a fun selfie you snapped to remember this special occasion. I hope your week is off to a great start and that spring has truly arrived in your area. My best to you 🙂

  8. What a lovely selfie of you all, a lovely family. Feel so sorry for all the troubles you all have had to go through due to your daughters illness. I too have had so many thoughtless and downright rude and hurtful comments about my condition (ME). I think most people just think l am downright lazy. If they only knew the constant pain l am in day in day out. I choose to see the future as bright and beautiful, regardless. Your daughter sounds like a very sensible young woman, and with such a loving and supportive family around her, l am sure life will make a turn for the better. Pam

  9. I’m not an optimistic person, as you know. I hear you say “I know that the Dafter will continue to recover and heal“, but I keep asking “What if she doesn’t recover and heal?” So little is known about the disease, and its presentation seems to be so variable, how can you be sure? I guess the answer is that it’s a hope you’re expressing.

    You’re probably wishing that your spam trap had caught this comment. Maybe you need a depressing and unhelpfully pessimistic trap as well? Go ahead and manually delete it – I promise won’t complain or be offended!

  10. Thank you everyone for your interest and encouragement, which I appreciate so much.

    Dancing Beastie, I had meant to put a link in this post to the Columbia study, which we have also been heartened to read: http://www.mailman.columbia.edu/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological-illness I did send it to a few close family friends myself! (And you’re welcome for the link.)

    oldblack, you are voicing a fear that often crosses my mind. Very little research has been done on ME/CFS so it’s hard to say for sure, but it seems to be the case that the majority of sufferers make a good recovery. There are some who never fully recover, and there seems to be a small minority who remain seriously ill for decades. And of course there are moments when I worry that my daughter will fall into one of the latter categories. However, I really try to avoid fearful thinking, because I recognise that it doesn’t help the situation at all. The best thing I can do for the Dafter is remain positive and enjoy life. And I recognise that I have a choice in how I think about the future. So like Pam, I choose to think the future will be good, overall.

    You’re right that I don’t actually know what will happen. But I would say, in my case, it’s more than hope. I really do believe she will recover. All my life I have tried to pay attention to my gut feelings about things, good or bad, and following my instincts has served me very well. In this case, I have a strong gut feeling that she will get better.

    I don’t think your comment is unhelpful, because you’re talking about a very fundamental aspect of life and healing.

  11. I’m so proud of the Dafter for making that wise decision to postpone the exam. That takes so much will power and patience and giving up immediate gratification for what is best in the long run. And how wonderful that she isn’t bothered by what the art teacher thinks.

    Yes, I think you would love the book about Rest I quoted from. I’m sure as I go through it I will be finding more quotes to share!

    As for those “cheap” desserts. The restaurant is called “Bites” and their philosophy is that you buy a couple of tiny little desserts so you can try several things. I think the photo is deceptive because most of their offerings are very small and thus they have to charge small prices. So, it is nice to only spend $2 on a treat, but it might just be a 4-bite treat. 🙂

  12. I seem to have missed out a few of your recent posts. I’m glad Dafter was able to make the decision herself and that it has been taken seriously by the education department, I think she’s doing the right thing. Your photos of the eclipse day are lovely. We also found the light change quite eerie and we too managed to see the crescent shape through a couple of gaps in the clouds, nature is a wonderful thing. Your daughter is so much better than she was when I first found your blog even though I know you worry about her relapse but I’m sure she will continue to improve and may relapse several more times but from a higher position each time until one day she and you will look back on this time and remember it with mixed feelings. I hope so anyway. I’ll be in touch soon. x

  13. I have so much admiration for your daughter and the way she plays the hand she’s been dealt. She strikes me as a real little warrior.

    Those family photos are lovely! Praying for you all as you continue to walk this path together xo

  14. Heather, marksgran and Laura,
    Thanks so much for your encouraging comments, and your prayers. I know that relapse is almost a given, but it’s hard when it is such a big and long-lasting setback. But she is learning plenty of non-academic lessons about life as she goes along. Laura, you’re right, she is a battler. And it’s interesting that you should use that phrase – someone else I know who has been through years of difficulty caring for a disabled daughter recently said to me, “You’ve just got to play the hand you’re dealt.” So true! What other choice do we have?


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