Posted by: christinelaennec | May 10, 2013

20 months on: Dafter update (by her mother)

First of all, my deepest thanks to the many regular readers who have followed our journey with ME/CFS over the past year and a half.  Your comments and encouragement have been a huge source of support to all of us.  I last posted specifically about how the Dafter was doing in November, and I’m pleased to say that she has made a bit of progress since then.

On the cognitive / concentration side of things, there’s been a slight improvement.  For example, she’s now able to do art occasionally, although today it’s been over three weeks since she was well enough to do any art.  She enjoys photography, although sorting photographs on the computer can be very tiring.  She’s able to follow some t.v. series, i.e. watching new storylines with familiar characters and settings.  She’s able to play certain games on the computer, and doesn’t find this too tiring.  She’s been able to read a little bit in the past two months, as well.  However, concentration remains a big problem.  When she’s very unwell, she’s unable to follow what I’m saying to her, for example.  We have learned never to interrupt her, and also to keep our voices low and noise levels down.

On the physical side of things, she’s been able to get out of the house more often, perhaps every other day on average now.  She’s much better able to move around inside the house.  She monitors her energy very carefully and usually has one meal upstairs every day so that she can conserve her energy and doesn’t get stuck trying to get back upstairs.  She has fewer collapses and they don’t last as long as they did.  Whereas in November she had a collapse almost every day, and often it would be well over an hour before she could speak and move again, now I would say about half the time she gets through the day without a collapse.  When she does have one, it usually doesn’t last much more than half an hour.  It still takes her most of the morning to wake up, have breakfast and get dressed, but she remains determined not to sleep during the day and always to change into her clothes and come downstairs.

Educationally, she is still unable to do much at all, but there’s definite progress insofar as she now goes to a tutoring session for about half-an-hour once a week.  She’s managed three out of four sessions so far, and will continue to do all she can until the end of June when the school year ends.  She has a good relationship with this tutor, and is determined to prove the hospital tutor wrong – the one who in October said the Dafter “wasn’t positive enough,” wasn’t trying hard enough and was “too cosy at home”.

On most days, she has to choose one thing to try to do.  If she has an appointment, a tutoring session or a visit, then she probably won’t be able to do 10 minutes of art.  However, there have been more days in the past few months where she has managed to do, for example, 10 minutes of art and also go out.

So there’s progress, but she is still a very sick child.  Not to be too dramatic about it, but this photo shows you the everyday reality of ME:

The Dafter, now 15, on a bad ME day.

The Dafter, now 15, on a bad ME day.  Photo taken mid-morning.

Most days there are periods when she is too tired to move, aches all over, and is very lonely and fed-up of being so ill and missing out on life.  You can see the tear on her face here.  I also see the dark, dark circles under her eyes, which never go away.  The loneliness of ME is one of the very worst things.  She sees someone her own age on average twice a month, for a visit no longer than an hour.  It’s been over a year since she was in a group of other kids her age.  We have often said that if parents were purposefully keeping a child isolated at home like this, there would be outrage.  But what can you do?  People are busy, and you can’t legislate children’s relationships.   Online ME groups can be helpful, but it can also be frightening to read about other people’s experiences.  When the Dafter is well enough to go out amongst people – and being in a noisy crowd is overwhelming, so that isn’t often – she likes to smile at people and have some interaction that way.

Another difficult thing is not knowing what course the illness will take, or how long recovery will take.  In February 2012, the paediatrician said that in most cases, ME in teenagers takes 4 to 5 years for a full recovery.  We know enough about ME now to know that sometimes it can be much longer.  And we are also very aware that some people with ME – including children younger than the Dafter – would dearly love to be as well as she is.  We have a lot to be thankful for.

My own focus is still guided by my minister’s advice, which he gave me during the initial onset of her infections in the autumn of 2011.  He said to me, “Don’t have a specific outcome in your mind as to how this will turn out,” and “Enjoy her.”  I do enjoy the Dafter’s company immensely, and I only wish that I could do more to help her feel better.  I keep a mental image of her healed and healthy true self firmly in my mind, and I know that one day she will get there.

I’ll leave you with this much happier image of the Dafter on a good afternoon:

The Dafter on a good day, 7 May 2013, Aberdeen.

The Dafter on a good day, 7 May 2013, Aberdeen.  (She and I are toasting each other with glasses of soda.)

As I’ve said before, during this dark time she has matured and grown enormously.  Someone said to her, “Once you’re well, you’ll forget all about having been ill.”  That will never happen.  This illness has been devastating, and has shaped who she is at a deep level.  As well as causing much suffering, it has brought some gifts.  She may be very incapacitated but she is also immensely strong and courageous, and her priorities are no doubt now very different from what they would have been had this not happened.  She’s also had to be enormously creative in finding ways not to lose her mind out of sheer boredom during this time.

She very much appreciates all the good wishes that come her way via my blog, and she would like to write her own update when she can.  Thank you all again, from the bottom of my heart.  We’ll get there!

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Responses

  1. Hi there, I’ve just found your blog. I am so sorry to read of Dafter’s struggles. I have M.E too and completely empathise with how difficult it is to live with. I’m mainly housebound although it sounds like my symptoms may be a bit more stable than hers, but I can relate to the muscle problems, auto immune issues etc. I get out once a week or so. I first developed it at 20 and had a period of remission between 200-2005. It must be so hard for you all dealing with Dafter’s illness and I’m sending you all the positive thoughts and strength I can. I hope there will be some sort of test and breakthrough soon – I live in hope.

  2. I don’t think people realise how isolating ME/CFS is (apart from everything else). Praying for recovery for the Dafter, and for others to be more empathic and caring towards those who suffer in this way.
    Love and hugs, Tina xx

  3. I love this blog, I don’t always comment but reading about how you are all doing is very uplifting. I cannot understand how a “professional” can make such a narrow minded and ignorant comment….. it sounds to me like the “professional” wasn’t very good at their job and was placing their failings on the Dafter. I am so happy she is making a little progress, any progress whether major or minor is always good, the picture of you and Dafter having a little toast was lovely a very positive image, I will continue to keep up with you, sending you all my best wishes. Love and cuddles Linda xxx

  4. Such an honest and touching post on the ravages of ME! The Dafter’s courage in facing this disease is so admirable and your continued patience and understanding are so inspiring. Finding joy and peace with the small improvements and ‘good days’ are so touching. Sending hope and love to your sweet daughter! xx

  5. I think the un-ending sense of exhaustion that accompanies ME or similar syndromes is one of the more difficult things to deal with. [I’ve had fibro-myalgia for about 20 years.] For a young person to face the challenges of a chronic illness or disability includes the pain of being ‘different’ at a time in life when that is hard to accept.
    Each bit of improvement is to be celebrated. We can only pray that there is a positive break through in the treatment of these strange illnesses.

  6. Thank you so much for posting an update on the Dafter! It is good that you show us both the hard side and the good side of this illness. I am so thankful to hear that she has had some slight improvement. How we hope and pray that her full recovery will come sooner rather than later. Your minister’s advice was very good. I must remember that…. Even having gone through some of this myself I often find it hard to know what to say to people that will truly help.

    I will certainly let you know when I find a good lilac perfume. So far, the only perfume I can tolerate comes from Jo Malone and I have only bought one small bottle in Lime Blossom. But, it is on my list as a possibility for Scotland to buy a second bottle, possibly in lilac this time! 🙂

  7. Thank you for the update. Sometimes hearing the specifics can spur us to deeper prayer. On the days I’m running around like a mad woman, I try to remember the home bound and isolated who would love to be able to grab hold of just a smidge of that go, go, go. Blessings.

  8. Continued good wishes for the dafter’s recovery, and here’s to many more of those good days – raises virtual glass of soda!

  9. It’s great to have an update, and particularly one with such positive points in it, but as I read through this post I felt myself imagining being in the Dafter’s situation and wanting to cry with frustration. It could drive you quite mad, I imagine, if you didn’t have the care and support of a loving family or friends. I think it’s very encouraging that she’s determined to prove the hospital tutor wrong and to get dressed every day even though it must seem like a mammoth effort sometimes. She’s keeping her hope alive, and I think her attitude will help her to get to the end of the tunnel eventually. What I find especially amazing about this in someone so young is her patience. At her age I really don’t know how I’d have coped with such a long-term, ongoing and debilitating condition. She’s an inspiration, and we’re all rooting for her!

  10. I’ve been reading your blog for some time now having found it through reading Tina’s The Quiet Home. I’ve wanted to learn more about Scotland which is part of my own heritage through my maternal great grandparents who came to the US many years ago from Dundee. Thank you for posting this update on your daughter and sharing her progress and pain. It’s such an isolating experience for all of you and especially the Dafter that it helps being able to share it with all of us even if we actually don’t know each other in person. Every small step is an encouragement for her and she’s learning the hard lessons of how to pace herself – something that most of us have to learn later in life. Please tell her she’s in my prayers for healing and that she’s able to make the best of her life whatever it may be.

  11. Hi Christine, Well done to both of you for honestly showing the very dark side of ME – that takes a lot of guts.
    I’m wondering if, after you move to Aberdeen, you might find a Christian homeschooling family with a daughter of the Dafter’s age who could be a gentle and understanding friend, who would have the flexibility to meet up in the daytime and not just outside regular school hours. There is a yahoo group for Christian homeschoolers in the UK, of which there seem to be many in Scotland, which you might like to join in the future to try and find some company for the Dafter. It is called Deut6v7. If you can’t find it, let me know and I will try and find a link for you. Alternatively, I could post a message on your behalf when the time is right and forward any replies. Please let me know if I can be of any help. With love, Helen

  12. Glad to read she is making some progress, hugs to you both.

  13. I’m so glad that the Dafter has made this much progress. And I’m very impressed that she makes a point of getting dressed, and not sleeping in the day; that is very brave. I wish so much for further rapid progress for her.

  14. Sending you some warm thoughts. You are so positive, and she’s so lucky to have you as parents. And she’s an incredible person, so full of courage.

  15. I had mixed feelings in reading this; but it’s good to see it posted. My mixed feelings were as you’d expect: pleased that you can see a trend of improvement over the long term; sad that her life is still so limited in terms of scope for enjoyment of things most of us take for granted.

    I see lots of pictures of the smiling Dafter, so no matter how much my head knows about the restrictions on her life, my first thought is always of her as a happy person. This isn’t bad; but it’s not a realistic balance. As you know, I always like to get the whole picture. Thanks for filling in some more areas of the big picture of your lives together.

  16. Hope she will get better and better. Happy Mother’s Day. Christine.

  17. Thank you all so much for your compassionate comments. The Dafter and I did want to try to convey the struggle of ME, without being too depressing.

    Starrystez – all the very best to you. I enjoyed reading your blog – such courage. Yes, let’s hope that more research will lead to a real understanding and treatment.

    Linda – Thank you so much for your kindness, and for following our adventures. Yes, the problem with that particular professional was with her and not with the Dafter, but the damage done was immense.

    mimacat – You’re so right about the pain of being different during one’s growing-up years. I send you well-wishes, and yes indeed, let’s hope they can find some positive relief for such conditions.

    Heather L. – hmm, hadn’t thought of Jo Malone! Thank you for your prayers.

    Kelly – thank you also for your prayers. I know your life is the opposite of ours with so much going on, but no less challenging!

    Martin and Lorna – thank you both very much for the cheers. Lorna, it really is a battle some days to keep the Dafter occupied. The spectre of losing one’s mind through frustration and boredom seems very real sometimes. But somehow, we get through each day and each bad patch.

    Ann – thank you very much for your prayers. I hadn’t thought about what you’ve said, that we all have to learn about pacing eventually.

    Helen – I had thought of this possibility, but didn’t know how to contact people. I’ll see how we go once we’re settled in Glasgow, and I may come back to you on that. I love the group name!

    Katherine and Flora – thank you both so much.

    Mali – I often tell her, truthfully, that she is the bravest person I’ve ever met in my life.

    oldblack – I’m not surprised you appreciated having a bit more of the bigger picture. The way I look at it, the illness is a kind of layer that comes over the true Dafter. To me, the smiling photos are the ones to focus on, because that is the truth of her sunny nature. However, the distress and pain of illness are very real too. Part of the frustration of ME is the number of people who say to me, “She looks fine!”

    Di’ – thank you very much. Mother’s Day here was in March but it’s lovely to be wished well by my American friends in May!

  18. Christine, you too must have a tear in your eye when your daughter is having bad days. I guess like Dory in Nemo you both have to ‘just keep swimming’ One day hopefully sooner rather than later you will all look back on this time and be thankful its passed. I hope it does pass and the signs are looking good with the improvements you’re seeing. Best wishes to you all. x

    • Marksgran, you’re quite right that I do my share of crying. But then I try to let go of the sadness and regret, and just enjoy all that there is to enjoy. And all the time, exactly as you say, we “just keep swimming”. (I’d forgotten about Dory!) Thanks so much for your good wishes.

  19. Thanks for the update, Christine. I just read 2Cor.1:3-5 in the Message version, “All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort – we get a full measure of that, too.” Even in your difficult circumstances now, I see you living this out, and I am grateful for your honesty and encouragement.

    One of our pastor’s shared recently that looking at his area of deepest wounds led to his discovering his area of ministry giftedness.
    Such opposites are strange, but encouraging for me, and I hope for you.

    Love with hugs,
    Gracie

  20. ME is such a horrible condition – hard enough for adults let alone for children who miss out on so much of their childhood. I’m really glad your daughter has seen some progress and I really hope it continues for her.

  21. Glad to see some progress and hope your daughter makes a full recovery from this terrible condition

  22. hi if you email me your postal address I will send you my story and recovery process from me/cfs I am 70-80% better and hope the things I have discovered will help your daughter I don’t use the computer much but am happy to use postal mail I hope I can be of help and would be happy to write to you it is important to do everything to assist the body to recover and not hurt it in anyway and prayer helps as does the knowledge of his love and that we are not forgotten bless you


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