Posted by: christinelaennec | July 7, 2014

Dafter update: excellent news!

My dear regular readers,

As you will know, my daughter (the Dafter)’s life has been blighted by severe M.E./Chronic Fatigue Syndrome for nearly three years now.  If you search the tag or category ME/CFS on my blog, you can read what she has been going through.  In a nutshell, for over two and a half years, she’s been largely bedbound, needing a wheelchair to go any distance outside of the house, and suffering from very bad “brain fog”.  She’s missed three years of schooling; a few months ago she could no longer remember what it felt like to be healthy.  Your comments and support on this blog have been such a great help for our family.  Well, I have some really excellent news!

Just over two months ago, she began a private (i.e. not on the National Health Service) therapy for M.E. called Mickel Therapy.  We, along with her doctors, and friends who have followed this saga with love and concern, have been amazed at the changes that Mickel Therapy has wrought.  Two months ago she was able to be out of bed a total of 2 1/2 hours a day, and was just about managing to leave the house three times a week, with the wheelchair.  Now she is able to do several activities a day (including, recently, going out before lunch), she can walk over a mile, and has begun to take part in life in the world once again.

The Dafter before her party, late June 2014.

The Dafter before her party, late June 2014.

As you might imagine, the past two months have seen us all holding our breath lest another dire relapse befall her, and we have all been in a constant state of adjustment concerning what she is able to do, and the support she needs.  She still needs quite a lot of encouragement, support, and practical help.  But she is starting to be able to have something of a normal life!  I know that her recovery may include downs as well as ups, but I believe that Mickel Therapy has given her a technique to handle her symptoms that she’ll always be able to use.

Recently, she decided to throw a Positivity Party.  She invited all the people roughly her age that she’d met since we moved to Glasgow a year ago – the church youth group that I’d hooked her up with, a couple of girls from the high school she was only able to attend on four occasions during this past academic year, and two teenage neighbours.

Before the party

Before the party

I took her shopping for party food, and we helped set things up.  Then Michael and I withdrew (with Tilly the cat) into our bedroom once the party started, so it really would be her party.  About a dozen kids came, and what a huge success it was!  The trampoline was a big hit, as were the balloons and bottles of bubbles.  She’d been worried we’d bought too much food, but I said, “you’d be surprised – teenagers are like locusts!” and indeed it was all gone by the end.  They played tag in the back garden, and she had a special compilation CD playing out in the summerhouse.  Gusts of laughter reached us through the open window.  She had a few party games up her sleeve: “Honey I Love You” was a big hit.  (You have to say Honey I Love You with a straight face.)  I heard her laughing a deep chuckle that I haven’t heard for a few years.

So we’ve been in a time of rapid transition.  Whereas a month ago, I was organising and accompanying her on all of her outings, she is now able to walk to a friend’s house nearby, or the park, for a few hours.  She’s been so courageous in trying out new things.  She began going to the youth group church’s Sunday morning services (a different church from the one I’ve joined) on her own.  I think it’s wonderful that she has her own church.  She’s desperate to have some independence, and to work.  She’s beginning to do volunteer work in a charity shop, has volunteered for another shop, and last weekend she stayed after church to help distribute food at their foodbank.  I’ve linked her up with a young family nearby with two very active wee ones, and she’s going to be giving the mother a hand at home.  She’s thinking of going back to school part-time in August.

The Dafter, late June 2014.

The Dafter, late June 2014.

Unless you’ve been cut off from the world in a similar circumstance, it’s hard to understand how challenging “simple” things are for someone who’s spent two and a half years in bed.  Being in a crowd, being out on her own for a little while, meeting new people, coping with noise levels – she has been so courageous taking all this on.  She and I have taken the bus twice, and we will keep practising that.  She still can get very anxious about doing “ordinary” things, and I can only imagine how vulnerable and fragile she must feel at times.  But she said to me recently:  “When I get really scared, I just think, What would you rather — to try this, or to be stuck in bed?  And then I can be brave, because I know which I’d rather!” Her concentration is still impaired, but I know that will return to normal, given time.  She was able to do two hours of training at the charity shop, including a Health & Safety induction.  (Those sorts of things are challenging for my own concentration levels!)

I remember when she first fell ill in 2011, my minister met with me.  I think she’d been ill for six weeks at that point, which was already beyond my comprehension as a parent.  He said to me, “When she comes out of this, she’ll have far more knowledge of herself than other people her age.” And this is very true.  She is very perceptive about her own reactions to things, and has such maturity in her choices.  She’s also gained tremendous compassion for others, and a very philosophical outlook on life.

M.E. is a very mysterious illness.  It can be like a noose:  the more you struggle against it, the tighter it will get you in its grip.  The Dafter believes that M.E. probably is a label that covers a number of different illnesses, because her symptoms have been very different from other people’s she’s met or read about online who have M.E. We all are deeply appalled by the ignorance that surrounds M.E. – here in the UK it is classified as a psychiatric disorder, rather than a biomedical condition [edit:  see note below!] and the NHS has downgraded it as a condition only to be reviewed every five years instead of every two.  The suffering, loneliness and isolation that people endure because of this illness can be completely devastating.  And yet no-one really seems to care! Just over a year ago, and despite my very best efforts to arrange visitors, the Dafter was going five, six and seven weeks at a time without seeing anyone other than her parents.  At any age this is dreadful, but when you’re a child?  Okay, it’s not a terminal illness.  But some people have been severely afflicted by it for decades.

We know two other young people diagnosed with M.E. for whom Mickel Therapy didn’t bring about a breakthrough.  The Dafter says she can see why this might be, considering how very different cases of M.E. are.  So we are just incredibly grateful for what it has given her, and consequently us.  Thank you to those who gave us a gentle push to try it – you know who you are!  And thank you so very much to all who have left such kind and caring messages of encouragement.

The Dafter still has a ways to go before she can have the kind of full life that one imagines she would have had without M.E.  But that doesn’t matter.  Time is on her side.

[Edited to add:  the classification of ME/CFS is a point that ME charities have expressed concern about.  As the 2009 article “Classification conundrum” on the Action for ME website says, “many doctors… have regarded the illness as primarily psychiatric…”  ME is classified as a “somatoform disorder, located within the section “Mental and Behavioural Disorders” chapter of the International Classification of Diseases (ICD-10).  In the Diagnostic and Statistical Manual (DSM-IV) somatoform disorders are in a category “within a specifically psychiatric classification”.  I don’t know whether things have changed much in the last five years.  I can tell you that the Dafter’s doctors in Glasgow consider ME to be the province primarily of the psychiatrist and not the paediatrician.]

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Responses

  1. What amazing, wonderful news to read this Monday morning! I am so happy for the dafter and all of you. I pray this is just the beginning and her life will soon be completely “normal” :-) again! Thank you for sharing this great news!

  2. having a wee tear in my eye after reading this. so incredibly happy for you all. how brave you all have been. praying for continued health for your dear one and that it will be uphill from here on. xx

  3. Time is indeed on the Dafter’s side and what a beautiful, wise, and sweet soul she is. Tough times either grind us down like dust or they polish us like gems. I think that the Dafter is emerging as a gem and that there are wonderful times ahead for her.

  4. I’m just thrilled to bits to read this. Wonderful news!

  5. Absolutely wonderful to hear this. I am so happy for you all!

    Mickle therapy is not for me: I completely agree with your daughter that CFS covers a range of disorders. I’m surprised you say that ME is classed as a psychiatric disorder in the UK though: this is not what is suggested by the NICE guidelines or by the Scottish NHS guidelines. There is irrefutable evidence of a viral load being present in ME patients (though not in all patients with other types of CFS).

    Anyway I’m sure you know this stuff already. Really I just want to applaud your daughter’s recovery and her courage – and yours. Hurray!

    • Dancing Beastie, thanks for querying the “psychiatric disorder” thing. I’m going to edit the post to clarify as best I can!

  6. I am crying as I respond to your post, tears of joy for you and your daughter and whole family. How wonderful to have the positives that you have described. May God continue to be with you all in this healing process.

  7. Such uplifting news! Wonderful!

  8. Wonderful wonderful news, I pray that she continues to get better and better xx

  9. Very encouraging news.

  10. That’s such wonderful news. There seems to be a lot of confusion and controversy about what ME is etc. etc. I don’t personally think that the psychiatrists have helped the situation all that much, however, not all think it is their responsibility – a cousin of mine is married to one who was referred a patient with ME and came to my mother for advice, his attitude was one of mystification that he’d been sent a physically ill patient.

    May things continue to improve for the Dafter and may she listen to her body far better than I ever did as a teenager/young adult!

  11. oh wow oh wow!!!! This is just amazing. I am so thankful the Dafter is doing so well. I’m sure you just can’t even believe it! It’s just incredible how your lives have changed so much in three months! I am rejoicing with you and thanking God that he has seen fit to grant the Dafter better health. I can’t believe she hosted a party all by herself and had such a great time — unbelievable when I saw you last year. Can’t wait to continue to hear good news!!!!

  12. What a wonderful news, Christine! :)
    I am so happy for the Dafter and for you all too.

  13. Prayers are answered and wishing the Dafter many more blessings!
    I am very happy for her and will look forward to reading about her
    progress. She’s a very brave young lady.

  14. See all those wonderful comments up there? We are all cheering you on, Ms Dafter! :)

  15. Dear Christine,
    this truly is the most wonderful news and I am praying that it will continue to all go from strength to strength for ‘the dafter’.
    Having just gone through the most heart wrenching experience in our family I can somewhat understand what it means to have wonderful news and seeing improvement. even small steps seem like milestones.
    Thinking of you all, much love
    Heike xx

  16. Dear Christine,
    This is wonderful news! I’m very happy about it.
    Wishing the Dafter all the best.
    T

  17. Such fantastic news!! Wishing you all the very best!!

  18. By far the best post I’ve read in a long time – such brilliant news! I’m *so* pleased to hear how well she’s doing. It must be such a strange but exciting time for you all!

    I have much respect and admiration for the way in which your daughter has faced her illness. And the fact that she would choose to invest her new-found time and energy in charity work blows me away! Most of all, I’m a little bit in awe of her courage in continually facing new challenges. I can empathise a wee bit with how daunting “normal things” in the “real world” can be and love her “Well, would I rather be stuck in bed?” approach to it all. So very brave. I hope she’s rewarding herself for all those mountains she’s conquered!
    I’ve recently taken to using a ‘positive diary’ every day to write down all the little things that I managed to do in spite of how much they scared me. Anyone else reading it would laugh hysterically at the silliness of statements like, “Made a phone call,” or “Went to the garden centre for tea,” but those are my mountains at the moment and it does me good to look back at the end of the day and note how far I’ve climbed. It’s also a nice record of the journey to skim back through on days that are particularly tough.

    Anyway, all of this to say what a remarkable young woman I think your daughter is and that I hope she’s finding ways to recognise some of that in herself!

    She has some pretty remarkable parents too and I’m certain that your love and outlook accounts for much of hers. I’ll be praying that her progress continues and that this is just the beginning of a new and happy time for all of you. God bless xo

    • Laura, I am more persuaded than ever before that there is no way of comparing or measuring what any one person goes through, or how hard they have to work to accomplish seemingly “simple” things. Keep giving yourself credit for your own accomplishments, chief of which must surely be your attitude and perseverance.

  19. God works in such mysterious ways, your prayers have certainly been answered. Such amazing news I am thrilled for you all. God bless.

  20. So very pleased to hear this news. The Dafter looks brilliantly healthy. xx

  21. I’m so happy for her and the whole family! You are a very remarkable and warm family and it’s indeed excellent news!
    Take care,
    xxx

  22. Also thank you for acknowledging that what works for one person doesn’t necessarily work for another.

  23. I was so glad to read this post. I’m glad to hear the therapy continues to work and life is becoming more normal for you all. Long may it continue, so much that soon you will be telling us you are sitting up all night waiting for her to come home from the dancing lol. x

  24. Just wonderful news! So glad to see and hear so much progress! She is such a beautiful girl.

  25. Rejoicing with you!!! xx

  26. That’s great! The Dafter looks so well and looks very pretty indeed. I often feel anxious about trying something new as I am an anxious person in general and I always remember a quote that I read somewhere: ‘A ship is safe in harbour but that’s not what she is built for.’ I find it helps! Great that the Dafter is on the mend. Sandra

    • Sandra, the Dafter tells me this is one of her favy sayings!

  27. Excellent excellent news.. I’m so pleased that MT has helped the Dafter. It helped Jo enormously. She has gone from strength to strength. Your daughter looks so pretty and happy x

  28. What a great post!! So happy to her the Dafter is doing so well. Blessing to y’all.

  29. I read this post with such a lump in my throat – so happy I could cry at such wonderful news! There are no words to convey my pleasure and happiness for your sweet daughter and for all of you as a family. A sweet miracle. xo Karen

  30. Thank you all for rejoicing with us. (Sorry to those I made cry!) You certainly deserved some good news after supporting us so steadfastly over the past months and years of illness. I just wish that everyone with ME could have a breakthrough. I have included “Everyone with ME” in my daily prayers…

    I am going to copy all these comments into a document for the Dafter. I am very proud of how hard she’s worked, and there are few people who have much of an idea what her life and challenges have actually been like.

    So thank you all, very, very much.

  31. Fantastic news, so very pleased for you all. I love the Dafter’s way of getting over her fears, that’s a good outlook. Hope her recovery continues, much love xx

  32. I am so delighted to hear this good news. It makes my heart ache to think of the way she has suffered. She is so young, but has such courage. I know it must be with a heavy, burdened heart that you watch your child suffer. How wonderful to have found hope and some relief. God is truly good.

  33. Just doing a little catching up today, and what a pleasant surprise. I am so happy for the Dafter! Tell her that she is loved from across the pond. Please extend my well-wishes to her! xo

  34. I think I’m equally happy and moved reading this post – and impressed with the Dafter! A Positivity Party is such a wonderful idea, something there should be far more of. And I’ll have to try the “Honey, I love you” game. Simply thinking about it makes me laugh!

  35. Dear Katherine, Relyn, Stacy and Asplund,
    Thanks so much for your kind comments. I have passed on your messages! Asplund, I agree that there should be more Positivity Parties – and yes, Honey I Love You is intrinsically hilarious!


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