Posted by: christinelaennec | February 23, 2014

Update on the Dafter: two and a half years of severe ME/CFS

This post won’t be of interest to everyone, so feel free to come back another day!

The Dafter on a recent good day - out of the wheelchair for a few minutes in the park.

The Dafter on a recent good day – out of the wheelchair for a few minutes in the park.

Many of my regular readers have been incredibly kind in sincerely wishing our family well during our daughter’s (the Dafter’s) illness.  It’s been some time since I wrote an update about her (here), though I’ve mentioned her in writing about our family life.  How is she?  Not great, but could be worse, is the answer.  She’s been wanting to write an update on herself for me to post here, but that’s been too difficult for her to manage.

It’s a well-known fact that ME/CFS (myalgic encephalopathy / Chronic Fatigue Syndrome) has its ups and downs.  The Dafter was doing better last summer after going on iron tablets, but suffered a severe setback in August, after our move to Glasgow and trying to go back to school part-time.  In October 2013, she was only able to be out of bed a total of 20 minutes a day, and that was a struggle.  By December, she had built up to being out of bed a total of an hour and a half a day, and was able to get out of the house (with the wheelchair) about three times a week.  Before Christmas, she went to school on two occasions for about twenty minutes each time.

Her concentration was still very badly affected, but improving a bit.  For example, at Christmastime when she forgot what she was going to say she could usually remember within a few minutes – a big improvement.  Reading has continued to be too difficult.  Writing is challenging, as is watching things on television that require a certain amount of concentration (for example, we tried to watch an episode of the Waltons recently, but she couldn’t follow it).  At Christmastime she finished a drawing that she’d worked on in very short periods of time over two months.  Although drawing and painting haven’t been very possible, photography has been a joy for her.  Sorting through the photographs after taking them is tiring but she can do it in short spurts.

We had a lovely holiday at Christmas, with lots of company, and she was on her feet quite a lot inside the house.  Then she caught a cold, which turned into a chest infection, and we have been through a real “two steps back” phase.  She hasn’t been able to go back to school at all, and hasn’t been able to get out of the house much.  She’s been working on a paragraph for school but hasn’t managed to finish it.  Tackling schoolwork is very stressful for her, and after you’ve missed two and a half years of school, it doesn’t get any less stressful.  She has a lot of pain in her body – the myalgia (pain) of Myalgic Encephalopathy and also fibromyalgia.  Michael and I give her a lot of foot, leg and back massage to help ease the pain, as well as give her painkillers.  She cries from pain very often, which is hard.  The physiotherapist has been very helpful in teaching her how to sit and lie, and do some basic strengthening exercises.

I won’t go into the many, many treatments and therapies which we have tried in the past, are currently trying, and are considering trying.  There are a number of theories about what causes ME, but the fact is that so little biomedical research has been done on it that no-one really knows for certain.  Recent research at Newcastle shows that there are differences in how cells develop in the muscles of people with ME versus healthy people who are sedentary.

The greatest struggle for the Dafter, as you can imagine, is keeping her spirits up.  She has very little contact with other people, although the online world is a great blessing.  Because she’s not often able to go out, I have done my utmost to find other young people for her to meet.  She has our former neighbour, and another teenage girl across the street, who visit her from time to time.  She also has been visited by a local church youth group.  A local Association of Young People with ME group is being set up, which she may be able to attend.  And she meets any friends of mine who come to the house for a cup of tea.  Our neighbourhood here in Glasgow is much livelier than where we were in Aberdeen, and it’s not unknown for people to pop in unexpectedly.  Her bedroom looks onto the street and she feels more a part of the outside world than where we lived before.

I wake her up starting at 8 am, but it often takes her an hour before she can sit up to eat her breakfast from a tray in bed.  In the morning she rests, on her bed but sitting the other way.  She passes this resting time by watching various children’s tv shows (she can follow a tv show if there aren’t too many new characters or situations, so series are great), doing jigsaw puzzles on her iPad, and playing games like Bejewelled.  These are all activities that take minimal energy but keep her from going mad with boredom.  She can’t manage to get out of bed for long in the mornings, but on a better day, once she’s had lunch (also eaten in bed – I almost always join her for lunch in her room), and another wee rest, she may be able to get dressed and from there leave the house.  The earliest she can leave the house is about 2 pm.  She aims to get out of the house on Mondays, Wednesdays and Fridays.

On a rest day, or a day when she’s too tired to go out, she stays in her room in the afternoon but tries to sit for short periods of time at her desk, perhaps to do some art if she’s able. She also tries to do her exercises and to walk around a little bit.  Sometimes she comes downstairs, which is great to see.  She and I have certain projects that we do together – she’s not able to do much in the way of crafts, but sometimes we can do simple things (decopatch), or sing songs together, or we dub old family videos.  On a bad day I try not to leave her alone for too very long, and I give her massages to ease the pain.  Sometimes we do a little waltz together, just to get her on her feet but with a bit of support.  We can be very silly – because you have to laugh.  And the Dafter is very funny.  The other day she turned to me and said, “I could tell you the story of How I Met Your Mother.”  That still makes me laugh!

She comes downstairs, with our help, at tea-time.  She has been trying to sit up to eat tea at the table but recently this has almost always been too painful and difficult.  Many evenings we all eat off our laps in the living room.  We watch Neighbours together – always good for something to talk about! – and she has begun being able to watch the Scottish news with us afterwards, which is great in terms of building concentration. Evenings are family time, though if I haven’t been out of the house all day long I may go for a walk and sometimes Michael comes with me.  Her friends are often online in the evenings and so she may have more “company” then.  And we usually have a DVD box set that we watch one or two episodes of.  She has seen all of Friends three times now.

I set things up for her shower about 9 pm and stay nearby in case she has a collapse.  She often gets a bit of an energy surge in the evenings (like most teenagers) and can be very chatty then.  Getting ready for bed is a slow process because she needs to rest frequently.  Bedtime is about 11:30 pm.

She was 13 when she fell ill, and she just turned 16.  She cried for an entire day the week before her birthday.  She felt she had nothing whatsoever to show for the last two and a half years of her life, and was imagining that all other girls her age were having special parties with all their friends.  I didn’t try to jolly her out of it, because I felt she really needed to grieve the devastating impact this illness has had on her.

However, as hard as the situation is, we all know that it could be worse, and indeed it has been worse.  There are other children who are completely bedbound with ME, and we know there are young people who have had ME for over 10 years.  We believe that the Dafter will someday, somehow, recover.  I think she’s incredibly brave – I can see the struggles that she goes through every single day.

What are the upsides of this situation?  The Dafter herself is determined to be as happy and positive as she can be.  I think she has matured enormously, and has even more compassion for others than she would have had.  She’s much more attuned to nature than she used to be.  She can no longer remember what it was like to be well, but she has dreams that she can walk half a mile without having to stop to rest.  She still looks forward to her breakfast when she goes to sleep at night!  As a family we’re very close.  She’s very reflective, and interested in philosophical and spiritual questions about life, particularly about suffering.  She’s also interested in the debate on Scottish independence, which she will have a vote in.  She and I have a lot of time together, and many chats about various things.  She shares her music enthusiasms with me, and in her words “we fangirl about McBusted together”.  When Michael is looking after her, they invent silly games (recently, a combination of curling and football played with bottle caps on the dining room table to try to extend the time she could sit up).  They also have long bouts of Twenty Questions and something called the Yes/No game.  Perhaps the biggest plus of our experience with ME is that we really appreciate even the smallest things:  she got outside in the garden, hooray!  She walked more than 50 paces, hooray!  It’s raining, she loves to be out in the rain!  The sun is shining – let’s have a party!

At least these days she can get up and down the stairs without collapsing and getting stuck, she is able to go to the loo unaided, and she can get her clothes onto her body by herself, even if it is a slow process.  These last two (loo and getting dressed) are significant to our family because if she doesn’t need my help with them, it means that I can take some breaks from caring for her.

I thought I’d write about how I’m doing in a separate post.  Okay, all things considered, is the short answer.

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Responses

  1. I have read your post with a lot of interest and I’m deeply touched by it.
    You are all so brave and there is so much warmth and love in your family.
    I think about you…

  2. Christine, thanks for the update. I will continue to pray for healing for Dafter, and that the joy of the Lord would miraculously be the strength for each of you during this difficult process. Sending you all hugs of encouragement and wishing I could be of more practical help. xx

  3. Reading it all together in one post has brought it home to me even more what you are all going through. You and Michael are doing a fantastic job, I admire you both very much. The Dafter is in my prayers and in my heart. Big hugs, xxx

  4. Thank you for writing such an honest post.

    I hope that the Dafter continues to improve little by little and that your post helps those who have no personal experience of ME/CFS to understand it a little better. AYME is a great charity, we like the focus on keeping everyone’s spirits up (a nice antidote to the sober reading that is Action for ME, important as that is) and certainly humour helps a great deal – we have lots of silly in-jokes that help us get through the day smiling!

  5. Hello Christine,
    My name is Kalkidan , and I am an 18 year old living in Wisconsin. I recently stubbled upon your blog and was immediately intrigued by your posts. I have made my way through several of your post and took time to read those regarding Dafter. I am truly sorry that she has to endure so much pain,but she has such a strong mother carrying her through this time of struggle.I know you have mentioned that Dafter has little contact with people and you have tried your best to find young people for her to converse with. I would love to extend my hand in friendship with Dafter, if this would be of interest. I will continue to keep your family in my prayers! God bless and take care !

  6. Thank you for your update, it’s lovely to read how the Dafter is doing, I remember she first became ill when I was very sick in pregnancy and I used to think about her as I was stuck at home really not feeling like doing anything at all. I also would like to say to the Dafter not to get too upset about being 16 and not being involved in lots of fun parties and exciting things. I was quite a shy teenager and never did things like that and I used to get worked up about it and worry there was something wrong with me. But you know what, your teens are a strange time and only a small part of your life, I think they are over-rated. I’m still not a party person but I gradually came out of my shell and enjoyed my 20s and 30s much more. Just as I came out of my shell, you will get better and do lots of interesting things, trust me! I have a friend who had ME at your age for several years but she is now in her 20s, went to university, travelled, got married and has children. You’ll get to follow your dreams too x

  7. I’m really sorry about the ‘two steps back’. But congratulations to the Dafter on the things she has been achieving in spite of this awful illness. And I think Katherine is right that one’s teens tend to be over-rated. I can remember being quite miserable about stupid things, in spite of being inn perfectly good health. I think it’s a huge achievement for the Dafter to be able to be as positive as she is. And I so much wish for her recovery. Two friends of mine have managed it eventually, from the same illness.

  8. Thank you for sharing, Christine – it’s heartbreaking and heartening to read all at the same time. xx

  9. Thank you for the update and for sharing with us. It really is a two steps forward one step back process isn’t it? Less a journey in a straight line, more a slow dance in the right direction. You are parenting her so well and with such love.

  10. Christine, I so admire you and your family, especially your daughter. Hope difficult to have those feelings of isolation when you are so young and your body does not allow you to do what you would want to do. I was happy to hear that there is hope for her recovery. I pray for that to happen sooner than later. I also will continue to pray for strength for you and your husband and many friends and neighbors to assist you with your days. It is good to hear that you have lots of laughs. Those are really the best ways to get through things such as this. God Bless you everyone!

  11. thanks for your update, Christine. you and Michael are lovely, caring and patient parents for your daughter. I am sorry that she has had such a hard time and I hope that she will continue to have much improvement. xx

  12. Very nicely written, Christine. Reading what you all have to go through on a daily basis made me feel exhausted, it must be a relentless struggle for each of you to keep your spirits up and stay motivated. For the Dafter it must be especially difficult, and hugely frustrating at an age when her peers are gaining their independence, but it must also be extremely hard for you and Michael. I can see that your closeness as a family keeps you going and you all encourage each other, which is wonderful because without that I think it would be well nigh impossible. Here’s hoping that there are two steps forward and no steps back very soon. I hope we get plenty of sunny days in spring that can boost her energy and allow her to get out and about a bit more.

  13. Hugs for Dafter. Thank you for the update. I am thankful she has a little independence with caring for her personal needs and hope she gets healing soon.

  14. The Dafter is a STAR as far as I am concerned. Having had the privelege of meeting her she is a beautiful young woman and I am sure that things will improve health wise. With the wonderful family she has….. Having said all that I just cried bucket loads first. Love to you all. (not forgetting Tilly.)

  15. This is such a touching post and the true definition of love and devotion, faith and perseverance. Your family is very courageous and strong, especially, of course, your dear daughter. I do hope that she feels all of our love and compassion for her and how very much we are all praying for her recovery. xo Karen

  16. I have very mixed feelings reading this post. I find it incredibly sad mostly, and feel like crying. On the other hand, the Dafter’s times of hopefulness that we can see in this and other photos, and your love and devotion are just unbelievable. “Where does this hope come from?”, I ask myself. “What have their experiences been that give them such an outlook?” I guess the answers don’t matter to you….you are in a situation that you’re dealing with as best you can. But to me as an observer I find myself almost distanced by the discrepancy between the world you describe and the world that I find. I don’t meet people like you in my daily life, and I’m poorer as a result.

    • oldblack, I happen to know from your blog that you have met your own heavy family responsibilities with love and devotion! It shouldn’t be unbelievable to you of all people. And what a good question – where does the hope come from? Partly I think it’s part of my / her / Michael’s natures. I think of the children in Nazi concentration camps who drew butterflies on the walls of their prison – the symbol of life, even in that unthinkable evil. And partly I think it’s a conscious choice. It’s nice to have something we have a choice about, even if it’s just our reaction to the circumstances. I don’t know what to say about your very kind comment re. not meeting “people like me”. (You mean life in Australia isn’t as cosy as on Neighbours?!) Sometimes life is bleak, in terms of personal relationships, isn’t it? And then sometimes people surprise us by revealing unsuspected kindness. I wish you lots of kindness in your daily life, oldblack. You deserve it.

  17. This is a very touching account of your family life and the situation you all find yourselves in. I suspect there is no simple answer to Dafters condition and you all seem to be doing what is best for all of you at the time. I wish you all well in your battle to conquer this and hope that in time the little progresses of now become bigger and for longer. I’m not sure if you’ve tried it already but I wonder if something repetative like making bead bracelets/necklaces might be enjoyable for her? It might feed the creative part of her and the repatition shouldn’t tax her too much. Just a thought. You are all doing so well already in what is a difficult ongoing situation. It will pass, and you will all be the stronger for it, of that I’m sure. xx

    • Thanks for the suggestion! She does sometimes enjoy knitting. Once she’s able to sit up a bit better, maybe I can bring a tray of beads for her to work with in bed.

  18. Thanks for the update, though it made me cry! I am so impressed with the fortitude your daughter must have to maintain good spirits in the face of this devastating illness. She encourages me.

    We continue to pray for her complete recovery.

  19. Dear blog-friends,
    Thank you all so much for your warm and encouraging comments (though I wasn’t meaning to make anyone cry!). I read them all out to the Dafter. She was a bit crushed after a visit to the pediatrician, who said there is nothing more they can do for her now except “monitor” the situation and hope she improves. Your messages really lifted her spirits – especially to know that people out there are sending so many good thoughts and prayers her way.

    Thank you all, from all of us.

  20. Good morning. Yesterday I read your post about your daughter and it made me sad to think of you both but at the same time happy that you both have such a positive attitude and are able to take one day at a time and make the best of it. This morning I thought I need to share an idea with you that might be available for you. Do you know about Overdrive? Overdrive is a free APP that she can download on to her IPad giving her access to the public library. You put your library card number into it and you can download both books you read and Audiobooks for free from your own library. It appears that libraries all over the world use this service and it’s totally amazing to use. It’s so convenient to use and you can even reserve a book that is not immediately available because someone else is reading it. You are notified by email when it becomes available and you have 96 hours to download it.

    Aside from this I so enjoy reading about life in Scotland and often think of my great grandmother who immigrated from Dundee to NYC in the 1850ies at age 15 by herself!

    • Hello Ann,
      Thanks for the tip about Overdrive. Our local library has a good selection of audiobooks, but sadly she finds listening to things read aloud takes even more concentration than watching a tv show, so that will be something for when she’s better.
      I’m glad you’re enjoying the blog. Your great-grandmother must have been a very hardy lass!

  21. I wish I could articulate my response to reading this post, but I’m struggling to find the words.

    ‘Hope’ is the word that most comes to mind. Your family show me hope by your ability to find and make light together in even the darkest of situations. And I have hope that, with and through and because of that fact, the Dafter’s situation will improve. She seems like such a creative, compassionate and determined young woman (which is no surprise with such devoted parents) and I truly pray that she’s able to fully enjoy life in all its abundance very soon.

    I think often of a friend of mine when I read about your daughter. She, too, found her life taken over by ME/CFS when she was probably not much older than the Dafter is now. When I first met her, though, she was in a far healthier place (though relapses have happened), in the middle of completing her second university degree and these days she’s busy setting up her own youth work charity! She, too, brings to mind the word ‘hope’ for me.

    Thank you for sharing some of your story with us. Know that your family are surrounded by love and prayers from all across the world!
    God bless you.

    • Dear Laura,
      Thank you for your prayers, I really appreciate them. I think keeping hope alive is one of the most important things we can do at our house. And there is no reason not to hope (though sometimes the evidence seems to point to another conclusion), because no-one can know what the future brings, especially with an illness like this. It’s always very heartening to hear stories of people recovering. Thanks again.

  22. Thank you for your update, Christine. I’m sorry to hear about the two-steps back, but overall the Dafter has a strong spirit and determination, and progress is and will continue to be made. There are many people praying for her and your family for healing, strength and uplifted spirits. Keeping you all in prayer,
    Love,
    Anne♥

    • Thank you very, very much Anne. You’re right about her strong spirit and determination! Good wishes coming to your family from us too.

  23. I’ve just read in the Guardian that the UK Shadow Home Secretary, Yvette Cooper spent a year in her early twenties battling ME. She was at home a lot: (p.19) ‘The things I’d taken for granted, like being able to cross a road quickly, disappeared…I was completely up to date with all the soaps.’ Please send the Dafter my best wishes. Sandra

    • Thank you Sandra, from us and from the Dafter. It’s amazing the number of people who have been affected by ME at an earlier point in their lives, and gone on to do loads of things.

  24. Just wanted to say thank you for sharing your family situation with us…I myself was very severely affected but am now just back from a week’s holiday to France…so please, please, please give your daughter a hug from me and tell her to cling on to hope…she can recover…,many sufferers do…best wishes Catherine xxx

    • Thank you very much, Catherine – I’m so happy you’ve made a recovery and I will pass your good wishes on. We don’t allow ourselves to consider the possibility of her not getting better!

  25. A heartfelt and honest post, Christine. Thank you for the update. I have to agree with you that the Dafter will recover from this. I recently was inspired by another blogger’s post on the patience it takes to be a seed – sometime they wait years to germinate. The Dafter will heal and flower in time – I believe this. ❤

  26. ME is such a terrible thing at any age but I can’t imagine having to deal with it so young. It can be so dispiriting when progress is so slow but it sounds like you’re doing everything right. Well done Dafter for persevering and for finding ways to stay positive no matter how tough it gets. I really hope your progress continues.


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