Posted by: christinelaennec | March 25, 2012

A Diagnosis

There is blue sky behind the clouds!

As regular readers will know, my darling Dafter* has been ill for seven months now.  After a horribly stressful first year of high school, which included being badly bullied and changing schools, she changed schools again at the end of August.  She attended for one day before falling horribly ill with throat, sinus and ear infections.  Two weeks later I posted about this turn of events, writing “Oh how we shall laugh someday,” but inside I had a Bad Feeling.  She had three courses of antibiotics, and tried to go back to school but kept having relapses.  The ears-nose-throat problems finally seemed to lift by the end of January, though she still had very sore glands and a deep fatigue.  On the 22nd of February we were finally able to see a pediatrician, who said she would test for a variety of things but that it looked a lot like ME, also known as Chronic Fatigue Syndrome.  As nothing else has shown up in the test results, and as her symptoms do correspond to those of ME, we now have a diagnosis.  (ME is a default diagnosis – there’s nothing you can actually test for.)

Our visit to the pediatrician was a sobering one, as she told us, “In some cases, it can lift after about a year, but in most cases it’s four to five years for a full recovery.”  The Dafter was understandably tearful afterwards:  “You mean I’m going to feel like this until I’m 19?”  However, by that evening she was reflecting that at least it wasn’t going to be for her whole life.  We saw children in the waiting room who will clearly never be out of their wheelchairs.  And we know that there are other families who are being given diagnoses that are heart-stoppingly bad.

As the test results have rolled in, all finding nothing, we’ve had time to come to some understanding of what may lie ahead – though no-one can know for sure how her healing will unfold.  There is no medication to take for ME, but physiotherapy, occupational therapy and Cognitive Behavioural Therapy can help.  We’ve joined two organisations:  Action for ME and AYME, the Association of Young People with ME.  The latter is for ME sufferers under 26, and their parents/carers.  We’re awaiting an appointment with the Community Pediatrician, who will act as the Dafter’s care manager.

What is the Dafter’s average day like?  She’s always been an early riser, and still gets up about 7:30 or so.  When she wakes up, she feels exhausted.  In her words, “I feel like I got two hours of sleep, and ran a marathon the day before.”  By the time she’s had breakfast and dressed, she needs to lie down for a rest.  After a while she may have enough energy to do art, or a puzzle, or read.  Often she’s not well enough even for these activities.  Whichever of us is looking after her will try to keep her somewhat occupied, or at least keep her company.  She likes having her feet massaged.  When she’s very poorly, watching familiar tv shows on DVD can be a way of passing the time.  New tv shows or films can take too much energy.  When she’s really exhausted, she gets her words mixed up and can’t remember how to spell.  Since she fell ill in August she has had dark rings under her eyes all the time – to a mother’s eyes, she just looks so unwell.  The Dafter is generally a positive person but has at times been hugely frustrated and low – as anyone would be.

After lunch, and another rest, we try to get out of the house, although that might only be to go out into the garden.  Some days we have more of an outing – recently we did ceramic painting, which took every last ounce of the Dafter’s energy.  She tries to walk but can’t go more than a few hundred yards without needing to stop and rest.  This is why we’re thinking of investing in a wheelchair, as I wrote about here.  In the late afternoon she’s allowed to go online, and that is her way of having some interaction with kids her age, because by then they are home from school and can sometimes chat.  In Real Life she has three friends in Aberdeen, though she only sees them about every six weeks or so.  (ME is known to be very isolating – I wish to point out that the Dafter isn’t an anti-social hermit!)  After tea, she generally perks up a bit and enjoys more online conversations until 7:30.  Then more time in her room – hooray for iPods we all say! – or she comes to chat with us Old Folks, and then gets ready for bed.  She’s usually in bed by 10:00 or so.

She and I agree that she’s at about 30% on this scale.  I was a bit startled to read, in the AYME parents’ pack, “if you need advice on tube feeding…”  Thank goodness she isn’t any worse, and I pray she never becomes any worse.  There are people of all ages who are paralysed with ME.  I’ve been in touch with one mother of a teenager with ME.  It was such a relief to speak to someone who knew all the things we’ve been going through.  Her daughter was housebound for two years and on crutches for two years.  In her fifth year of ME, she’s studying on a distance course.  She is definitely better, but not yet fully recovered.

I’ve had many discussions with the Dafter about “why me?” and “it isn’t fair”.  And this is the big question:  why is there suffering in the world?  It’s especially hard if, like me, you believe in a loving God.  I don’t have the answer but it seems to me that everyone experiences challenges and difficulties in this life, and while we can’t choose what happens to us, we can choose how we react.  That’s not to say that we can never react with grief and anger, even at God.  I’ve certainly shed tears and felt heartbreak over what’s happened.  But there are people worse off – people who have accidents that paralyse them, the daughter I know who is waiting for an organ transplant, the lovely man my age who found love late in life, was then struck down with cancer, and will be buried two days after what would have been his first wedding anniversary.  I have to agree with the Dafter that life sometimes is very unfair indeed.

She asked me the other day, “Couldn’t I just be put in a coma for a couple of years and wake up when the ME is a lot better?”  That’s exactly it – we are given a life to live, even in illness and grief.  We can’t duck out when the going gets rough.  And there are some compensations.  The Dafter may not be learning academic things at the moment, but she is learning a great deal about patience and fortitude, and about herself no doubt.

Back in November, my minister gave me two pieces of excellent advice.  “Don’t fix your mind on one particular outcome to all this,” he counselled, and “Enjoy her while she’s with you.”  This last is not difficult to do!  We’re determined to be realistic, practical and positive.  There are many questions yet to be answered about arrangements to care for the Dafter, our working arrangements long-term, and her schooling.  (It’s ironic that both our children – for completely different reasons – will have required input from various agencies.  But we need the help.)  Michael and I are determined to have as happy a family as we can.  I have to say that not a day goes by when we don’t have a laugh together.  It’s a great blessing that we all get along so well.  And even in her great fatigue, the Dafter is very funny and clever.  I think every day of my minister’s advice and I do hugely enjoy her company.

Despite what’s happened, I believe in the first line of this hymn by Kathryn Galloway:  “Oh the life of the world is a joy and a treasure”.  I’ll finish with what the Dafter told me as I left for work the other day:  “Appreciate your energy!”  No matter how much or how little you’ve got.  And lastly, a huge thank-you to all of you who have left such kind and encouraging comments, and to those who have kept us in your thoughts and prayers.  It really does make a difference.

—————-

*the Dafter’s blog-name comes from a charming moment when she was learning to read:  she had learned the word “laughter” and, pointing to the phrase “my daughter” that I’d written, said, “and I’m your Dafter!”  Very logical.

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Responses

  1. Sorry to read this but very glad you have a diagnosis. My mum has had ME for nearly 4 years and thought the worst before she was diagnosed. I don’t think older people ‘get’ ME as badly as younger people but a lot of what you have written about the Dafter’s symptoms sound very familiar. My mum is much more active than she was back in 2008 but still not at the level she was used to, it is great to see her doing so much better though. Best wishes to you all.

  2. Hi, am glad you’ve reached a diagnosis, even if highly controversial, at least here in Norway. A good friend of mine has had ME for 4-5 years, but is now so much better. She had a baby, and has been well since, and even before she got pregnant. She’s taken medicines, but I don’t know which ones, but it helped her a lot. She’s also on a strict diet (have you tried that?) with no wheat (flour), no sugar, not much carbohydrates like potatoes, pasta etc. And that’s helped her too. I can’t even tell you how great it feels to see her recovered, so hang in there.

  3. Sometimes just knowing what the problem is helps. I think your faith and closeness as a family will get you through. It’s true what you say, life isn’t fair, but I truly believe God is there through the hard times and won’t let you down.

  4. Hoping and praying for a full recovery for your daughter. I’ve had fibromyalgia for 5 years now, so my heart goes out to her. Stay positive, God is working. Hugs, xx

  5. Christine, it was a bit bittersweet reading your post here. it was good to hear that you finally have a diagnosis but i feel for your poor daughter, having to struggle with that amount of fatigue at her age. praying for her and for yourselves for lots of wisdom and patience. hugs.

  6. The quest for a diagnosis can be exhausting. Now you know what the dafter is battling, you at least have a condition to focus on. Very best wishes, as ever.

  7. That’s a lot to deal with for someone so young, but what you say about her learning patience and getting to know herself is very encouraging. Hopefully in the future she’ll be able to look back on this time and see the good things that came out of it. Does anyone know what causes ME, and why some people get it?

    It was so lovely what you wrote about enjoying having her with you. Having a loving family who support and care for each other can get people through the very worst of circumstances and, as you say, it’s always good to remember that there’s someone worse off than you are yourself.

  8. I’m glad you have some idea now about what you have to deal with, even although it is, as you say, a default diagnosis. And also, as you say, it could be worse. ( I came home from church today really distressed about someone’s child and someone else’s baby grandchild with just catastrophic health problems, so I really understand the point about awful things happening to people.) I’m not surprised that it’s very hard for the Dafter to deal with the idea that when she should be active and enjoying what teenage years have to offer, she has to endure fatigue and the tedium that goes with it. The account you give of her day was horribly familiar to me because I did once have a spell of being very unwell which doctors couldn’t find a diagnosis for, and I was extremely fortunate that it only lasted about six months, but I remember well how wretched it felt. It sounds as if you are doing the best possible things, as parents, to help her through this miserable thing that has happened to her, And thank goodness for the internet and IPods. I hope you will get the support you need now from professionals and from parents of other young .CFS sufferers,

  9. Oh Christine – I am sorry for you all. She issuch a wonderful girl and I can just imagine her saying that to you. I can imagine how angry, frustrated and desperately worried you will be, but maybe it will bring some unexpected gifts with it. I hope and pray that she will recover quickly, and that you get as much help and support as possible. xxx

  10. You are all so inspiring to me. Hugs to the Dafter and I look forward to seeing you soon. Much love to you all xxxx

  11. Whatever the diagnosis or label, this situation seems so sad to me. To be robbed of energy at a time of life when people are normally at their most energetic is a cruel condition. But on the other hand, no one has a perfect life and others use their youthful energy in ways they later regret.

    It sounds like being in touch with more people whose children have similar conditions is going to be useful for you in coming to terms with your own emotions, give you more of an idea of future directions, and provide a source of advice and empathic listeners. I certainly hope that turns out to be the case.

    You seem to be one of the most positive people I know….that must help the Dafter (and Michael) enormously.

  12. I sometimes wonder if Elizabeth Barrett Browning had CFS – back in the 19th century. I believe she lay on a couch for years, and wrote poetry, and then eventually eloped to Italy with Robert Browning.

  13. That’s a pretty serious diagnosis to face. I think it must be hard because its not a “serious” life-threatening illness that you can throw your energy into aggressively fighting, Instead the challenge is going to be having the patience to wait it out and the fortitude to deal with the loss of energy. My thoughts are with you and your laughing daughter.

  14. Christine, so sorry to hear about this. Good that there is a dianosis now and I hope she fully recovers, with everyday a step on the good way.

  15. Thinking of you and here for you always. Thank you so so much for all your support during these past dark days xx

  16. This is just a thought, and it may not appeal at all, but I thought it was worth mentioning. From this time of year for the next few months one can watch live webcams of wild birds via the internet. My favourite is the one that shows the ospreys at Loch Garten, where the female has already arrived back, presumably from somewhere in Africa, and is now there tidying the nest and presumably waiting for her partner to arrive. I find it amazing that they migrate separately, so she has no idea of when he will arrive, or even of where he’s been. It occurred to me, remembering how hard it is to pass the time when one is too exhausted to do anything, that the Dafter might perhaps find it interesting to look at the nest on the website. Sometimes nothing is happening, and the birds are away catching fish, but particularly at the point when there are (hopefully) chicks in the nest, it can be very entertaining, and it doesn’t demand a lot of energy to just watch. You can find it through Google by putting in rspb loch garten, or alternatively you can get to the Carnyx website for Wild Birds at
    I hope you still have good weather and that the Dafter has been able to be in the sun for a bit today.

  17. I have taken a while to comment on this post as I am lost for words.
    What I do see is that you are all fighting and being as positive as is possible. I trust and hope that the Dafter is one of the speedier recoverers. I for one admire her art work and hope she always has the energy to carry that on.

  18. I’m not sure why the address for the Carnyx website didn’t appear – these things are a great mystery to me. I’ll try without the arrow things. It’s extremely simple – http://www.carnyx.tv

  19. Oh, C. I am so sorry to hear that the current trials will continue for a time. I am very sorry. Please know that I am praying and believing for complete healing for your sweet girl. I will also be praying for strength for you guys. Sending you love and prayers.

  20. My heart goes out to you and your sweet daughter. Having a diagnosis at least gives you a direction and it looks like you are taking all the positive steps to make life happy and easier for her. It is a hopeful sign that there is an eventual recovery and having your daughter close to you during this time in her life might someday be looked back upon as a precious time. You were chosen to be this child’s special Mother for a reason, and you are doing exactly what you are supposed to…..unconditional love and support. I believe God in his wisdom chose you for this special purpose. Your positive spirit and willingness to search for every avenue of help is your special gift to your sweet daughter. My prayers go out to you and your family at this difficult time. xx

  21. Dear everyone,

    I can’t thank you enough for your supportive and loving comments, and for your prayers. It means so much to us all. I do believe God is giving us strength, and I hope some wisdom as well.

    Katherine and Mali – it’s always good to hear recovery stories, thank you! Mali, there are also doctors here who ‘don’t believe’ in the existence of ME. And it’s true that little is known about it, because so little research has been done.

    Tina, my granny had fibromyalgia and I was very worried it might be what the Dafter has, but it seems not, and I am grateful for that – as you’ll appreciate.

    Lorna – no-one knows for sure what causes ME, but there are theories that it is set off by extreme stress (physical, mental, emotional). That would correspond to the Dafter’s situation. It must often follow on from severe infections, as a work colleague who is now recovered from ME said to me early on, “Be careful not to rush her recovery or she could get ME”.

    Barefoot Crofter – yes, I believe that problems and challenges bring us gifts as well.

    oldblack – as you say, some people use their youthful energy unwisely. At least I won’t have to worry about the Dafter being a party animal just at the moment (unless she becomes extremely adept with the wheelchair!).

    Flora – thanks very much for the bird-watching websites. We will give that a try!

    Jill – I think the Dafter will carry on doing art at every opportunity. Her talent and interest in art is a great blessing.

    Karen – I recently read (in my book of Amish proverbs) that the Amish look upon illness as an opportunity for people to show God’s love to others when caring for them. It’s an interesting perspective.

  22. I’m glad that, at last, the physicians have settled on a diagnosis – default or not. With knowledge comes a bit of empowerment. I was diagnosed in the mid-90’s with fibromyalgia by both an endocrinologist and a rhematologist. It helped to learn there was a reason for the way I felt. I’m currently in the midst of a “flare” and so totally and completely understand the way your precious daughter feels. It is truly no fun. There are days I feel “good” and I love those days. I’m due to fly in two weeks to see my older son and his family in Louisville…I haven’t seen them in almost a year! I just pray this flare is over this by then. A condition that you must “manage” affects everything about your life. Such is ME or Chronic Fatigue Syndrome.

    Your “dafter” has a wonderful attitude which will help a great deal. The especially hard part is that she is so young and must, at times, feel she is “missing” so much. I remember that you mentioned something about “chatting” online with friends in the afternoon. Does she SKYPE with them? That way, she could be “seeing” them and maybe feel a little more involved or have friends over on a day she feels well.

    I will be keeping all of you in prayers…

    • Dear Dianne,

      A belated reply to say thanks so much. Sorry to hear about your fibromyalgia. My Granny suffered with it, and so I have some idea of how pervasively it affects one’s life. I was worried the Dafter might have it, but it would seem not. Yes, chronic illnesses do take you into a new territory and you can never completely forget about them, but I agree that the best thing to do is focus on the positive and be grateful for what we are able to do.

      Yes, Skype is a great thing and does help with the isolation!

      Praying that your current ‘flare’ will have subsided before your trip. x

  23. Dear Christine, so much has been said already of what I would say to you that I won’t repeat it but just say that we are all thinking of you as a family and rooting for you.

    • Thanks, Linda, that means a great deal to me. We’ll get through!

  24. This is such an encouraging post. The Dafter and you really call me out of my own tendency to complain. She is so right to point out that energy is something to enjoy and appreciate. Hard work — for those of us well enough to do it — is a blessing. Sometimes life is just about simply being.

    We will continue to pray for you as you navigate throuugh this. I’m glad you have some answers.

    • Dear Kelly,

      Thanks for your prayers. What you say about sometimes ‘life is just about simply being’ is so very true. I was recently reminded by an article on the Guideposts website that the Lord’s Prayer bids us to ask for our “daily” bread – not weekly or monthly! One day at a time.

  25. I’ve thought about you all, Christine, several times since first reading this post. It must be a huge relief to know what’s going on. And what great news that—eventually—this condition lifts. I wish we were closer and able to offer more concrete support as you make your one-day-at-a-time (so smart!) journey. But please know you are in our thoughts. And please send our best to your sweet girl.

  26. As a child I had a friend who suffered with ME too, I know a little of how debilitating it can be.
    I’m glad that you have a diagnosis as it is something tangible to work with. I hope that your beautiful daughter regains her strength and health as soon as possible. Until then you are both blessed to have such a close and loving bond.

  27. Oh Christine, I’m so sorry to hear about the Dafter’s ordeal. A diagnosis is a starting point to finding the right treatment, it must be a relief to you that you actually got to this point. I hope she’s already on her path to recovery or at least at a place of balance. You are an amazing family, a living example of love. So very inspiring.

  28. Dear Cathy, Suzy and Luciana,

    (Sorry for a very belated reply, C and S!) Thank you so much for your loving thoughts. They do really support us all. It is good to have a diagnosis, and to know she will get better, even if it will take longer than any of us would have wanted. Yes, we are blessed to be a close family and we try not to take that for granted. Thank you again for your lovely comments. All my best to your families!


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