Posted by: christinelaennec | February 19, 2017

Five and a half years of ME/CFS: Dafter update

Hello!  No, I haven’t slipped off the edge of the earth.  Time has flown since New Year, what with various bugs afflicting us, supporting the Dafter to keep going at college, Michael being absolutely snowed under with work, me continuing to get our US ex-pat tax paperwork sorted, my volunteer work as church music librarian, and singing in choirs.  In addition, since Christmas I have been serving on an advisory board for a potential study into M.E.  I have spent every spare minute studying material, and being in touch with some very talented people who are as passionate as I am about finding out what this mysterious illness is, and how to cure it if possible.

February 2017

February 2017: flowers for our 29th wedding anniversary!

Another recent event is that the Dafter turned 19.  This was a very hard birthday for her.  Five years ago almost to this day, we sat in a paediatrician’s office.  She said that since the Dafter had been ill for six months, unless blood tests revealed another cause, she would diagnose M.E.  She said, “Every year I see two or three cases, mostly girls.  It’s usually 4 to 5 years to full recovery.”

I remember waiting with the Dafter for Michael to bring the car around, wondering if she would manage to walk across to it.  We were both stunned.  “You mean I’m going to feel this bad til I’m 19?!” the Dafter said.  “No, no,” I reassured.  “You’ll feel a lot better by the time you’re 19.”  But we couldn’t have known how much worse she would become; we couldn’t have imagined the two and a half years of lying nearly-paralysed in bed; the isolation and loneliness; the painfully slow and part-time return to education and life.

The Dafter with her final piece for her Higher Art portfolio. This is part of a study of rainbow colours on her face. Done in pencil and paint.

January 2017. The Dafter with her final Expressive piece for her Higher Art portfolio. This is part of a study of rainbow colours on her face. Done in pencil and paint.

Now at 19 the Dafter is better than that day five years ago, but she is far from being well.  So she has gone through quite a grieving process, with me by her side.  We have to accept that she will never have been well during her teenage years.  However, she is making progress, and I still believe she will make a full recovery.

It is also a blessing that the Dafter isn't wheelchair-bound, because she could come into the strands of hanging lights with other people. Such fun!

At the Enchanted Forest, October 2016.

The pattern of the days and of the week

The Dafter goes to college [for US readers, a bit like a community college] three days a week.  She’s now able to attend for three and a half hours, sometimes four hours.  Although she misses at least two hours of class time every day, she has managed to keep up with the course.  And sometimes she has a bit of energy left over to do something else during the day other than rest in bed.  She still needs rest days where she does very little besides rest in bed.  But this is only about once a week, sometimes even less.  Days when she doesn’t have college, we have other routines that involve getting out of the house every day that it’s possible.

She still is too unwell to take public transport on a regular basis.  I (or Michael) take her places in the car, to save her energy for whatever she is going to do.  Occasionally now she can take a taxi.  However, having to leave at a fixed time is very stressful because she still can’t quite be sure how long it will take for her to be ready.  She can’t rely on her body functioning a particular way from day to day.  So a big part of my job as her carer is to be available to leave when she is ready, and to go get her at a moment’s notice.  But providing her with this support is allowing her to heal.  She will eventually be able to be more independent.

Last winter she discovered that she could delay the plummeting of her energy if she closed her eyes and deeply rested in the car while I drove.  She hadn’t been able to rest deeply in this way before discovering that the motion of the car made it possible. We went for “rest drives” nearly every afternoon, and they were a big help.  But this winter she has not needed rest drives nearly so often.  She seems to be able, most of the time, to recover a bit of energy by doing something restful in bed.  Sometimes we still go for a drive, but she can now rest while enjoying the view and maybe taking photos.  A year ago that level of activity might have drained her.

The Dafter in Gourock, January 2017.

The Dafter in Gourock, January 2017.

Physical strength

The Dafter is now able to walk a bit further than just from the car to her class at college and back.  She is sometimes able to walk ten minutes each way with her classmates to a nearby supermarket at lunchtime.  And when we get home from college, it’s no longer a struggle to get her from the car, up the stairs and into her bed.  Sometimes after college she comes into the kitchen to get her own snack before going upstairs.

She still needs the wheelchair sometimes, for example to go on a shopping trip, or to travel.  We think of the wheelchair as our friend, because it makes so much possible that wouldn’t otherwise be possible.  It’s a bit like a blender:  you may not use it every day, but when you need it, nothing else will do.

A recent development is that she sometimes feels the need to stretch her muscles, and go for a short walk.  She is still in pain almost all the time.  But sometimes now the pain comes from not having moved, rather than just the constant M.E. pain.  We still give her regular massages and foot massages – a foot massage can help her get to the shower in the evening, for example.

Collapses are changing

For years the Dafter has had what we call “collapses”:  sudden and total loss of power in her body, inability to speak, great pain, but complete awareness.  A few years ago I counted that she’d had 80 collapses in six months (about every other day), each lasting half an hour to 45 minutes.  Over this past winter, the collapses have become much less frequent and have changed in nature.  She can feel them coming on, and we’ve discovered that if we vigorously massage her straight away, she doesn’t lose power completely.  We can head them off in this way.  She still is in great pain, but it passes fairly quickly.  And this only happens a few times a month, almost always when she is particularly tired out.

Mornings

Waking and getting up remain something she needs help with.  She needs nine to ten hours of sleep a night, and even then needs a friendly pestering presence to fully waken and manage to get up and out of bed.  However, whereas two years ago she could not do anything out of the house before 1 pm, now she is almost always able to leave by mid-morning.  On weekends she sometimes wakes naturally, which is a new development and a lovely one.

Bedtime

Getting to bed at the end of the day remains an anxious time for her.  While she is fairly happy to rest in bed during the day – we have a system of duvets and pillows that prop her up at the non-sleeping end of her bed – the thought of going to sleep for the night is still a bit frightening.  I think this is because when she was very ill, she was often afraid that she was going to die before the morning.  I help her at bedtime, and although it can take quite some time, she manages to be calm and ready to sleep.

Immunity

The Dafter has successfully fought off three different “just a viruses” over the past two and a half months: a tummy bug, a bad cold, and a bug involving asthma-like wheezing and requiring an inhaler.  She and I have spent a few long nights recently.  However, she has managed to keep going to a greater extent than in previous winters, and her immunity seems to be a bit stronger.

"Suffer the little children to come unto me". 1950s stained glass church window.

“Suffer little children to come unto me”. 1950s stained glass church window.

Concentration:  progress

The fact that she is able to focus for three and a half hours at college is an advance on last year, when she managed an hour and 40 minutes of concentration at a time.  She has had a number of assessments this academic year, and her memory has been serving her well.  She’s passed all her assessments so far.  Just the fact of doing so many has been a big accomplishment, seeing as in the previous five years she had only taken a few short tests, one prelim exam and one full exam.

For most of the past five and a half years of illness, she’s been unable to read extended texts, or to listen to audiobooks.  In June 2015, she discovered she could watch films again – that was a big step.  But text remained too challenging.  (This is why she has never yet been able to study English at high school level.)  However, over the Christmas break, I tried yet again to read aloud to her.  And this time, she was able to follow!  I’ve read one book (Madeleine L’Engle’s A Wrinkle in Time, which she enjoyed) and we have started another.  As long as she can paint while I read, she can focus and follow the story.  This is a major development.

Social life

It is still the case that very few of the Dafter’s friends have an understanding of the reality of her illness.  This is partly because they don’t see her when she is resting and unwell (which is much of her time), and partly because when she is well enough to socialise, she is so thrilled to be with other people that she seems very well and energetic.  It is hard enough to grow up and work out who you want to be friends with, when you have full health.  The Dafter has had many fewer opportunities than most her age to make friends and be with people in the past five and a half years.  However, she now has quite a few friends of various ages and interests.

Having a day with no particular plan is no longer a major worry to me.  Often now, the Dafter can find someone to do something with, if she feels like it.  She was able to go out to celebrate her birthday, and she had an absolutely wonderful time dancing at a club.  Needless to say, she spent two days in bed afterwards, but it gave her a happiness that no amount of careful pacing could ever give.

Emotional progress

The past few weeks have been challenging not only because she turned 19 – when according to the paediatrician, she should have been fully well – but because her college work has included learning to write and speak in Gaelic about “how to be healthy”.  The Dafter can no longer remember what it feels like to be well.  With my help, she managed to write an essay in Gaelic about her health, why she cannot go to the gym or the swimming pool, why her food sensitivities mean that she can rarely eat at a restaurant.  One of the prompts was, “What do you do when you need to lose weight?”  Her answer was, “When I need to lose weight, I look in the mirror and decide that I am beautiful just the way I am.”  The effort of speaking and writing about the full reality of her illness took a lot out of the Dafter, and it took me a great deal of work (not for the first time this academic year) to support her and encourage her not to drop the course.

However, she persevered.  The tutor was supportive – she doesn’t set the syllabus, and this topic may be on the exam in May.  She told the Dafter that most 19-year-olds would have much less to say about their health.  In the speaking assessment, she asked the Dafter how long she’d been ill, and was sincerely interested and probably impressed with what the Dafter has come through.

The Dafter still loves her rats very much, although she is not always well enough to take them out of their cage for long (Michael and I do that, with the help of their wee sling).  She has had some tender times with Tilly, who is still with us.  Pets are such an important emotional support.

Tilly, February 19, 2017. She has several tumours down her tummy, eats more, and walks a bit more slowly, but seems very happy and very purry with us.

Tilly, February 19, 2017. She has several tumours down her tummy, eats more, and walks a bit more slowly, but seems very happy and very purry with us.

Special moments

It sounds like nothing, but a few weeks ago while I was making her packed lunch, I nearly burst into tears of joy when the Dafter appeared in the kitchen, to ask me if I thought her outfit was okay.  It is such a normal thing for most people, but it was really amazing that she had got dressed by herself – this is increasingly the case nowadays – and had the energy to come all the way downstairs, and get back upstairs, with the idea of potentially changing her clothes after that. (The outfit was fine.)

Kelvingrove Museum, Glasgow. February 2017.

Kelvingrove Museum, Glasgow. February 2017.

A few days ago, I picked her up from college after she had had her speaking assessment (on the topic of health).  The Dafter was tired, but relieved and pleased that it was behind her and she’d managed it.  I asked if she wanted to do something before going home.  She asked if we could go to Kelvingrove Museum – and we did!  She remarked:  “This is the first time I’ve been here on foot,” meaning without using the wheelchair.  She really enjoyed seeing the (stuffed) animals and displays about dinosaurs. Michael, most unusually, was able to join us as well.  We had a snack all together, and got into a conversation about palindromes.  The Dafter found some funny palindromic sentences on her phone, and was reading them out to us.

I was so very, very happy.  To anyone else we looked like just a normal family, I suppose.  But the fact that she had managed a difficult assessment that morning, AND walked around the museum for over half an hour under her own steam, AND that she could sit there giggling with us about sentences such as “Red roses run no risk, sir, on nurses order” – it struck me as really amazing and wonderful.

I want to thank the many regular readers who have followed our journey thus far, and left so many supportive and helpful comments here.  I have a little collection of them printed out, and some are engraved on my heart.  They are very precious to me.

If anyone is reading this because their child has been diagnosed with ME, I’m sorry that it can turn out to be a very long road. But never give up hope!  Try to find other people dealing with the condition.  (In the UK, the Association of Young People with ME can provide some help for those under 25 who have ME. – Edited on March 16 2017:  AYME is closing at the beginning of next month.  Action for ME will open a Children’s Services Team.) You will find that life can still have deep meaning and joy, and your child will no doubt develop great strength and empathy on the path to healing.

[Edited to add:  There is an informative video of a presentation by Mark Van Ness in 2014 showing that exercise can be harmful in the early stages of ME:  https://www.youtube.com/watch?v=q_cnva7zyKM&feature=youtu.be]

 

Advertisements

Responses

  1. Thank you for the update. I’m glad the Dafter is doing so well and send her belated birthday wishes. I hope the year just gets better and better for her.
    Love and prayers for you all,
    Barbara x

  2. So good to hear from you about all things going on with you and your family. I will continue to pray for you all.

  3. the latest nhs guidelines seem particularly appaling, CBT and graduated exercise programmes , not sure how they think this will work for everybody

  4. It has certainly been a long journey, with lots of ups and downs you are all in my prayers and sincerely hope your can see the light at the end of the tunnel and that full health will return soon.

  5. Go The Dafter!!!!

    Well done…all of you! xx

  6. Glad to see an update as I’d been checking back and concerned. I may have mentioned our niece’s daughter, ill for several years now and diagnosed with PANDAS. The pattern sounds similar to what the Dafter has endured.
    When our families continue in reasonable health I suspect we can’t imagine the great changes demanded by a devastating chronic illness.
    Each milestone/improvement which your daughter achieves is truly wonderful–and achieved with such courage
    How good that Tilly is still with you.

  7. So glad to read all the positives , you are all amazing. Most of all the Dafter. xxx

  8. It is very moving to read this overview. I was diagnosed with ME in 2014, after several months of inexplicable ill health: it’s been a struggle over the past 3 years, but I’ve been nowhere near as ill as your daughter. What a cruel disease it is, so often striking young and robbing children of their adolescence, yet still met so often with scepticism and ignorance. It’s wonderful that you are taking on a role to combat these attitudes. What shines through your account of struggle, grief, effort and great courage, is the strength of love. May Gos bless you and your family.

  9. A wonderfully well written and clearly expressed update, thank you, Christine. There’s no doubting the courage of the Dafter, and the patience and resilience all three of you have shown over the past few years. It’s inspiring to see the ways in which the Dafter has progressed, albeit far more slowly than she would have hoped, and that gives me hope that she is indeed on her way to a full recovery. I love her painting, she’s very gifted. It seems her art is one of the ways in which she’s been able to express herself during these difficult years, and perhaps the artist she is now is in part at least due to what she’s gone through. Not that I would wish such ill health on anyone, but it’s nice to see how good things can come out of bad. Lovely to see Tilly again, too. 🙂

  10. Thankyou very much for this update. I had thought I understood a bit about ME, but reading this I am horrified at how hard it has been, and that after five years The Dafter is still not nearly back to full health. It has made huge demands on you, her parents, too. I do so much admire how all of you have dealt with it. And I hope so much for a full recovery soon.

  11. Hello from Norway Christine. I am afraid I wasn’t able to read the whole post, but I understand that your girl has improved a great deal, although far from completely. I am so happy fpr you all that things have moved foreward and that the future is looking brighter. It warms my heart to hear how you all work together and the love and support that you share. I am afraid my mother and sister have written me off, as have all my friends but one. However, I have the most wonderful husband and children in my life. They are my sunshine!
    Dear Tilly. You are so right about pets meaning a great deal. My sweet dog and dear friend was diagnosed with cancer a couple of weeks ago, terribly hard. She is on palliative medication now and very happy. Although we know it won’t last, we are treasuring the time together.
    A howling wind here today, my son has a bad eye infection so we will be snuggling up indoors. My love to you all, blessings, Pam

  12. So pleased to read your update. I have followed your blog since you lived in Aberdeen, as someone who also used to live in Aberdeen. I’m very moved by the relationship you have with your daughter, the way you support her and the way you derive joy by being with her, even when there are hard times. My teenage daughter is struggling, in a different way, and when I’m finding it hard to help her (she doesn’t always want my help), I am inspired by your story, your ability to find the positive, and your great belief in your child. And I love your daughter’s artwork – she is so talented! There’s something very alive and energetic about those rainbow colours she’s used.

  13. Dear Christine, thank you for your update. Your ever-smiling photos of your beautiful daughter are so great. Love to hear that you had a wonderful family outing to Kelvingrove, which is a total favorite of mine. Nice to see your little Tilly. I think as I read your post, I realized as you and Michael have been an advocate for your daughter for years and she is now doing so well, the time has perhaps come where I believe you have the compassion and understanding of the reality that you will also be a great blessing to others.

  14. Dear All,
    Thank you so much for your kind comments and good wishes. Thank you also for your prayers. Personally I believe prayers can be very powerful. People say, “All we can do is pray” as if it were a feeble last recourse, but I think prayer can make a real difference.

    Tilly is doing well today – sunning herself and purring. Yes, it is great that she is still with us.

    Barbara – thank you! Who knows perhaps 2017 will be a banner year for the Dafter.

    Lucinda, Lorraine, Lynda and Jill – thank you all!

    Kaye – it really is incredible that the NHS guidelines are still based on the discredited PACE trial. Research is now demonstrating that Graded Exercise Therapy can do a lot of harm to people suffering from ME. The NHS in England is quite different in its approach to ME from here in Scotland. Interestingly, the Scottish Government ‘s Good Practice Statement on ME/CFS (2010) states that Graded Exercise Therapy is controversial and that many ME patients feel it makes them worse.

    Mimacat – Yes, I remember you commenting about your young relative with PANDAS. I hope she is also making progress. It sounds like she has a very loving family. It’s very true – living with chronic illness is like living in an alternative reality that few others can see or guess.

    Kate – It is a very frustrating illness, and as you say, so often met by disbelief and judgement. We have experienced that as well, and I still have to contend with anger rising in my throat when I think back to (for example) the hospital tutor telling the Dafter that she just wasn’t trying hard enough and was “too cosy at home”. That profoundly ignorant assessment did enormous damage, and the Dafter still occasionally wonders if she’s “just being a drama queen” and if she really is actually ill. I do believe that medical research will unlock the mystery. I just pray it happens sooner rather than later. And in all trials in life, love is the best way to proceed, as much as we can… I wish you a steady recovery and lots of happiness along the way.

    Lorna – as you say, good can come out of bad. (And yes, I do believe she has a great deal of artistic talent – as objective as I am about it!!) You know only too well the blessings of a supportive family, with the good care you give your parents. Ultimately, we are all in it together, really!

    Flora – thank you. People tend to think ME is no big deal, because it doesn’t kill you and “goes away eventually”. And of course there are quite a few mild cases, for which we can be thankful. But it can also be absolutely devastating, and sadly there are people who have been housebound and ill for decades. I had a little glimpse into what we were facing when I got the initial information pack from AYME, which included a leaflet on Tube Feeding… luckily the Dafter has not been that badly affected.

    Pam, your comment just broke my heart. It is so devastating when others in our lives can’t cope with what has happened to us. I have experienced that as well. I’m glad your husband and children are wonderful. As I said above, I’m sure ME will be understood, and at least if it can be “more real” in the minds of people who disbelieve it, that might be some help. I hope your son’s eye infection is now much better, and that you are continuing to find happiness in your creativity and your home. Take care and thanks for commenting.

    Ellie, I’m so sorry your daughter is also struggling. I’m sure even if she doesn’t want your help on a conscious level, she desperately needs you to be there for her, and appreciates your unconditional love. It’s really tough to realise that our children each have their own destiny. But at the same time I believe that just loving them (“just”) and believing in them is a very powerful help for them. I wish you both all the best, and thanks for your comment.

    SimplyScotia – If I can use my / our experiences to help others, then that will make me very pleased.

  15. Christine, I randomly found your blog when I looked up American candy stores in Aberdeen (you’d moved to Glasgow by then). I stayed for the knitting and places you visit, but I’ve ended up learning about ME, and the real life challenges of this condition and of full time care. Thank you for sharing all of this. This milestone has been tough for the Dafter, but it’s great to hear about all the things she’s been able to do and achieve lately.

  16. Lovely to read your update. I often think of you all. Much love.
    L.x.

  17. It’s so encouraging to read this careful report and see just how much progress has been made! I’m sure day to day it doesn’t appear to be so much but when you compare year to year it is so encouraging! Looking forward to, Lord-willing, many more good progress reports!!!

  18. Reading this carefully and well written report on your daughter progress with ME made me think (once again) how important it is for parents to be supportive and advocates for their children. Your contributions to the advisory board are invaluable to others and its wonderful that you are able to do this. Peace to you and to your entire family.

  19. Quelle longue et douloureuse histoire, Christine, mais si chargée aussi de courage et d’amour. J’espère de tout coeur que bientôt vous en verrez la fin. Tous mes voeux à toute votre famille.

  20. I’ve been watching for an update. You are the very kindest mother. The Daffer is blessed to have a caregiver that seeks to understand and cherishes her so much. You’re patient and love is patient.

  21. Christine, I have been following your blog for a long time and would like to send you my good wishes and prayers. I admire you all very much and have great admiration for the Dafter’s stoicism in the face of devastating chronic illness and for the light and creative talent that shines from her – and in you as well. I, too, have CFS though was not diagnosed through the NHS – my doctor denies its existence and told me I must keep exercising. It took many months to find a naturopath who told me what the problem was. But in my case it was the result of prolonged stress, both at work and during a string of close family bereavements and associated legal responsibilities. I hope with all my heart that your daughter will make a full recovery.

  22. Dear Sakthi, Lynn, Heather, Ann, Annie, PomPom, Gill –
    Thank you all very much for your encouragement and kind words. Yes, love has to be patient!

    Gill, there is now scientific evidence that exercising can be very harmful to ME patients, particularly in the early stages of the illness. I will put a link to Mark Van Ness’ talk at Bristol in 2014 in the body of my original post. Unfortunately the NHS guidelines (NICE guidelines) are still based on the faulty PACE trial. Many GPs have very little understanding of ME, and it is terrible that they can actually make their patients worse with the wrong advice.

  23. Christine, thank you for the update of your courageous Dafter! She has the prettiest smile! I’m sending love to you all. xxx

    • Thank you very much, Deborah. We need all the courage and strength we can get just now, so good wishes are much appreciated.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: