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.
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
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.
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.]