This is a rather depressing post, so if you are already feeling overwhelmed by winter darkness, holiday pressures and whatever else, then do check back in a few days for posts in a happier vein and we can all enjoy preparing for the coming of the light again together. The Dafter is doing okay, and she is going to be fine.
However, if you’d really like to know what it’s been like for my daughter (the Dafter) to experience severe M.E., or if you’ve never visited this blog before but are doing so because someone you know and love has M.E., then perhaps this will interest you. I’m very aware that each person’s experience of M.E. is unique, so that’s why I’ve written “at our house”. I’m also aware that other people’s children and loved ones are experiencing worse things, and will be reading this thinking, “Aren’t you lucky!”
The background is that in August 2011 the Dafter, then 13, caught a cold. She began at a new school and after her first day came down with throat, sinus and ear infections. These lasted about four months, and she was treated with three different courses of antibiotics. She went down a year in January, but as we tried to get her gradually back into school she became worse. At the end of February 2012 she was diagnosed with ME/CFS, and she was no longer able to attend school at all. The paediatrician told us that in teenagers it usually takes 4 to 5 years for a full recovery. She’s now been mostly housebound for 15 months, and I’m sorry to report that since the spring she has become worse rather than better. We hired a helper in the autumn of 2011, but since the end of last year we have arranged our work so that either Michael or myself are home with her. We purchased a wheelchair at Easter, and that has been an enormous blessing for all of us.
Physically, the exhaustion and fatigue are her constant companions, and she has learned to be extremely careful of the very small amount of energy that she has. Every morning when she wakes up she feels tired. She tries to come downstairs for breakfast, and go back up to get dressed before coming back downstairs for the day, but we’ve learned from experience that some days the two trips up and down the stairs first thing will be too much, so we bring her breakfast in bed. Her minimum goal for every day is to get dressed and spend the day downstairs. Very often getting up, breakfasted and dressed will take from 8 a.m. until 10:30 or 11 a.m.
Once she’s downstairs she tries to occupy herself, with our help. At any point during the day she may have a collapse and find she is too tired to move or to speak. For this reason if we’re not with her, we call to check on her that she’s okay. She has a bell in her room, but sometimes can’t reach it. A bad collapse will mean that we have to try to make her comfortable where she is – prop her head up with pillows, prop her feet up with furniture if her legs are hanging off the edge of the bed for example, or cover her with a blanket if she’s collapsed on the floor. A bad collapse can take about two hours for her to recover from, but often recently it’s taken her under an hour to be able to move herself and to regain the power of speech. We stay nearby, massage her feet, keep her company and just wait it out with her. I get a lot of knitting done at these times.
A few times a week she’s able to go out. This involves going down the stairs down to the front door (we live in a two-storied flat that’s above another flat), a rather long path to the gate, and either getting into the car or sometimes a short walk down to the end of the street. I’ve become very adept at parking in the shopping centres (something I never did before!) and at assembling the wheelchair and pushing her. Very often if we do manage to go into town, she will become exhausted after visiting one shop and we come straight home. Sometimes I just take her for a drive. And sometimes we go out to an appointment.
The two things that we’ve found are helpful are therapeutic massage every two weeks (I also massage her spine every day, and we give her lots of foot massages) and seeing a counsellor who is very understanding of ME. There have been many other appointments that have not been so helpful, namely trying to go for Cognitive Behavioural Therapy, which we stopped as it was doing more harm than good. “Studies have shown” that CBT helps ME, but we know from the Association of Young People with ME, and also from the Scottish Government guidelines on ME, that it does not necessarily work for everyone. Other things that we have found helpful are vitamins, especially B vitamins and Vit D, Siberian Ginseng drops, and 5-HTP, which is a serotonin tonic. She hardly ever has any sugar and eats a very low-fat diet in order to keep her weight down.
After tea she begins to get ready for bed. This process also takes a few hours. The stairs by this point in the day “are like Mount Everest to me”. We have been caught out on a few occasions when she hasn’t had enough energy to get up the stairs. It can take between half and hour and an hour for her to get up the stairs on these occasions. One of us sits just below where she’s slumped, to keep her from tumbling down, and one of us sits above and encourages. It’s not fun. Sometimes when she senses that she might not make it up the stairs she goes upstairs earlier, and has to spend more time than she’d like in her bedroom, in which case we keep her company.
Mental and Cognitive Effects
The mental impact of ME on the Dafter has been far worse than the physical (although clearly the two are related). You read about “brain fog” but the poor Dafter suffers from terrible cognitive impairment with this illness. If I didn’t know that when well she has absolutely no problems processing information, I would think that she has dyslexia and/or dyspraxia. She gets very muddled up in her thinking, especially where words and ideas are concerned. For example a few days ago, she said, “I’m cold. Not, that’s not it. I’m bored. No, that’s not it either. No – I’m tired, that’s what it is.” And that conversation took place at the start of the day! She has terrible difficulties following a thought through, and we have learned to be very careful never to interrupt her because the tiniest thing can cause her completely to lose track of what she was talking about.
Formerly a precocious and voracious reader, she now finds reading a near-impossibility, as the words swim in front of her and she gets to the end of a paragraph and can’t remember what she’s just read or what’s going on. She can read very small bits of language such as Tweets, and these keep her from going completely mad with boredom. She’s also a blogger. She runs an inspirational blog on Tumblr and runs a fan account (for Tommy Knight) on Instagram. She likes keeping these up because it’s a form of contact with other people, and it’s something regular for her to do. It’s nice when she gets messages from her followers!
She finds watching anything new on television very difficult. For example, she really likes the show Young Dracula on CBBC. It recently began airing its fourth season. She knew the characters, the main plot and at Easter we also visited Croxteth Hall in Liverpool where it’s filmed. And yet she has had tremendous difficulty following this half-hour show. She said, “I watch it and try to concentrate but it’s like remembering some film that I watched 6 years ago and didn’t understand very well at the time”. I remember her saying, “Vlad’s going to get married? People on Twitter are saying Vlad’s going to get married but that totally passed me by!” Watching a full-length film has been an impossibility for a long time now. However, she and I do watch Neighbours on a regular basis, and I never thought I would find myself congratulating my child on being able to follow a soap opera! Because the story lines are recapped, and follow on from one episode to another, without too many complications or big surprises, she finds it possible to follow.
Regular readers will know that art is the Dafter’s passion and solace. When well, she will happily spend hours in her room-cum-studio creating things. ME has gradually swung the door shut on her ability to do art at the moment. Whereas in the summer of 2011 she produced a piece of art a day, in the past eight months she’s been able to make perhaps five things. What she does is amazing, but it happens in these very rare windows of relative energy and clarity. She’s had to be very resourceful in terms of dreaming up things to do. For example, she did a project involving tearing up pages of magazines and making collages on large letters she’d cut out. Most craft projects – and there’s no-one craftier than the Dafter when she’s well – are too difficult for her. As she rightly points out, in a lot of projects, the hardest part is setting them up. She is too much of an individualist to allow me to do much, because she likes a project to be entirely hers. Colouring has been too difficult since the summer, sticker books generally are also too difficult. She does enjoy taking photographs, although uploading, sorting and backing them up is a very high-energy activity. So every day goes by very, very slowly.
Like so many teenagers with ME, she is socially extremely isolated. She has two friends, sisters, but they are busy with an extremely full life of sports, tutoring, activities, family holidays, going to the cinema, and so forth. The Dafter keeps in touch by iMessage, but any visits have to be carefully planned, may not be possible on the day, and have to be brief. She sees them about every six weeks or so. She is in touch with a few other teens suffering from ME and that’s helpful.
Trial and error, and the high cost of error
We have been very worried about her education, but have come to realise that in fact she is too ill to do much at all. We had such hopes for her working with the tutor from the hospital but that, combined with the CBT, was a disaster. The tutor simply didn’t seem to believe how unwell the Dafter was, and it was impossible for her to take things at the Dafter’s exceedingly slow pace. For one session, the Dafter was lying on the sofa, unable to speak or move, in one of her collapses. The tutor kept urging her “just to try”. There were many hours of distress during the five weeks or so of tutoring. The tutor was trying to assess the Dafter’s academic level, when most of the time the Dafter wasn’t even able to add 2 + 3. The tutor told all of us, including the Dafter, that she felt the Dafter wasn’t being positive enough. I will limit my remarks here to saying that I know that we aren’t the only family who has experienced this level of ignorance and being disbelieved. Being told to “try harder” is very common in ME and the suggestion that you can control the illness if only you really wanted to is devastating.
The CBT and the tutoring both just about pushed the Dafter right over the edge of her endurance, and I do regret that we went along with these things put in place to help her as long as we did. She suffered a great deal and was extremely low and extremely incapacitated for about two months or so. There were many days when all she could do was sit on the couch, crying from frustration and exhaustion, with us nearby. Fortunately she’s come back up a bit now that those two horrible pressures have been taken off.
The Dafter herself has set four goals that she wishes to achieve before she begins schoolwork again, and they are very reasonable. She wants to be at the point where she is:
- able to get out of the house almost every day
- able to read
- able to take in new information (i.e. watch a film or a new t.v. show and understand it)
- able to spend a little bit of time every day doing something she enjoys such as art
Since we stopped the tutoring and the CBT I have seen some glimmers of improvement. She has been able to watch familiar t.v. shows – things like Hannah Montana, which she watched when she was about 8. She’s occasionally been able to focus to do sticker books. And she’s been able to get out just a little bit more often than previously.
I know that she will make a recovery, with time. Her spirit, despite the immense frustrations and sadness of this illness, remains bright and strong at her core. She is a joy to be with and even with not being able to think straight she comes out with very insightful and clever observations. She’s loving and appreciative, and incredibly thoughtful about the impact that all this has had on us. I’m immensely proud of her for her courage, endurance and humour. And once again I thank from the bottom of my heart everyone who’s left such encouraging messages here on my blog. If you’re caring for someone with ME, you might be interested in my post Being a Parent-Caregiver: 40 things that help me.
And now I’m going to start thinking about Christmas. I will set up the Playmobil advent calendar today. Exciting!