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.
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.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.)
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]