I thought I would write a post about how the Dafter is doing these days with her ME/CFS. Over four years ago (six months after she fell ill) she was diagnosed with the condition and the paediatrician said that in her experience, it was usually four to five years for a full recovery. Clearly the Dafter will not be completely well in a few more months, but she is making steady progress. As I wrote here, the experience of having a frozen shoulder has helped me feel even more confident that, no matter how long it takes, she will make a full recovery. (My shoulder is almost completely fine now!)
Physical strength and mobility
The Dafter is slowly gaining strength. She still sometimes uses the wheelchair, and uses cuff crutches and a walking stick, but she can now walk about a mile a day most days, in total and with rests. So for example, I drop her off at school and she is able to walk across the car park, to her locker, and up to her classroom, to another room for lunch, and eventually back to where I am waiting in the car. Once she forgot her art portfolio in the classroom, and so I went back for it, because she didn’t have the strength to make that journey again.
She is managing to study two subjects at school, and goes four days a week for about three hours. She is often able to do two activities in a single day, for example she can now go to school and then go to an appointment, or go to school and then also do some homework later on. She can’t do that for too many days in a row, though. She still needs to rest in bed for many hours a day. But she manages to get out of the house almost every day of the week now.
She still needs a lot of help with everyday things such as getting dressed, taking a shower, tidying her room. We make all her meals and I keep her calendar and deal with appointments and prescriptions. But she will manage these things in time.
There has been a definite improvement in concentration. She still finds reading and writing very taxing, but she has managed to do the written work involved in Art and Photography. She began to be able to watch films last June. This is still quite a demanding thing for her brain – getting to grips with a new set of characters, a new situation and a new setting is challenging. Audiobooks remain too difficult, and although she has upon occasion re-read a few books she enjoyed some years ago, it would be very hard work indeed for her to read a novel.
She does still have what we call collapses. She doesn’t faint, but she loses all the strength in her body, and the ability to speak for a time. Whereas she used to have several collapses a day, lasting half an hour or more, now she has them every couple of weeks, and usually lasting only about 15 minutes or so. She also has a lot more warning of when she’s in danger of collapsing, so she no longer ends up on the floor.
For over a year and a half now she has been able to rest while doing something restful (as opposed to lying in bed suffering extreme boredom). Some people have recommended mindfulness and meditation, but the Dafter has found these practises make her extremely anxious. I think this is probably because she spent over two years nearly paralysed, mentally and physically, and so sitting still and observing her thoughts brings back terrible memories of being trapped and helpless.
However, this past autumn we discovered that she had become able to close her eyes and deeply relax while being driven in the car. Since November, I have taken her on what we call “rest-drives” almost daily. She says that although she never feels rested, the fatigue plateaus after a rest-drive, instead of continuing to increase as the day goes on. This is a great discovery! Her psychologist has pointed out that the brain does respond to movement, which is why we rock babies.
One of the strange symptoms of ME/CFS is sudden fluctuations in temperature. These have calmed down considerably in the past few months: the Dafter no longer has hot flushes, or becomes icy cold from one minute to the next. It makes deciding what to wear quite a bit easier!
The Dafter is still in some degree of pain, most of the time, but she is quite used to it by now. Her legs are often the worst, and we give her leg and foot massages almost daily. However, the pain is much less than it used to be. Two years ago, I joined a choir for the first time, and I found it agonising to leave to go to rehearsal every other week, because so often the Dafter was lying on the sofa crying with pain. She and Michael made me go, saying there was nothing I could do to help by being there, which was true. Those days are mercifully behind us! Interestingly, she says that she often can’t tell whether she is experiencing fatigue or pain – the two are very close. She still has headaches many days, but I notice she will mention them more often to me, which signifies that they are not always present anymore.
Her light and noise sensitivities are far better. We used to have to be ever so careful not to clatter cutlery or pots, because these sudden sharp sounds would make the Dafter jump and cry. Similarly, her fairy lights were of great use because almost any light was too much for her to bear. Now she can be out at a busy coffee shop, or even go to a concert. There are still times when she is so exhausted that she needs absolute quiet and low light, but it isn’t the norm.
Her skin is less sensitive than it was. For the first couple of years, she could hardly bear tights or jeans against her legs, and she lived in yoga trousers (which she found very depressing). That problem only happens occasionally now, and she is able to put creams and lotions on her skin again.
Her digestive system is very sensitive still, and she was diagnosed with IBS last summer. But that is very slowly improving, with the help of the FODMAP diet.
Getting up and out of the house is still hard work, but with our help, the Dafter can be ready to leave in about an hour and 45 minutes. (Mornings require a certain persistent technique. Michael has begun to master it as well. As he said, “I just have to think of it in the same terms as cooking something. You can’t let her go more than about 7 minutes, or you have to start all over again.”) A year ago, she couldn’t do anything before about 1 pm, even with me starting to rouse her at 10:00. Now one day a week she has school at 9 am, which she manages more often than not. On non-school mornings, she now often wakes naturally by 11 am, which is very good. I think by nature she is an early riser (like her Dad), and that the double whammy of teenage hormones and ME is beginning to wear off a bit.
Bedtimes continue to be an anxious time – I think because she spent two and a half years almost completely bedbound. But she is working on this, with our help, and it is very slowly improving.
Although the Dafter still has very dark circles under her eyes, her skin is much less pale than in previous years. I have heard from other parents of children with ME about the sudden pallor that descends. It’s so nice to see the Dafter with some colour in her face and even, after a sunny lunchtime outside this afternoon, a few freckles!
Getting through the winter
This past November, the three of us began dreading the darkest days of winter, as it hadn’t escaped our attention that the two previous Januaries, the Dafter had suffered a significant relapse. We were determined to do everything we could to prevent this happening again. We rented and ultimately bought a light box, which the Dafter feel has definitely helped. It’s important to use it for the allocated time, at the correct distance, and definitely before noon. So this has required planning, and on the Dafter’s part, sacrificing long lie-ins. But she’s persevered, and it really seems to have helped. Soon we can put it away until September. I also upped her Vitamin C intake, gradually. She takes various supplements – I won’t list them all here! – but I feel Vitamin C is very helpful. We also invested in a humidifier, to help her nagging sinus problems. I never thought I would need a humidifier in Glasgow! But it made a difference.
Low Dose Naltrexone
The Dafter has been taking this drug (not to be confused with Naltrexone) since last summer, very slowly building up to the maximum dose. In the UK you can only obtain it through a private clinic; in the US and other countries it is widely used for a number of conditions, including ME/CFS and MS. We believe that it helps her symptoms. She experimented by reducing the dosage slowly over a period of weeks, and discovered that her brain fog, fatigue and pain all increased. When she built up the dosage again, they improved again. You can find out more on the website of the LDN Research Trust.
Anxiety (and depression) are considered to be common symptoms of ME/CFS. There are a variety of theories about which causes which, the amygdala, the hypothalamus, and so forth. Whatever the explanation(s) may be, it is certainly true that for the Dafter, anxiety has been a frequent companion of the fatigue. Of course, when you have been confined to your bed for several years while everyone else is growing up, going back out into the world is understandably terrifying. When she started back at school, just three afternoons a week a year and a half ago, it was extremely daunting for her. Since then, although many ordinary situations have been new to her (taking a train, going out with friends, buying something in a shop on her own, using a cash machine), she has battled through her anxiety. She still gets a bit anxious before school, or before a new situation, but she is far more confident.
Isolation / social life
The isolation of ME/CFS is, in my opinion, the most devastating aspect of the experience. In my view, you can take all the symptoms I have listed above, and together they do not affect a person as much as the loneliness that so often accompanies illness. Early on, we were told, “pacing is everything”. I agree that pacing physical and mental activities is very important for recovering from ME/CFS. But in my experience, joyful experiences with other people are one of the most healing things there can be. Of course, it depends on how introverted a person is. The Dafter is an extrovert.
I have come to understand that contact with other people is the most single important thing for the Dafter’s survival. During the years she was bedridden, she often went many weeks without seeing anyone her own age. Five weeks, then a visit; seven weeks, then another visit; then another four weeks, and so on. I thank God that she is now well enough to go to school part-time, where she has made friends and has had a chance to learn some of the (admittedly sometimes crazy) goings-on of teenagers in groups.
For a long time, the Dafter thought that the reason no-one wanted to come see her was that she was unloveable. Now she has had a chance to have a positive mirror held up before her, by her peers. Of course it isn’t always plain sailing, and high school kids can be nasty, online and In Real Life. But the Dafter now has a social life. She has the chance to go to parties! Of course she must plan well in advance, and allow for a couple of days to recover. But as far as I can see, the benefits of an evening of normal teenage fun give her energy that no amount of careful resting in bed could. She mostly sees her friends at school, but they keep in touch over the internet as well, and I hope that once school is finished, they will be able to keep up their friendships. I do think that, at this point, she knows that whatever she goes on to do next year and in the future, she will find friends, because she is a good friend to others.
The Dafter is able to get along with people of all ages. She loves Glasgow, which is a lively city, where people to chat to you in the street and on the bus. So although she still needs my and our help with almost every aspect of her daily life, she is definitely on her way.
And just in case I may have misrepresented our family life, I will leave you with another one of the photos the Dafter took of us this afternoon:
Thank you to the many readers who, over these past years, have left encouraging comments here. Our family has hugely appreciated them! And so on we go…