To begin with the weather, like Katharine Stewart we had a sunny St. Bride’s day, so presumably we have “the hauf o’winter to come and mair” (half of winter to come and more). It has continued very sunny, and very cold. The birdlife in the park has been confined to an even smaller area of the pond as it’s been almost completely frozen over.
Stewart’s essay for February 6th describes a spring-like day in winter: “The snowdrop month came in with much chirping of finches… Fresh snowdrops were opening daily and a blue primula was venturing into flower in the shelter of the ivy-covered wall. there was warmth enough for the bees to fly down looking for their beloved crocuses. They were not disappointed.” (p. 42) Well, the snowdrops are out here, but not the crocuses, although their leaves are poking up:
On this day about twenty-one years ago, Katharine Stewart had a picnic outdoors with friends who came by: “I spread a rug on the short, dry grass and entertain them out of doors. To go inside would be unthinkable. It’s a day for the first picnic of the year. Soup and sandwiches, taken under a sky of speedwell blue, in the company of singing birds and happy bees… There are gales to come and blizzards and floods. But a February day of sun and calm makes the most memorable entr’acte in the drama of winter.” (p. 43) We have not had picnic weather this week in Glasgow. If I have friends stopping by, it would be unthinkable not to invite them inside by the fire. But I’m sure we will have some “entr’actes in the drama of winter”.
Many of you have been following the unfolding story of the Dafter’s ME/CFS over the past few years, and I thank you most sincerely for your interest, encouraging comments and prayers. I mentioned a few weeks ago that she had been feeling worse again, and had been hoping it was low iron, but it was not. She has had a pretty bad relapse in fact. However, things are not as bad as they could be.
For most of January her health plummeted downwards, which was frightening for all of us. We were back in the days of her crying with pain, needing a lot of help to move about the house, not able to leave the house very easily if at all. Since the holidays she has had to drop her volunteering, her babysitting, and a lot of church activities. She has thought about using the wheelchair again, but we haven’t actually got it out of the loft. But I’m happy to say that during the past week, her health and energy levels seem to have stabilised and even picked up a bit, which is a great relief. In the past six days she has managed to get out of the house to do something for about two hours nearly every day. Sometimes she’s also has enough energy to do a little bit of schoolwork or some other project, but mostly she has to rest apart from those couple of hours of activity.
She has managed to keep going with school to some extent. The brain fog is once more very bad. However, the school has been hugely supportive. She doesn’t have to sit her prelim exam until she is ready, which may be another couple of months, and she will be allowed to type instead of hand-write. While drawing and painting are now (at last) possible for her to do on most days, reading and writing remain very difficult. In fact, her language skills generally are clearly affected by the ME. She muddles her words and syntax when speaking, sometimes to comical effect. One example is: “There’s no happy fruit! I mean, there’s no fruit that I like!” So doing a two-hour written exam is going to require a lot of training and building up. She has had two writing practice sessions. She managed to do 13 minutes the first time, and 20 minutes the second time. I will be her coach for the exam, both in terms of learning the content, and also in terms of helping her build up to taking a 2-hour exam. The actual exam is at the end of May, so we have some time.
As usual one of the hardest things about being so ill again is the social isolation. We know that it’s vitally important for her to be with other people, especially other people her age, and for her to get out of the house every day that she can manage. One of the difficulties is that the Scottish school system for her age involves many weeks of “study leave” in the spring. There are three weeks of study leave and holiday at the moment. She has been going into school to work with the teacher on her portfolio, but none of the people she has lunch with are there. Classes will resume in mid-February, but only for 7 weeks. After Easter there is study leave for the rest of the year – a big gap, from April until August. She has never managed to break into the lunch crowd to the extent of being invited to socialise with them outside of school. In her words, “If you’re not part of the group from the beginning, you’ll always be a visitor. They’ve known each other from primary school.” Teenagers are all very busy, and if you can’t manage to come to the group or to school, then in most cases you just have to accept being by yourself. The internet does help a bit with this but isn’t a replacement for face-to-face contact. And the Dafter wants nothing more than to be with other people. As one friend of the family put it: “She is a gloriously gregarious girl.”
I know that other teenagers with ME/CFS find social isolation a huge problem. It’s good to know that you’re not alone, but at the same time it’s really very hard to live through. She was 13 when she fell ill, and has just turned 17. At a time of your life when you aren’t feeling tremendously confident or sure of who you are, it is easy to think there must be something wrong with you.
But she is enjoying life as she can, and she has definitely gained confidence since last summer. She and we both know that things could be much worse. For example, she is still able to eat all meals at the table – something she was unable to do for nearly the first three years of her illness. And she will have learned something from this relapse. She was already very good at pacing herself, and trying to avoid stress, and she is even more finely-tuned to her physical and emotional state now. After three and a half years, it would be wonderful if this illness disappeared tomorrow – and I continue to focus on the idea that she will make a complete recovery – but we have to be realistic and just get the most out of each day.
I continue to work with the 40 things that help me. We are back to a rhythm of life in which either myself or Michael must be on hand pretty much all the time to help the Dafter, with transportation, meals, appointments, life in general. But I fix my mind on the idea that this is a stage we are passing through again, and that every day is a day closer to her being well, and able to lead an independent life. I am very grateful that Michael can do so much to help, and I’m grateful to be more settled here in Glasgow, to have the choirs I sing in, and my church. Even on the most difficult weeks, I can see other people on Sunday mornings and one evening, and those singing-praying times shine like beacons for me. Michael and I have worked out times for me to have other breaks, get-togethers and fun times in the months ahead as well.
Having written about how unwell she is again, you may be amazed and possibly disapproving when I tell you that today we are heading, for the first time as a family since we left in July 2013, north to Aberdeen. The main purpose of this winter trip is for the Dafter to be able to see her friends there again. She has a week off school following, so we hope that she will be able to recover fairly well. One of the things that we have learned in this journey is that sometimes doing physically tiring things is worth it if you are able to have an experience that brings you joy and emotional energy.
Fingers crossed the weather will smile upon us. I imagine I may have some photos to show you once we are back! I wish you all a great weekend. Let me know if you manage to have a picnic, wherever you live!