This post won’t be of interest to everyone, so feel free to come back another day!
The Dafter on a recent good day – out of the wheelchair for a few minutes in the park.
Many of my regular readers have been incredibly kind in sincerely wishing our family well during our daughter’s (the Dafter’s) illness. It’s been some time since I wrote an update about her (here), though I’ve mentioned her in writing about our family life. How is she? Not great, but could be worse, is the answer. She’s been wanting to write an update on herself for me to post here, but that’s been too difficult for her to manage.
It’s a well-known fact that ME/CFS (myalgic encephalopathy / Chronic Fatigue Syndrome) has its ups and downs. The Dafter was doing better last summer after going on iron tablets, but suffered a severe setback in August, after our move to Glasgow and trying to go back to school part-time. In October 2013, she was only able to be out of bed a total of 20 minutes a day, and that was a struggle. By December, she had built up to being out of bed a total of an hour and a half a day, and was able to get out of the house (with the wheelchair) about three times a week. Before Christmas, she went to school on two occasions for about twenty minutes each time.
Her concentration was still very badly affected, but improving a bit. For example, at Christmastime when she forgot what she was going to say she could usually remember within a few minutes – a big improvement. Reading has continued to be too difficult. Writing is challenging, as is watching things on television that require a certain amount of concentration (for example, we tried to watch an episode of the Waltons recently, but she couldn’t follow it). At Christmastime she finished a drawing that she’d worked on in very short periods of time over two months. Although drawing and painting haven’t been very possible, photography has been a joy for her. Sorting through the photographs after taking them is tiring but she can do it in short spurts.
We had a lovely holiday at Christmas, with lots of company, and she was on her feet quite a lot inside the house. Then she caught a cold, which turned into a chest infection, and we have been through a real “two steps back” phase. She hasn’t been able to go back to school at all, and hasn’t been able to get out of the house much. She’s been working on a paragraph for school but hasn’t managed to finish it. Tackling schoolwork is very stressful for her, and after you’ve missed two and a half years of school, it doesn’t get any less stressful. She has a lot of pain in her body – the myalgia (pain) of Myalgic Encephalopathy and also fibromyalgia. Michael and I give her a lot of foot, leg and back massage to help ease the pain, as well as give her painkillers. She cries from pain very often, which is hard. The physiotherapist has been very helpful in teaching her how to sit and lie, and do some basic strengthening exercises.
I won’t go into the many, many treatments and therapies which we have tried in the past, are currently trying, and are considering trying. There are a number of theories about what causes ME, but the fact is that so little biomedical research has been done on it that no-one really knows for certain. Recent research at Newcastle shows that there are differences in how cells develop in the muscles of people with ME versus healthy people who are sedentary.
The greatest struggle for the Dafter, as you can imagine, is keeping her spirits up. She has very little contact with other people, although the online world is a great blessing. Because she’s not often able to go out, I have done my utmost to find other young people for her to meet. She has our former neighbour, and another teenage girl across the street, who visit her from time to time. She also has been visited by a local church youth group. A local Association of Young People with ME group is being set up, which she may be able to attend. And she meets any friends of mine who come to the house for a cup of tea. Our neighbourhood here in Glasgow is much livelier than where we were in Aberdeen, and it’s not unknown for people to pop in unexpectedly. Her bedroom looks onto the street and she feels more a part of the outside world than where we lived before.
I wake her up starting at 8 am, but it often takes her an hour before she can sit up to eat her breakfast from a tray in bed. In the morning she rests, on her bed but sitting the other way. She passes this resting time by watching various children’s tv shows (she can follow a tv show if there aren’t too many new characters or situations, so series are great), doing jigsaw puzzles on her iPad, and playing games like Bejewelled. These are all activities that take minimal energy but keep her from going mad with boredom. She can’t manage to get out of bed for long in the mornings, but on a better day, once she’s had lunch (also eaten in bed – I almost always join her for lunch in her room), and another wee rest, she may be able to get dressed and from there leave the house. The earliest she can leave the house is about 2 pm. She aims to get out of the house on Mondays, Wednesdays and Fridays.
On a rest day, or a day when she’s too tired to go out, she stays in her room in the afternoon but tries to sit for short periods of time at her desk, perhaps to do some art if she’s able. She also tries to do her exercises and to walk around a little bit. Sometimes she comes downstairs, which is great to see. She and I have certain projects that we do together – she’s not able to do much in the way of crafts, but sometimes we can do simple things (decopatch), or sing songs together, or we dub old family videos. On a bad day I try not to leave her alone for too very long, and I give her massages to ease the pain. Sometimes we do a little waltz together, just to get her on her feet but with a bit of support. We can be very silly – because you have to laugh. And the Dafter is very funny. The other day she turned to me and said, “I could tell you the story of How I Met Your Mother.” That still makes me laugh!
She comes downstairs, with our help, at tea-time. She has been trying to sit up to eat tea at the table but recently this has almost always been too painful and difficult. Many evenings we all eat off our laps in the living room. We watch Neighbours together – always good for something to talk about! – and she has begun being able to watch the Scottish news with us afterwards, which is great in terms of building concentration. Evenings are family time, though if I haven’t been out of the house all day long I may go for a walk and sometimes Michael comes with me. Her friends are often online in the evenings and so she may have more “company” then. And we usually have a DVD box set that we watch one or two episodes of. She has seen all of Friends three times now.
I set things up for her shower about 9 pm and stay nearby in case she has a collapse. She often gets a bit of an energy surge in the evenings (like most teenagers) and can be very chatty then. Getting ready for bed is a slow process because she needs to rest frequently. Bedtime is about 11:30 pm.
She was 13 when she fell ill, and she just turned 16. She cried for an entire day the week before her birthday. She felt she had nothing whatsoever to show for the last two and a half years of her life, and was imagining that all other girls her age were having special parties with all their friends. I didn’t try to jolly her out of it, because I felt she really needed to grieve the devastating impact this illness has had on her.
However, as hard as the situation is, we all know that it could be worse, and indeed it has been worse. There are other children who are completely bedbound with ME, and we know there are young people who have had ME for over 10 years. We believe that the Dafter will someday, somehow, recover. I think she’s incredibly brave – I can see the struggles that she goes through every single day.
What are the upsides of this situation? The Dafter herself is determined to be as happy and positive as she can be. I think she has matured enormously, and has even more compassion for others than she would have had. She’s much more attuned to nature than she used to be. She can no longer remember what it was like to be well, but she has dreams that she can walk half a mile without having to stop to rest. She still looks forward to her breakfast when she goes to sleep at night! As a family we’re very close. She’s very reflective, and interested in philosophical and spiritual questions about life, particularly about suffering. She’s also interested in the debate on Scottish independence, which she will have a vote in. She and I have a lot of time together, and many chats about various things. She shares her music enthusiasms with me, and in her words “we fangirl about McBusted together”. When Michael is looking after her, they invent silly games (recently, a combination of curling and football played with bottle caps on the dining room table to try to extend the time she could sit up). They also have long bouts of Twenty Questions and something called the Yes/No game. Perhaps the biggest plus of our experience with ME is that we really appreciate even the smallest things: she got outside in the garden, hooray! She walked more than 50 paces, hooray! It’s raining, she loves to be out in the rain! The sun is shining – let’s have a party!
At least these days she can get up and down the stairs without collapsing and getting stuck, she is able to go to the loo unaided, and she can get her clothes onto her body by herself, even if it is a slow process. These last two (loo and getting dressed) are significant to our family because if she doesn’t need my help with them, it means that I can take some breaks from caring for her.
I thought I’d write about how I’m doing in a separate post. Okay, all things considered, is the short answer.