It won’t be news that I have ME/CFS. My very first post in this blog alluded to it, although I now realise I have never actually written about it explicitly. Now feels like a good time to reflect on it, for a number of reasons: a few weeks ago I got my official diagnosis letter (which seemed quite funny and arbitrary but actually has caused a shift in how I think about things, which I’ll unpack a bit more later), I’m on the cusp of becoming busier than I have been for several years and a little nervous about how that will go, and also one of the bloggers who I follow has a daughter who has just been diagnosed with post-viral fatigue, and I hope that some musings from someone who has spent eight years adjusting to life with ME/CFS might be useful to them.
September! This time of year has always felt more like the start of a new year to me than January ever does, perhaps because January is so dark and miserable that it’s hard to feel optimistic about the future. Or perhaps because I’ve only spent one year in the last 23 not in education, one way or another. At any rate, September is always my fresh start.
I’ve been terrible at blogging for the last couple of years! I’ve been keeping a sort of journal elsewhere on the Internet but I do miss my little blog, and have still been reading other blogs when I have time.
In my last post, from September 2017, I said that there was another post “coming soon” with details of the important things that happened during our six weeks living in a caravan. Well, that was clearly inaccurate, but I have returned to update you. I’m sure the suspense has been agonising.
We moved into the caravan on June 30th. And on July 8th, we got married!
Gosh, has it really been seven months since I wrote a blog post? Part of me can’t believe it’s been such a long time, and another part of me can’t believe it’s only been seven months. It’s been a busy summer and I’ve crossed more than one thing off my bucket list!
So last time I checked in, it was February and I had just had my 26th birthday. I’d recently started a Masters course in Child Welfare, we’d had our anxious rescue dog for six months, and I was rehearsing for the local light opera group’s spring production. We were settled into the cottage and Naomi was in the swing of her clinical psychology training. Paige was still wary of the dog, but we’d put up baby gates and everyone was fairly comfortable. I even remember musing that it would be nice to have a period of stability where I could catch my breath and put down roots after several years of constant change.
But of course such a state of stability could not last! In April, we were visiting Naomi’s parents for Easter when we got a slightly odd text message from our landlady, asking where we were thinking would be a more suitable place for us to live long-term. I assumed this was something to do with the conversation I’d had with her about how we’d like to make the front garden a bit more wheelchair-accessible by returning what had once been a gate but had been blocked up by a trellis to its former state, and a passing comment I’d made about living somewhere less hilly. Naomi wasn’t so sure. Either way, we didn’t reply immediately as we were on holiday.
Two days later we got another text: the landlady had decided to sell the house. She wasn’t going to renew our tenancy and we would have to move out.
It was my birthday last week, so Naomi took some days off work to do exciting birthday things. One of them was going to Brighton for the afternoon, to visit our favourite shops: Lush, Boho Gelato and Purezza. Brighton is full of vegan cafes and restaurants, but I figure why fix what isn’t broken, so we go to Purezza and Boho Gelato whenever we’re there and I always get a mushroom pizza. What can I say, I’m a creature of habit.
Anyway, we parked near Brighton Dome and as we got out of the car I spotted a poster advertising Josie Long’s current tour. I pointed it out to Naomi, because the name Josie Long seemed familiar and I felt that it was in some way linked to Naomi – perhaps she had mentioned liking her, or expressed a wish to see her. Naomi seemed pleased and we headed over to look at the poster. Aha! Josie Long was playing in Brighton Dome this very weekend. We tracked down the ticket office and booked tickets, pleased to find there were still some available.
It wasn’t until we got home and were telling Naomi’s evening PA about our day that it transpired that each of us had thought the other was a big fan of Josie Long and neither actually knew who she was… Concerned that her name might have been familiar to me because she had been slated for being a racist homophobe or something, I checked the blurb for her show. It seemed encouragingly non-racist and non-homophobey, so we laughed at our ridiculously English communication and went along to the show. Continue reading
Three friends came to stay this weekend, to celebrate my birthday by eating large amounts of pizza and ice cream and playing board games. This morning between meals and games I took the opportunity to rope a couple of them into doing a short Yogaia class with me. Anna had never done yoga before, I had done about half a dozen beginner’s classes and Heidi is an experienced yogi, so it was quite interesting.
Anna and I were laughing uncontrollably as we utterly failed not only to get into the poses but to even understand what poses we were supposed to be in, while Heidi calmly folded herself up like some kind of human origami project and maintained a zen-like focus. I don’t think Anna and I are constitutionally suited to yoga, but perhaps the zen-like focus and the origami-flexibility both come with practice.
Benny is a natural at yoga – his favourite resting position is one we like to call “froggy doggy”, where his back legs are splayed out behind him and his pelvis is flat against the floor. Sometimes he lies down and carefully maneuvers his legs into this position, but other times he begins in a downward dog position, then raises his head to stretch his back legs right to the tips of his toes, and allows his feet to slide out from underneath him.
I’m not nearly as flexible as that, and I don’t particularly want to be able to swivel my hips 180 degrees and lie flat on the floor, but I would like to be a bit more supple. I’ve also got ongoing discomfort in my shoulders and upper back; this is partly due to a tendency to tight muscles that I’ve inherited (hi mum! Hi granny!) but also thanks to my terrible posture. Add to all of that the fact that my brain goes 100 miles a minute and I am not very good at simply being, and the upshot is that yoga would be great for me.
I’ve looked into going to a yoga class several times. When we first moved here, I found there was a Ballet Fit class at the local sports centre. The idea of combining ballet techniques with yoga seemed intriguing, but also terrifying. When I think of ballet, I think of tall, thin, beautiful young women with perfect poise and grace. That’s not a description I would apply to myself! Yoga brings to mind athletic, bendy, healthy-eating overachievers who get up at 4am to meditate and wear Lycra at every opportunity. That’s not me either.
Everyone needs a hobby. I have some which have endured for decades – singing, reading, getting excited whenever I see a dog, a cat or a baby – and some which are more recently acquired – sewing, accidentally trespassing in pursuit of public footpaths, putting little jumpers onto the dog. And, it would appear, studying.
I met someone today who asked me the question that’s become this post’s title. We were meeting with a view to me becoming their occasional babysitter, which is always an odd mixture of relaxed and casual, and job interview formality. I have profiles on various childcare and tutoring websites which set out the rough details of my work history and current situation, but without exception I have always been asked to tell the prospective client family what I do (which seems only right, if they’re considering entrusting their offspring to my care).
I liked this turn of phrase particularly, though. Not, ‘What do you do?’ or ‘What’s your real job?’ – I was once asked that, immediately after I’d told the questioner what my jobs were; apparently they weren’t real enough for his tastes – but, ‘What are you about?’ It seems to take the focus away from paid employment and onto purpose. For some people they’re one and the same, and that’s great, but for many of us there’s more complexity to it.
It’s an unseasonally warm day here on the south east coast. I left the house this morning in boots, a hooded jacket and a warm coat, wishing I’d thought to find my woolly hat. By lunchtime I was carrying my coat over my arm, jacket unzipped, and wondering whether I might need to find my sunglasses instead.
I’m more aware of the weather these days, because I’m outside in it every morning, walking the dog. We’ve walked through thick fog, in depressing drizzle, in bright sunshine and on dull grey days. If it’s been raining lately, I make sure I wear boots instead of my thin-soled pumps, and if it’s really hot I carry water for both of us.
Nevertheless, the weather is more of a footnote to my day than a major issue. Even really bad weather isn’t often life-threatening here. A typical British drought means brown lawns and unwashed cars, and most British storms just damage trees and distrupt broadband connections. When it’s really cold outside, I make cups of tea and huddle over them for warmth, or warm myself up with a hot bath. On hot summer days I freeze diluted fruit squash to make home-made ice lollies, and take a lukewarm shower to cool down.
Water is so mundane and everyday, but it’s critically important. Sometimes it’s easy to forget that when we can so easily turn on a tap and get clean, safe drinking water. I first began supporting WaterAid at the height of the Ebola crisis, because I suddenly realised how essential it must be to be able to properly wash when you’re caring for someone with such an infectious virus. I couldn’t invent a vaccine or manufacture cheap diagnostic tests, but I could help people to wash their hands. Continue reading