Living with Lupus

This is my best friend Beth. She has Lupus. Despite this, she brings a lot of love and laughter into my life, tells it like it is, encourages and prays for me, and bakes the most amazing cakes. I love Beth and am so grateful for her. This is her story, of life with Lupus, in her own words – although I take the credit for the grammar and punctuation!

“Well, how do I describe the disease that has caused the biggest change to my life plans and dreams than I could ever have imagined? It’s been a bit like a very slow motion but painful train crash. For me, it’s been like having the worst job in the world, but you don’t get to quit and rarely get a holiday. I used to be independent, travel the world, hike up mountains… Heather wrote in one of her Christmas letters that I made her tired just watching me.

Lupus is an auto-immune disease so I am my own worst enemy. My body’s own immune system – instead of coming to my defence – attacks me in all sorts of places: lungs, heart, joints and fatigue like you wouldn’t believe… I can sleep all day and night and it doesn’t seem to be any better. It has improved a bit with treatment but there have been times I have been so tired I could sleep round the clock and had to set my alarm to wake up for meals and tablets. Then there’s the hair loss, mouth ulcers, sores on my feet. You go back to bed after the shower because it felt like climbing a mountain. I’m also particularly sensitive to the sun and it makes the Lupus I have worse, so sun-block, hats, long sleeves and window film so the UV doesn’t get through the windows. And when everyone else runs outside I’m legging it as fast as possible in the other direction. But this means picnics, barbecues… all the summer social stuff… is incredibly hard and reminds me I’m not quite “average”.

But the treatment side effects have sometimes been worse than the disease: one medication caused me to lose over 10kg and only weigh 45kg, and most of that was muscle.

I have learnt who are my true friends and I have some of the most fantastic friends. Some people sadly struggle with me being ill and drifted away. It’s meant I have had to give up my career and my job as a nurse and I have had to swallow humble pie as I have gone from helper to needing lots of help even for the small stuff, like preparing meals and shopping.

But my hopes of a normal life died too, that of a family, house, children… all gone.

The thing is I often look well yet can feel so dreadfully ill. But it’s not all down-side. I’m lucky enough to have the most fantastic GP, Dr Baxter, who has saved my life on more than one occasion. He never doubted me in the 18 months it took to get a diagnosis. I have a pretty amazing set of consultants too. I have had 12 different consultants in 12 specialities in 12 years. With all the tests and blood tests that go with them. Occasionally communication is not what I would always like it to be in the cash-strapped NHS, but I don’t always do a good job at it either. I can get to be impatient at times. I’m on over 200 pills and am currently facing the prospect of learning to give myself intra-muscular injections for emergences for a condition related to side-effects of one of the medications I’ve been on long term.

Yet the other challenge was to learn to let God love me for being a human being, not what I could do for others or for Him. It’s challenged my faith and I have more questions than answers, but so far an undying belief that there is a God who cares about me. I know other people’s prayers have saved my life. But I hope I am also less judgemental, wondering why someone is the way they are if having a bad day, and know there are so many reasons we behave or act the way we do. I have learnt to try to enjoy the small stuff (watch the birds!), and there is nothing as good as saying today is a good day. They are rare but oh so wonderful.



Domestic motivation

By the time the kids are in bed, I am really not in the mood to start tidying up their mess. I inevitably end up pottering about on the internet for a ‘few minutes’ which usually turns into most of the evening. I need a solution, before the house descends into utter chaos. If only cleaning up was more fun…

Well, let me tell you, it can be – when you put Real XS radio on, loud. Perfect domestic motivation.

Venus in transit

Last night, Venus crawled its way across the sun for the last time until 2117. This what it looked like, in case you missed it.

A lot of people missed it. In the UK, all but half-an-hour of the transit happened overnight, and that which should have been visible was shrouded in heavy cloud – at least it was above my house. There were some good views in the USA, but many of the stargazers gathered in New York for an evening’s entertainment had to battle with rain clouds too.

The internet is alive today with beautiful images of our nearest star with that little black dot creeping across it, but the prize for ‘best photos of the transit’ goes to NASA. The one above is the most beautiful thing I have seen in a long time, and it can be downloaded as computer wallpaper – a nice touch. This one, taken from the ISS by astronaut Soichi Noguchi, is pretty excellent – but his fellow astronaut Don Pettit has upped the ante here. Enjoy.

48 hours in London – with a 5 year-old

A whistle-stop tour of some of London’s tourist hotspots may not be everyone’s idea of fun, particularly with a 5 year-old in tow. But then again, my eldest son is no ordinairy 5 year-old. Yes, I am biassed.

I first took him to London last year, when he had started school nursery and so had primary school holidays, whereas his brother was still at private nursery. The Whit holidays for primary schools in our area last two weeks, whereas those for secondary schools last one week; hence his Dad (sixth-form Maths teacher and provider of school holiday childcare) was still teaching. Myself and my boy ended up at a loose end for three days, and decided to do something exciting – to go to London, stay with a good friend of mine (even if it was on a sofa and mattress in the lounge/dining room), and see the sights.

Growing up in the north-east (Hull, to be exact), I always thought of London as a mystical ‘far away land’ detached from everyday experience. I never visited as a child, and my contemporaries either viewed it with sentimental reverence or barbed distain. I don’t want either for my children; the museums, art galleries and architecture in London are amongst the finest in the country, and are part of their heritage. They should grow up knowing and loving them, regarding them with a light-hearted affection.

My son did very well on that first visit, although the travelling about took it out of him and he got very tired at times. This year, he had more stamina and was more interested in the detail of what I had to show him. We had a brilliant time and crammed an awful lot into just over 48 hours.

We got the train down, which takes about two hours from Manchester and works surprisingly well, providing you are armed with an activity book or two. I packed a large handbag for the daytime and managed to get the rest of our stuff into a 25l rucksack, which is small enough to be accepted into the cloakrooms at most museums and light enough to carry up and down the steps at Tube stations and not cause too much consernation in crowded carriages. Unfortunately, I left it too late to book into first class, which is a shame as we got free sausage sandwiches (i.e. breakfast) last time… plus, I got to savour the look of sheer horror on the faces of fellow grown-ups when I placed a small child in the expensive seats… and their relief when they realised he is actually a pretty well-behaved small child. Yes, I take full credit for that.

We arrived around lunchtime on Monday. I strapped on his ‘busy place wristband’ (carrying my mobile number), then we picked up some lunch at M&S at Euston Station, and walked to Gordon Square for a picnic. It was a beautiful sunny day, and many staff and students of nearby UCL were out in the garden too, sitting in small groups on benches, walls, lawns, and under trees. We were also joined by some over-friendly pigeons and squirrels, but if you’re 5, this is positively delightful. I was intrigued to discover that the Bloomsbury Group had picnicked there just over a century before; illustrious company indeed.

After that, it was on to the British Museum. I absolutely love the eclectic collection here, and the museum shop will happily provide (for a small fee) a children’s guidebook which lists 10 things to spot in various galleries, as well as collections of objects on particular themes. We did the 10 objects ‘treasure hunt’ last time, which went down well, and this time the boy selected animals to hunt for – which was going ok until the tortoise and the peacock turned out to be in the Islamic World gallery, which was closed. We were somewhat over-charged for a Diet Coke in the café and for icecream outside, but it was a hot day, and considering entrance to the museum itself is free – as is usual in the UK – I didn’t feel too aggrieved.

I charged up my Oyster Card at Russell Square and we descended the 175 steps to the Tube (there is a lift, but the spiral staircase is more fun) and made our way to Charing Cross and from there to St Martin in the Fields, which has a brilliant cafetiera-style cafe in the crypt. It’s fabulous value for money, with good quality eats and free iced water, and a relaxed and friendly atmosphere; the cool, subterranean air was also welcome after such a hot day. It’s not well-known, but I always eat there if I have a couple of hours to kill in the early evening in London, waiting for the more affordable trains. Strangely, it’s particularly welcoming if I’m on my own; it seems to attract single men and women who are content to sit and read through dinner, so I have never felt vulnerable or conspicuous becoming one of them – a rare thing indeed.

After that, we made our way to Wallington via Victoria, where I tucked a very tired boy up into his bed on the sofa before drinking wine and talking late into the night with my friend.

The next morning, we got the 9:48 into Victoria (to avoid the commuter rail fares) and on from there to Embankment. We strolled across London Bridge in the sunshine, pausing to take in views of Tower Bridge, HMS Belfast and The Shard. We walked on past Southwark Cathedral to The Golden Hinde, which my son instantly classified as a ‘pirate ship’ before spending a happy couple of hours exploring all four decks (particularly the one with cannon) and the captain’s quarters. He couldn’t quite decide whether he wanted to be the captain (particularly after trying out the ship’s wheel) or ‘the one who fires his cannon furthest and fastest’. It was surprisingly hands-on and accessible, and we were fortunate enough to get there and have it to ourselves before a school group arrived, at which point it was somewhat overrun – it is not a large ship, despite being designed to carry 60 crew!

We paused for lunch at Southwark Cathedral, which was excellent, decent value, and surrounded by a striking exhibition from the City Lights series by John Duffin. Afterwards we strolled down the south bank in the early afternoon sun, hand-in-hand, wearing our shades and summer clothes… it doesn’t get much better than that.

Our destination was HMS Belfast, which was vast by comparison to the Golden Hinde (not surprisingly, as it was designed for 1000 crew!) but similarly hands-on and accessible. We explored the decks, guns, shell room, and exhibitions describing the ship’s development and major battles, and what it was like to live on board. I felt a lot more comfortable talking about where people slept and what they ate, than the details of weaponry, sights, explosives and radar – warfare is something I really have no enthusiasm for. My eldest was in his element, though, so – mission accomplished.

After that, we had an hour or so left before it was time to travel back to Wallington again, so we jumped on a Thames Clipper to the London Eye, then back on the Underground to Queensway, for a quick play in what is possibly the best playground in the world: the Diana Memorial Playground in Kensington Gardens. Next time, if the weather is good, we will spend the whole afternoon there – if not the whole day. As it was, my son had time to explore the pirate ship very well indeed, which was fitting considering the boat-related theme of the day. I just-about dragged him away in time.

The next morning we only really had time for one thing, and if you are 5 you cannot come to London and not see the dinosaurs at the Natural History Museum. Last time, we visited to find they were being cleaned, so I was very glad to see the exhibition was open again – and so was my eldest. We must have spent over an hour looking at all the skeletons and having a play with many of the interactive elements. After an expectedly expensive trip to the shop, and an unexpectedly expensive tea and cake stop in the café (in retrospect, not too bad… perhaps I’d just had enough of ‘London prices’ by this stage), we did a quick tour of the mammals gallery – complete with lifesize blue whale – and found some hidden gems in the old-fashioned wood and glass cases of the minerals gallery, shown in the photo above. There is an area to the rear of this gallery called The Vault housing precious stones, including the Aurora Collection of 296 diamonds in myriad colours and shapes and sizes; beautiful.

Obviously there was much more to explore, including a visiting exhibition entitled Animal Inside Out from the team behind Body Worlds (my son was moderately intrigued by the plastinated and dissected camel from the exhibition in the Central Hall, but didn’t particularly wish to see more). I also missed visiting the adjacent Science Museum, which is also fascinating and very well presented, but has a more contemporary feel – we visited last time, and my son particularly enjoyed the engines in the entrance hall and Launchpad, a large area designed to help kids get ‘hands on with science’.  The Natural History Museum and Science Museum are a day out in themselves, but there is also the Victoria and Albert Museum just around the corner, for older kids (and parents) interested in art, craft and design.

But we were out of time. It was back to Euston again, via M&S for a late lunch, just in time to catch our train. A lot of wonderful things in a short period, which we will be talking about for weeks and months and maybe years to come.

Aspiring or becoming?

I stumbled across this interesting blog entry by Lea Woodward the other day, which comments on how we describe ourselves in those 160 characters of ‘Bio’ information on Twitter profiles. Apparently, there is a tendency towards describing ourselves as ‘aspiring X’, indicating who we would like to become (X), rather than who we are. Such statements are reminiscent of the lady in the photo above; they use the Twitter Bio as viewpoint from which to gaze wistfully into the far distance. A popular one is ‘aspiring location independent’, indicating the desire to be able to roam the world unfettered and do our thing wherever, which seems very romantic… in principle.

I haven’t noticed this, but I am new to Twitter and am there as a professional scientist, relating to others in a similar line of work or the relevant professional bodies. The people I’m connected to are more than happy to list their actual credentials and – on the whole – wouldn’t dare blag it. In many cases, myself included, we tweet as a form of personal marketing. I can’t speak for everyone in my corner of the Twittersphere, but I certainly wouldn’t want to be accused of false advertising.

It did get me thinking, though, about how we over-inflate ourselves in these settings to look bigger than we are… like a territorial cat with its fur on end. Does our present condition and status look so mean and small compared to the other occupants of Twitter’s celebrity-studded sphere that we are coerced into defining ourselves by some distant pipe-dream? Surely, if you get to doing that, you have to ask… what’s so wrong with being who you are and doing what you do?

If you don’t like it – please, please, get working towards changing it. Life’s too short not to. At least then, when you tell the world about where you are, you can also tell us about the journey you are on and the destination you are heading for. Tell me who you are, and who you are becoming; but don’t tell me you’re an empty wish – someone you’re not.