Little box of history

When I first set up this poor neglected blog, I said that I’d mainly created it so that I had somewhere to talk about my family history research. It’s taken a while for me to make a start, but here it is.

I started researching about 3 years ago when Dad asked me to find out more about his family and gave me a big box containing photographs, two beautiful old photo albums, a few receipts and bits of paper. Mum and Dad knew who some of the faces looking at me from the photographs were, as did I, but many of the faces were unknown yet with a hint of familiarity. I think I was hooked right then. 

Dad knew quite a bit about his grandparents and the wider family around that generation, as well as snippets about his great-grandparents, but very little before then. We did know that my great-grandfather’s branch of the family had a long history in Warwickshire but that my great-grandmother came from Soham, Cambridgeshire. My great-grandfather, Arthur, had been apprenticed as a butcher in Erdington, now a suburb of Birmingham. He started his own butcher’s business in Coventry and ultimately owned a large slaughterhouse that was taken over by his eldest son, my grandfather. The business was owned by the family until my grandfather died (sadly before I was born). The picture on the left is my great-grandfather as a butcher – perhaps taken to commemorate him becoming a master butcher (I don’t know if there’s any significance in exactly what he’s wearing); the picture on the right is my grandfather, mimicking the same pose.

  

This seems to be a theme as my box contains almost identical pictures of Arthur and his eldest son wielding a riding crop. I can’t decide if this is sweet or a bit vain – or maybe it was just the done thing back then.

 

I digress… Not knowing much about family history, I made a start digging around on the internet. I fairly quickly found a census record for Arthur as a journeyman butcher in Erdington in 1901, as expected, which was a nice start! I then found a birth record for him in the late 1870s in Foleshill, then a village north of Coventry, and a census record for 1881, when he was living in Birmingham, with his older brother, their mother, her sister and the sister’s husband. His uncle was head of the household and Arthur’s father was nowhere to be seen. In 1891, he was still living in Birmingham with his older brother, his aunt and her husband. Further hunting led to the sad discovery that his mother had died of tuberculosis at the age of 28, when he was just 3 and his brother 5. His father still seemed to be back in Coventry. I assume that Arthur’s mother went to live with her sister when she became ill and that the children went with her. I was surprised that they hadn’t returned to their father when their mother died, but I guess that wasn’t feasible back then.

It was while apprenticed in Birmingham that Arthur must have met my great-grandmother Nell, who had moved all the way from Soham in Cambridgeshire to be a domestic servant at a big house in Edgbaston, according to the 1901 census. Later that year, Arthur must have become a master butcher, as they married in Coventry after he bought the premises that would be their home and place of work for the next few years. By 1911, they had two of their four children and enough money to employ a domestic servant of their own, but Nell continued to work as a bookkeeper. My Dad recalls her saying “I don’t need a lot of money, but it is nice to be where it is.” He always speaks of her with great affection, and the hint of a smile in the photo below makes me wish I’d had the chance to meet her (and I do also love the old cars in the background!). The picture on the right is, I think, Nell as a rather stern-looking child back in Soham.

  

My grandfather ended up a successful businessman, with his small butcher’s shop in Foleshill growing to become, so I’m told, the largest abattoir in the West Midlands at that time. Quite an achievement for a child whose mother died so young and whose father seemed essentially to abandon Arthur and his brother to their deceased mother’s family. I discovered in a pamphlet about Foleshill that the sounds that emanated from his shop ultimately led Christopher Cash to invent the Cash captive bolt pistols that meant animals could be stunned before slaughter. Unpleasant reading for the animal-loving vegetarian that I am! When Dad talks about Arthur, he comes across as a tough, strict and stern but likeable man; I suspect I’d have been a bit in awe of him had I met him.

My Dad’s simple request for me to research his family has given me a new hobby that has developed into a bit of an obsession. Dad’s pretty much lost interest in it now, and Mum has never been that bothered, so my continued efforts are purely to satisfy my own curiosity. There’s always something to do, and the trouble is often deciding what to tackle next. The break I’ve been forced to take over the last year while I’ve been ill has probably done my tree some good. My mission now, with a fresh eye and renewed enthusiasm, is not to find even more names to add to the hundreds already in my tree, but to find out more about how these people in my family actually lived and perhaps to put a few more names to the faces in the hundreds of photos that Dad has entrusted into my care.

Not colitis after all

Ok, so the title’s not entirely true. I do still have colitis – that’s never going anywhere, unfortunately – but, it now seems that the last eight months of ill health have been the result of fibromyalgia not a colitis flare. 

The diagnosis of fibromyalgia, which was mentioned a few times by my gastroenterologist and also at a first rheumatology appointment, was confirmed by my rheumatologist a week ago today. I knew it was coming, because the rheumatologist had already called to reassure that my spinal MRI was clear and that there was no suggestion of inflammatory arthritis in my blood test results. Even so it was a shock to hear it confirmed. I ended up shedding tears of relief that the symptoms I’d been experiencing since February finally had an explanation, because I knew that my – and everyone else’s – initial assumption that they were colitic in origin was not correct. In fact, my bowel has, throughout, been very well behaved and it just didn’t *feel* like colitis. 

I’ve not really had time to think about it much, because work has been relentless, and I’m still not sure how I feel about the diagnosis. The other options were something I knew how to deal with…autoimmune disorders, like my colitis, with effective treatments that I’ve regularly written about in my work over the last four or five years. Ok so the inflammatory arthritides have long-lasting effects and complications, but they’re ‘solid’ diagnoses. Some of the treatments can also be used to treat colitis – two for the price of one, as it were.

Fibromyalgia, on the other hand, is a wishy washy diagnosis. The name means pain in the muscle and connective tissue, but why it develops isn’t really understood. It produces a vast range of seemingly unrelated symptoms, which wax and wane for no apparent reason. I am positive for at least 12 of the 18 tender points used to diagnose it, but I’m actually feeling the best I have for some time, so I also feel a bit of a fibromyalgia fraud at the moment. Which also perhaps explains why it hasn’t properly sunk in yet. My doctor has advised that I increase my physical activity and exercise ‘aggressively’. I have to take measures to improve my sleep ‘quality’, as there’s a belief that lack of restorative deep sleep may be involved. A low-dose antidepressant may be an option to help with pain and inevitable depression. But it’s all very ‘vague’!

The other frustration is the possibility that the increase in azathioprine dose, multiple courses of evil steroids and a new-to-me drug – sulfasalazine – that was introduced to help my joint problems but makes me nauseous may have been unnecessary. Which also means that the weekly blood tests to monitor my erratic liver function may also have been unnecessary. I’ll only have the answer to this when I next see my gastroenterologist.

In the meantime though, I have been very touched by the good wishes of friends – with and without fibro – and the offers of support and advice from previously unknown people with fibro who have seen my tweets about the diagnosis. Thank you all x

Law gone mad

On 4 May this year, my 75-year-old Mum was confronted by an angry man loudly complaining that she had parked in a disabled space. She has a legitimate blue badge due to a combination of health issues and so was quite entitled to park her car where she did. She was so distressed and embarrassed by the situation that she rang me in floods of tears. I was fuming, so I  tweeted, as I tend to do, about the situation. In one of my tweets I said “I’d bloody well have made him disabled if I’d been there.” If the #twitterjoketrial is anything to go by, I’m lucky someone wasn’t trawling the web looking for such threats and that I wasn’t arrested and taken to court for threatening behaviour. Shame on the law, which seems to have lost all common sense.

Sonisphere

As I mentioned in my last post, I stopped going to gigs regularly for about nine years from 1994, so I hadn’t been to a music festival since Reading in ’94 or possibly ’95. Last year I noticed a lot of noise on the web about the launch of a new touring ‘heavy rock’ festival called Sonisphere. I’ve never been to a metal festival before – I’d always felt a bit intimidated by the prospect and suspected I’d be a fish out of water - but the line up, which included Linkin Park (a favourite band of mine from the last few years), NIN and Metallica (who I hadn’t seen since ’93), tempted me. One of my NMA friends – a huge Metallica fan – and I decided to take a risk and bought weekend camping tickets for the festival’s debut. It proved to be a good decision. We had a whale of a time (the family camping tickets were an early morning mistake on my part last year but proved to be a welcome reprieve from the madness and bedlam in the general camping), and the music was awesome. I danced and sang my heart out during the Linkin Park set on the Saturday night, although I felt a bit let down by the bizarre debut of the lead singer’s new band Dead by Sunrise during the encore, which didn’t go down well with the crowd and killed the building intensity of the performance. (Mind you, the ploy worked: I bought the album and went to see them in February this year.) Metallica surprised me, as they were nowhere near as good as the previous times I’d seen them…in my humble opinion. The NIN set was a massive disappointment; it was nothing like the amazing performances at the MEN and O2 arenas earlier in the year – the signature tracks were missing and the whole set felt like a funeral – such a shame given it was their last ever performance in the UK. On the positive side, I thoroughly enjoyed Anthrax, Avenged Sevenfold and Limp Bizkit, and I loved the novelty performance by Bjorn Again – what fun to see hardened metal fans bopping along to Dancing Queen!

We enjoyed Sonisphere 2009 so much that we’d agreed to return before we’d even left the site…and when the legendary Rammstein were announced, we persuaded another NMA friend of mine to come along too. After months of anticipation, we met at Tesco in Baldock to buy supplies for the weekend. We dropped down the A1(M) and followed the signs for Sonisphere, which took us a somewhat circuitous 20-minute route through Hitchin to the site at Knebworth. We’d only had to drive about five minutes off the motorway the previous year and had to walk about 10 minutes to the family camping. Unfortunately, this year we were parked on the other side of the arena from the family camping – a 25-minute walk of approximately one mile up and down and over rough ground, which is not ideal for someone with a heart condition and another with a chronic illness that causes fatigue and arthritis. We had to make two trips from car to campsite overall. With a break in between to put up tents and recharge batteries, it was four hours from arriving on site to the camp being set up, by which time I’d missed the Time Warp Record Attempt about which I’d been so excited. At this point, exhausted, sunburned and feeling very unwell, I burst into tears and just wanted to go home.

Some food and cold drinks lifted my spirits, and we made our way into the arena to see Gary Numan and Alice Cooper on the Saturn stage. I’ve only seen Gary Numan once before - when he joined NIN on stage at the O2 arena last year – and I enjoyed his set, which included Cars and Are ‘Friends’ Electric?, immensely. Alice Cooper was next on our list for the Friday night. He opened with School’s Out and then blasted out some tracks seemingly familiar to everyone but me. Halfway through, we tore ourselves away from the guillotines, straitjacket and other props to slip over to the Jagermeister stage for 30 minutes of Karma to Burn. They were my biggest surprise of the weekend. Virtually everyone in the modest crowd was tapping their feet and nodding their heads vigorously, including me, although I’d never heard them before. The atmosphere was electric. When the band finished their last song, we clamoured for more. “If we get in trouble for this…”, said the singer, as they launched into a Black Sabbath song. We cheered, he started singing, but nothing came out. The vocals had been cut and the band had to leave the stage. “Karma, Karma, Karma”, shouted the crowd, but to no avail, the spoilsports at the Jagermeister stage won. Disappointed, we returned back to Alice. The only Alice Cooper album I have is Trash, which I love, but sadly for me he either didn’t play anything off it or, if he did, it was while we were captivated by Karma to Burn. He ended, strangely, with School’s Out again. He was good, but, for me, he didn’t set any fires alight.

Rammstein, on the other hand, set plenty of fires alight, quite literally. I cannot begin to do justice in describing their show. There were fireworks on stage, above the stage and sent down cables from sound desk to stage. The singer, adorned in theatrical make up, sang with a glowing mouth, took complete possession of the stage and was raised high above the stage on a thin column from where he threw flames across the crowd. The keyboard player jumped in a boat that was propelled around by the raised arms of the crowd, collected a German flag and a Union Jack, and then returned to the stage to play keyboard as he walked on a treadmill. By the time Rammstein left the Apollo stage on the Saturday night, my eyes were dry because I don’t think I blinked for the hour and a half of their performance for fear of missing something. (Although, as a shortie, I should point out that I could only see the back of the tall people in front of me and occasionally the big screens and top of the stage…when they weren’t obscured by bloody flags on bloody flagpoles.) The only disappointment was that they left the stage 30 minutes before they were due to - we could have stayed there watching them for hours more. Therapy? had the daunting task of following Rammstein. They were scheduled to play Troublegum from beginning to end in the sauna-like Bohemia tent, which couldn’t possibly hold the hoardes of people trying to get in – still buzzing from Rammstein. With people rows deep outside, the power failed twice during the first track, but third time lucky the set began in earnest. We listened and danced outside the tent, before returning, via a toastie stall, to our campsite, where I reflected on the rest of the day’s highlights: Lacuna Coil, Placebo, Anthrax (although missing something from 2009), Apocalyptica and Skunk Anansie.

I was dreading Sunday, as it meant packing up and returning all our stuff to the car so we could make a quick getaway after Iron Maiden closed on the main Apollo stage. Before we faced the trek back to the car, we got up (relatively) early to see Henry Rollins Spoken Word. People were queuing to get in the Bohemia tent and we joined the surge when the ‘doors’ opened. Inside, the tent was already hot and humid despite the mid-morning start, but the discomfort was forgotten when he came on stage. He chatted for an hour – passionate, inspiring, funny, honest and intelligent. He described his travels and experiences in South Africa, his admiration for Nelson Mandela, his disdain for George W Bush and his respect for Barack Hussein Obama. He eloquently described much of what is wrong in our world and how just one person can make a difference. He’d make a good country leader.

We returned to the camping area and made the two journeys and spent four hours moving to and from the car with our stuff. The second journey was excruciating for my arthritic hands and back, and I ended up sat at the side of the pathway exhausted. My two friends, who helped me with some of my stuff, had soldiered on ahead of me, but a couple of lovely ladies took pity on me and helped me the rest of the way. Another four hours wasted moving stuff to the car and we’d missed Alice in Chains – another firm favourite of my Metallica-loving friend. By the time we’d walked back around the arena to get inside (frustratingly, the general admission gates were all along one side of the arena on the opposite side to our car park), we’d also missed the beginning of The Cult, who were on my must-see list. Too tired to go down to the front, we watched from the top of the hill. They were, as always, wonderful – a good set with a variety of tracks and the ever-favourite She Sells Sanctuary. By the time they’d finished, I’d got my energy back and Pendulum came onto the Apollo stage. The Iron Maiden fans already waiting for their idols looked a bit puzzled by the impromptu rave that sprang up around them but some entered into the spirit of things and a circle pit appeared nearby. Pendulum were undoubtedly my highlight of the weekend – after Rammstein, who were simply poles apart from everyone else.

Pendulum were followed by Iggy and the Stooges on the Saturn stage. I was underwhelmed – I don’t know why but they don’t push any of my buttons – back in 1991 at Reading Festival, I went back to my tent for a snooze while Iggy played. Then came the climax of the weekend – Iron Maiden. I’d never seen them before and, to be honest, I won’t rush to see them again. Bruce Dickinson was a great front man but the set just seemed to be similar song after similar song. They played only one song that I recognised and the venue seemed half as empty as it was when Metallica had closed the Sunday night the year before. I could quite happily have left halfway through but we stayed to the encore and then made our escape back home – to a hot shower and a comfortable mattress.

All three of us have agreed we’ll be back again next year – although we may resort to a hotel each night to avoid that walk from car park to camping.

Music and me

I want to do a couple of posts about music-related stuff, but I thought it made sense first to talk about music and me in general (apologies in advance – it wasn’t meant to be quite this long!).

I’ve been passionate about music for almost as long as I can remember. Listening not playing – the playing thing never really worked out – and I couldn’t sing in tune to save my life. I don’t recall Dad listening to much music when I was a kid, but I have vivid memories of Andy Williams when I was five or six, because Mum always played his album while she was cooking the Sunday roast. The first music in my collection (on vinyl of course) included the very sophisticated SuperWombling, Bugs Bunny Comes to London and Captain Beaky.

At the age of 11, although I was still singing along enthusiastically (but badly) to Disney tunes on eight-track and went to see Fame Live, I also loved Adam and the Ants, Haircut 100, Kajagoogoo, Blondie and Duran Duran. The first music I bought with my own money (vouchers for my 11th birthday) was XTC’s single ‘Senses Working Overtime’. My weekly pocket money always went on a copy of Smash Hits and the back-cover posters adorned the walls of my bedroom. Like kids all over the UK, I used to tape tracks I liked off Sunday night’s radio chart show.

As I got older, Tears for Fears, Big Country, U2, The Mission, The Cult, The Cure, Siouxsie and the Banshees, and Depeche Mode crept into my collection, although I still enjoyed a lot of chart music. My first proper concert was King in 1985 at Hammersmith Odeon. I was 14, so my parents drove a friend and me down there. In 1986, I saw Big Country at Wembley Arena; I saw The Cure there in 1987, as well as The Cult at Leicester de Montfort Hall. For all three, I went with a friend on organised coach trips from Cambridge; Mum picked us up outside the NatWest branch near the bus station, hiding her hair curlers under a headscarf as she waited in the car. I also went to local gigs at the Boat Race, Burleigh Arms, Guildhall and Sea Cadets’ Hall in Cambridge (the Corn Exchange wasn’t a venue back then) for Ozric Tentacles and Hawkwind and local bands like Stormed, Nutmeg and This Replica.

Life changed massively when I passed my driving test in June 1988, as I could then get myself to gigs. I’d fallen in love with All About Eve and saw them for the first time in February 1988. As soon as I could drive, I started travelling to see them in various places – and along the way discovered and consequently travelled to see Crazyhead, Balaam and the Angel, Ghost Dance, The Wonderstuff, Pop Will Eat Itself and New Model Army. I remember my first NMA gig – in Coventry in October 1988 – like it was yesterday. The more gigs I went to, the more faces I recognised, and I started to make friends of the people who followed these bands.

     

In September 1989, I went to Bristol University to read chemistry. One of the lads I’d met at Ghost Dance gigs introduced me to The Levellers during the summer holidays – not long after their first album ‘A Weapon Called The Word’ was released. This was the next major landmark for me. I played that amazing album pretty much constantly. My first Levs gig was in Peterborough in July 1990. It unexpectedly ended up as an acoustic set, as Jeremy the bass player injured himself playing football before the gig, but I was hooked. When it was announced that they’d be support for NMA’s Impurity tour in the autumn, I bought myself a season ticket and did all but the Scottish shows. I drove across Germany for the European leg of the Impurity tour in early 1991 and hopped across to Paris to see the Levs and then up to Holland to see Carter USM. Although I’d made friends at uni, I never felt more comfortable and ‘at home’ than with my following friends, and I fitted gigging and festivals in around my uni schedule (although sometimes the uni schedule lost the fight).

  

For the next two years of uni and the two years after I left, gigs were my main hobby – I could go to anything up to seven gigs a week. As well as NMA and the Levs, I followed Carter USM, Pop Will Eat Itself and EMF on tour, and I went to as many other gigs as possible – in the UK and Europe. I first saw Nirvana at the Bristol Bierkeller in 1991 – and I have an unused ticket for their gig at Brixton Academy on 4 April 1994, the day before Kurt Cobain died, which didn’t go ahead because he was missing. I was lucky enough to see Rage Against the Machine on their first full UK tour. I fell asleep through my first ever Nine Inch Nails gig at an indoor festival in Rotterdam called ‘Ein Abend in Wien’, where they played alongside Dinosaur Jr, Nirvana, Smashing Pumpkins and Jesus Jones, among others. On the subsequent two days, I saw NIN in Brussels and then Paris, where they were billed above Carter USM but under The Wonderstuff.

     

When we went to see PWEI in Ireland, we were on the last ferry to be allowed to cross the Irish Sea during a storm. The crossing was so rough that even the crew were ill, and the ground was still moving at the gig in Dublin that night. At the gig in Belfast the next evening, we chatted with the band about our horrific journey and Clint Mansell’s fear of flying. What started as a joke ended up with three friends and me swapping our four ferry tickets for the band’s four flight tickets. I boarded the flight using Graham Crabb’s ticket and we flew back in style – on a 20ish-seater plane with free champagne and canapes – before hitching from Birmingham Airport to the next gig in York. These were some of the best times of my life so far – I made some wonderful friends, many of whom remain so today, and I had some amazing experiences.

  

In late 1994, when my best gigging friend went travelling abroad and I started seeing a non-gigging bloke, I stopped going and lost touch with all of my following friends, although my love of music remained as strong as ever. Until I got back in touch with that friend again – after I had escaped from that relationship - I hadn’t realised what I’d missed during the previous nine years. As I started to go to the odd gig here and there, and caught up with old friends, suddenly a gap that I’d pretended wasn’t there started to be filled again. A couple of years ago, I decided to follow NMA again on a small tour.  I’ve lost count of the number of NMA gigs I’ve been to in total, but it’s close to 100 – still far fewer than some of my friends. I saw EMF again in 2008 (that was one hell of a gig), went to Carter USM’s reunion gigs in London and Birmingham in 2007, 2008 (with EMF) and 2009, and last year I also went to see The Cult, NIN/Jane’s Addiction, The Wonderstuff, Pixies, Depeche Mode and Blur and to Sonisphere. This year’s been a bit quiet due to my colitis, but I did go to see Prodigy/Pendulum at the Warrior Dance Festival recently and made it to two Fry’s Gigs and Sonisphere 2010 (more about these later). I couldn’t possibly go to as many gigs now as I did back in the 80s and 90s, but I’ll do as many as I can for as long as I can. Music and gigging are vital parts of my life; without them, I’m not quite the person I should be.

Life with colitis is a rollercoaster

Colitis wasn’t even supposed to be a subject of this blog, yet it’s become the topic about which I’ve posted most often and is a factor in why I’ve not posted more often on any other subject. I first wrote about it in January when I was fighting cold after cold due to the crappy immune system that is a price I pay for the benefits of my medication. I was also due for my annual check up with my gastroenterologist, which, I assumed would be the usual 10 minutes that boil down to “How are you?”, “Yes I’m fine, thanks”, “I’ll see you in a year then”. For good reasons, my consultant suggested I reduce the dose of my medicine a little, and I agreed. Oh how I wish I had a time machine to jump back to that appointment but with the benefit of hindsight. (The posts about what happened next are http://wp.me/pKSly-j and http://wp.me/pKSly-v).

Anyway, my last colitis-related post was written during a high point of the first few months of this year. I’d increased my medicine to its original dose, taken some time off work, slept a lot and did little else. The result was that I was feeling as close to ‘normal’ as I ever feel, and I was pretty convinced my colitis had retreated back into its cave. I didn’t by any stretch of my imagination imagine I was back in remission, but I did think things would tick along for a while at the same pace and that remission would eventually be declared.

Sadly, it was not to be. I quickly started to feel tired again. My joints began to ache. After a weekend of housework (nothing too strenuous), my hands were so swollen and puffy that I couldn’t grip anything properly. I couldn’t even cross my fingers to hope that this wouldn’t last long. Worst of all for me, my brain started to seize up again and I was starting to struggle with work again. I battled on for a week or so, desperately trying to deny that I had a problem, because I knew that steroids were the next step. I know I’ve mentioned this before, but I hate steroids.

About a month ago, it all got too much again. Ant was colouring my hair and unintentionally said something that upset me. It was nothing major but it was enough. As I sat on the kitchen chair with a curtain of hair draped across my face ready for the henna paste to be applied, tears streamed down my face. Once the dyeing session was over and my hair was wrapped up in cling film (so attractive!), I ended up in the bathroom sobbing, instead of watching the F1 as planned. Ant thought I was having a ‘colitis moment’ and, for a while, didn’t realise the state I was in. He eventually coerced me out of the bathroom, and, after a lot of tears, tissues and talking, he persuaded me to make an appointment to see our GP.

I was determined not to break down at the surgery, and I did very well until I was sat in front of the doctor, at which point the floodgates opened. She looked somewhat bewildered as she handed over a tissue and listened to me babbling. She understood my reluctance to take the steroids but persuaded me to take a short course that could be rapidly tapered down (you can’t just stop taking high-dose steroid tablets – their presence reduces the body’s production of its own vital steroids, so you have to reduce the dose slowly to give the body time to start making them for itself again). I took 6 tablets of 5 mg prednisolone a day for 6 days and then reduced the dose by 1 tablet every 3 days. In total I had to take them for three weeks. (I’ve also been taking aloe vera juice and probiotics, which are reputed to help, as well as being a bit more strict with my incredibly unhealthy low-fibre diet.)

As expected, I felt great while I was taking the steroids. I had lots of energy and felt like doing stuff I hadn’t had any interest in for weeks. I was cooking, reading, tidying the house and doing some family history, and I started to say yes to offers of work again. But it’s a bit like being drunk or taking antidepressants: you feel wonderful, but in your heart you know that it’s not real. The first few days I was positively buzzing. I couldn’t sleep. When I did get to sleep, I woke early and even got out of bed early (very unlike me!). One night I considered booting up my PC and doing some work at 2am. My appetite increased rapidly, approaching that of a small horse, and I have, inevitably, put weight on as a result: about 11 lb [corrected from 17 lb due to brain not working properly] in three weeks. It looks like I may be adding another size to my wardrobe, which has as many sizes as a good high street store. I’ve developed steroid skin, particularly on my hands and face, where it’s dry, papery, shiny and red. My face has also puffed up, giving me the characteristic side effect known as ‘moon face’. I feel horrible about myself – and I certainly don’t see me when I look in the mirror.

All of those side effects – and more – are almost worth it when you’re feeling better, but there’s always a risk that your immune system will kick in again and the disease will have a resurgence when the prednisolone is stopped. So, despite feeling better and looking forward to stopping the steroids, I was also fearful that the disease might re-flare after that last dose. And it has. I took my last tablet on Monday. I went to London for a meeting on Tuesday and hoped that the tiredness that followed the day after was just the result of the long day (12 hours from leaving home to getting back). It’s now Sunday and I’m feeling rubbish. I’ve struggled to get out of bed every day since Tuesday, despite generally sleeping well, my joints are starting to hurt and my bowel is playing up again. So now I have the side effects of steroids but none of the benefits, and I face the prospect of another course after I see my GP again tomorrow morning. I know I could be in a much worse position in many different ways, but I make no apology for the fact that, at the moment, I’m feeling a bit sorry for myself.

A cause close to my heart

This time last week I was getting ready for a trip down to London for the first Fry’s Gig ‘Unsigned Mind #1′ (www.frysgig.com) in aid of the mental health charity Mind (www.mind.org.uk/). After an uneventful journey on train and tube, I walked from Angel tube station up to the Old Queen’s Head, where the gig was to be held, and reflected back on one particular aspect of my life.

I was about to walk into a pub, on my own, having met not a single person who was going to be at the gig in real life and ‘knowing’ just a few of the attendees through tweets exchanged on Twitter. This was a far cry from my teenage years, when I couldn’t even walk into my local haunts in Cambridge to meet my friends. Back then, my Dad would drop me off outside and I would wait until one of my friends came out to walk me inside. Walking in on my own, despite the fact I knew pretty much everyone in there, simply wasn’t an option. Why? Because I’d been bullied at school.  

I was first picked on in my first year at a private girls’ school in Nottingham. I was targeted by one particular girl – who’d been a ‘friend’ of mine throughout the junior section of the school – although it was a while until we discovered this and I never really understood why. It was silly little things – like my pencil case disappearing from my desk and eventually reappearing days later covered in blotches of ink and unpleasant words – but it was incredibly hurtful and confusing for a 10-year-old girl. Dad changed jobs, we moved away and for the next year, which involved two different schools – another private girls’ school and then a mixed comprehensive – I had no more problems.  

After another change in Dad’s job when I was about 13, we moved near Cambridge, where I started at the school I would ultimately be at until I went to university. I joined in the third year and by then the girls (it was another private girls’ school) had already formed firm friendships and split into distinct groups. With my Midlands accent, pierced ears and dyed hair (my mum was wonderfully liberal), I was a prime target. Very soon it became apparent that I wasn’t going to have an easy ride. There was never anything physical – except the small balls of chewing gum flicked into my long hair during assembly – but whispers, verbal digs and harassment in the classroom during registration, during assembly and during breaks. I can’t remember exact details now – perhaps I’ve blanked it out, perhaps it’s just so unimportant to me now in the great scheme of things – but back then it took over my life to the point where life didn’t seem worthwhile.  

The bullying was all done very carefully, so that it wasn’t obvious to anyone else. In fact, when I went back to my 20-year reunion last year, some of my close schoolfriends of that time hadn’t realised what I went through because I’d hidden it so well. Others didn’t realise because they were going through something similar themselves and were fighting their own battles. I started to make myself sick in the mornings so I didn’t have to go to school. Mum and Dad realised something was seriously wrong and eventually dragged out of me what was happening. They went to see my headmistress, who wasn’t interested in doing anything. So for nearly two years I had to put up with it – and all of my confidence and self-esteem were sucked out of me. Every morning I registered in the classroom adjoining mine, where a couple of the ‘bad girls’ looked out for me, because I couldn’t face going into my own classroom. Then one day towards the end of the fourth year, my form tutor overhead something being said. She took the three girls involved into a soundproof music room for a while. From that day onwards nothing ever happened again. I have no idea what she said, but she was my saviour.  

I’ve come on an awful lot since then. In fact, I hardly recognise myself as that timid, frightened, depressed and desperate young girl. Many things and people in my life since then have helped me to recover my confidence and turn me into the person I am today. Recovering from that period of bullying has probably made me stronger than I ever would have been without, but I would much rather I hadn’t had to go through it in the first place. If only my headmistress had taken action sooner. If only there had been an organisation my parents and I could have turned to for help. There wasn’t back then, but there is now. That organisation is Bullying UK. They’re a charity who receive no government funding. They help 500,000 people a year going through what I went through – and worse – for just £50,000. But that vital help is at risk because donations are so low at the moment. If you can spare anything at all, please make a donation via www.justgiving.com/savebullyinguk to make sure they can continue to help people.

A quick trip to Norfolk

My parents have just bought a new static caravan as they only ever visit the same caravan park near Sheringham in Norfolk and used to leave the tourer there all summer. They picked the keys up yesterday, so we took Bertie, my New Beetle, on the 90-mile drive up there. We were really impressed with the position of the van and the van itself, which has two bedrooms, a fully fitted kitchen, a bathroom (complete with bath!), a dining area and an enormous lounge with full-length windows that let the light flood in. We’ve only stayed in the tourer once, because it was a pain having to fill up the water and empty the chemical loo, but the static has water and sewage plumbed in, so we’re more likely to use it for long weekends – if we can prise them out of it.

As the water was off yesterday due to work on a brand new toilet block on site, we couldn’t have a cup of tea to celebrate, so we ventured into Cromer, where my parents had booked a table at their favourite fish and chip restaurant. We briefly wandered around town looking for a tea shop to kill some time before our booking but found not a single one open.

We passed the quite beautiful parish church – I could only fit the steeple into my camera lens given the narrow streets.

We briefly looked across the crashing waves of the sea, bracing ourselves against the biting wind.

And we admired the terraced houses along the top of the cliff.

Finally, we headed to the restaurant where my parents and Ant enjoyed an apparently delicious fish-and-chip supper. I, on the other hand, had to settle for cardboard and tomato sauce with a sprinkling of unmelted cheese, which was pretending to be a pizza, as everything else on the menu, including the veggie burger, was cooked in beef dripping. I desperately need to seek food advice from a twitterfriend in Cromer, as last time we ate there I had a flavourless curry and Ant’s made him ill!

With supper complete and goodbyes said, we made the hour-and-a half trip home. Aside from the food and a few idiot drivers on the way home, all in all it was a lovely half-day out.

A Spring peek into the garden

My support services were needed in the garden today while Ant put up a new bit of trellis so our Clematis montana will grow over the kitchen window. I felt a bit like a surgical nurse as I handed over the appropriate tools on request. It is, so I’m told, my fault that it’s not quite straight, but you’ll never know once it’s covered in leaves and hundreds of delicate pink flowers.

We made the most of the beautiful sunny day to wander around the garden and see what plants we’ve lost over winter. Sadly, a fair few haven’t survived the snow and the unusually prolonged icy spells, and it remains to be seen whether a few more will return again this year. None of my agapanthus plants look very healthy at the moment and I fear that could be the end of them. I hope not as they’re one of my favourites. The remaining head of a flower on a clematis that grows up an obelisk made me smile, as I’ve watched it since it was a beautiful flower, then a fresh seed head and now seemingly a ball of fluff.

Oct 2009  Mar 2010  

The crocuses are looking stunning at the moment – we’re going to try to plant some more for next year. Ant also assessed which of our bonsai trees are likely to need repotting this year. Not wanting to wish the year away but I can’t wait for autumn when my bonsai crab apple will be covered in dinky little red apples after a year resting without fruit.

Apart from pigeons, the garden’s been missing birds since I moved in back in 2003 – mainly because it’s a new(ish) estate and none of the other surrounding houses really have anything other than lawns and kids’ toys. Over the last couple of years we’ve enticed in a very noisy pair of blackbirds and the pond has attracted a heron. We’ve had a breakthrough this year though, with the hard cold winter seeing an influx of birds taking advantage of our feeders and water bowl. We’ve had starlings, robins, sparrows and a variety of tits and finches. And we seem to have acquired a pair of doves, who sit on top of the pergola under a cotoneaster. Today, a chaffinch sat amidst the cherry blossom as we put up the trellis, seemingly oblivious to the fact we were there.

There really wasn’t a cloud in the sky, and apart from the odd plane passing overhead, there was hardly a sound to be heard. This must be one of my favourite times to be out in the garden. It might still be cold when you’re out of the sun, but everyone else is tucked up warm in their houses, and with minimal traffic noise because it’s Sunday, the garden seems so peaceful. Spring has definitely got its foot in the door though, so I’m going to try to make the most of the peace and quiet before summer arrives and it’s warm enough for the kids to come out to play.

What a difference 10 days make

I was at a pretty low ebb when I made my last post. As is often the case, things got worse before they got better.

A couple of days later, I felt so unwell that I began to panic. I couldn’t believe that such a tiny reduction in the dose of my azathioprine – from 100 mg to 75 mg – could have such a major impact on my colitis. As I lay on the sofa with every joint screaming and shuffled around the house like a really old woman, I couldn’t imagine that I’d ever feel better again, and I cried my eyes out. 

My head seemed to be full of cotton wool not brain cells and, after much internal debate, I decided to send back the bit of work that was giving me so much grief and to cancel another scheduled job. It was better to give my client the chance to get the jobs done properly first time around than for me to make a mess of them so that they missed their deadlines trying to get them up to scratch. I felt awful to be letting my client down but I knew it was best for them and best for me. Once I’d made that phone call, it felt like a huge weight was lifted from my shoulders, and I was able to relax into illness without the added stress of work looming over me. I took things steady and didn’t overdo things when I felt good for a couple of hours.

It’s paid off. Ten days later, I’m delighted to be on the mend. I baked some bread yesterday (with the help of my breadmaker) and that’s a sure sign that things are returning to my normal. I’m getting my brain used to thinking again and I’m hoping that I can do close to a full week of work this coming week.

I can hardly believe the difference in such a short space of time, but I’m still taking it gently. I’ve cancelled my plans to do the whole New Model Army Spring tour – I think it would be too much too soon – and I’m not buying any new gig tickets or making any major plans for the next few months. Better to take each day as it comes.

It is wonderful to be in remission from a chronic disease, but it lulls you into a false sense of security. Your brain fools you, making you believe that the condition is under your control. In reality, the disease is still in control of you – it’s just taking a rest and waiting in the wings to pounce. Hopefully it’ll be another five years until my colitis is strong enough to make another almost successful takeover bid.