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.

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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.

The price of upsetting the status quo

I went to see my gastroenterologist for my annual clinic review at the beginning of January. Having been on azathioprine for some years now, and with the drug’s long-term side-effects in mind, he wanted to see if we could taper my dose down a little, so that I’m on the lowest dose that will control my symptoms. It’s been a long time since I’ve had any problems with my colitis, so I was pretty confident about reducing the dose by just one tablet every other day and started implementing the new dose regimen that very night.

Fast forward to one month later. It’s the first week in February and I’m off to Madrid to work at a conference for one of my regular clients. I’m out there from early Thursday morning until midnight on Saturday and it’s busy – very busy – seven hours sleep in three days and working the rest of the time. Not hard physical work, but tiring all the same. When I get back I’m pretty exhausted, but nothing you probably wouldn’t expect after such a long weekend.

I give myself Sunday and Monday off and write up a meeting report on Tuesday. New work from the same client arrives on Wednesday – I’m to write a formulary pack for a drug. I’ve worked on both the drug and other formulary packs before, so it shouldn’t be too challenging. Yet I sit at my desk, listlessly moving my mouse around and looking at the piles of resources and information that I’m supposed to be weaving into a justification of the benefits and costs of this product. Just two weeks ago, I would have whipped this background material into a coherent document without too much effort but now you might as well be asking me to run a marathon.

During the week, I have a few moments of utter exhaustion, almost falling asleep at my desk. Alarm bells are beginning to ring, but I tell myself it’s the last remnants of tiredness from the trip to Spain. By Friday, I’m mentally and physically exhausted. Hot spells, cold spells, nausea, joint pain and dizziness are haunting me. I crawl into my bed at 2pm Friday, realising that the chances of me writing anything worthwhile are zero – I tell myself I’ll work over the weekend. I’m still hoping that I’m just overtired from the trip to Madrid – although the logical side of my brain is telling me it is more than that.

I rallied around a little on Saturday, feeling well enough to drive into town to get a Valentine’s card for my husband and attend an optician’s appointment. In the evening we go to an old schoolfriend’s concert and the aftershow party, and I’m still feeling ok. By Sunday morning, though, I’m exhausted again. My joints are aching and swollen – hips, neck, knees, shoulders – and I keep having spells of lightheadedness and nausea. Despite the overwhelming tiredness, I struggle to sleep, unable to find a comfortable position in bed.

The only sensible conclusion now is that I’m having a flare up of my colitis, although my bowel itself is generally behaving itself. I’ve upped my dose to two tablets a day again, but it will no doubt be a couple of weeks before the full effects kick in, so I’m waiting on a call from my consultant for advice.

Today is my 39th birthday – but the way my body is feeling, it might as well be my 99th.

The colds of winter

One thing I didn’t mention as a potential subject for my blog was a condition called colitis. It’s an autoimmune inflammatory disorder that causes ulcers in the bowel. Along with Crohn’s disease, it is an inflammatory bowel disease (IBD). In addition to the predictable grim symptoms, it can have effects and complications throughout the body, including tiredness, arthritis and skin problems.

I was diagnosed with colitis eight years ago after nine months of being very unwell. Fortunately I was not ill enough to be hospitalised, but the symptoms left me feeling unbelievably dreadful and seriously disrupted my everyday life. I soldiered on for months – scared of what was wrong and somewhat embarrassed about talking to my doctor – until I hardly dare leave the house.

My GP sent me off to the hospital, where I underwent a variety of tests, which confirmed the diagnosis. After trying a few different bowel-targeted drugs and the devil’s own medicine – steroids – my gastroenterologist prescribed me a drug called azathioprine. It was originally used in patients who have transplants to stop the body’s immune system rejecting the graft but it also works well in some patients with autoimmune diseases.

Within weeks I had relief from my symptoms and started to feel like a human being again. Colitis is not curable medically (though surgery can cure it) but I seem to be in remission. It took a while, I’ve had a few hiccups along the way and I have to follow a low-fibre diet to control the symptoms of the colitis as well as my irritable bowel syndrome. On the whole though, my life is pretty much back to normal. I love my azathioprine and would fight anyone who tried to stop me taking it, but it’s not without its downsides.

Azathioprine reduces the production of white blood cells – the cells of the immune system that fight infection. Because of this, I have the seasonal flu jab every year and this year the swine flu jab too. Azathioprine can also cause liver damage. I have blood tests every three months to check my white blood cells aren’t dangerously depleted and that my liver is working properly. In the long term, azathioprine could increase my risk of some cancers – though colitis itself increases my risk of bowel cancer.

But it’s the effect on my immune system that provoked this post. Last night I developed early symptoms of my fourth cold this winter. I only stopped croaking from a throat infection a couple of days ago. I’d developed that after a night out in London in mid December. The week before, I had finally shaken off the symptoms of another throat infection that started in mid November – after a night out in London. And so the pattern will continue until spring…when my hayfever takes over.

Last night, bunged up, red nosed, frustrated and tired of almost constantly fighting coughs/colds/throat infections, I wondered whether it is really worth taking azathioprine. Then I thought back to the days *before* and I knew that when I see my gastroenterologist on Wednesday for my annual check up, I’ll ask him for another year with my wonderful drug.

Nothing to say

So here I am with a new shiny blog to play with and absolutely no idea what to say. Hopefully it’ll get easier as time goes on. I mean, I felt a bit daft when I started tweeting and there’s pretty much no stopping me adding my twopenneth on Twitter now.

I’d originally planned to write about my family history research and what I’ve discovered, but my mum has recently announced that she doesn’t think her dad would like me sharing his life with the world (or even one of my cousins – another of his granddaughters – for that matter). This has flummoxed me a bit, especially as I’d spent a couple of days writing a piece about the little we know of his life. In any case, not wanting to upset my mum, I’ve saved it on my PC and will see if she changes her mind.

In the meantime though, it seemed like a good idea to set up a blog while I’m not busy working, so I’ll have to talk just about my Dad’s side and other stuff. The chances are that will involve a mixture of my thoughts about music, books, cats, VWs and anything that catches my attention in a good or bad way.

Well, no surprise there then, I started with nothing to say and have managed four paragraphs. I’ll leave my first post there…before it becomes an essay.