While I think of it, you can now find me on Twitter.com.  Either follow this link or search for Meelzebub.  Haven’t yet decided whether to install a Twitter widget for this WordPress site yet, but that’s where you can find me for now.

In all, it’s been quite a couple of weeks here.  Yes, life is always busy, but this has been one of those rare times when busy didn’t really come into it.  Thanks to the infection I ended up with after the gastroscopy, I’ve lost a sizeable chunk of the last fortnight being ill.  While I can work through most things, even I can’t function properly with ears and sinuses causing me to lose my balance and making me nauseous just for moving my head.

Thankfully, I have some lovely clients who’ve been very understanding, and with Mum coming down to help out with H for a few days we managed to get through the worst of it.  While S was fantastic about helping with things like getting H to and from pre-school and sorting out meals for him, it was one hell of a workload for him to have to take on… not least because he ended up with concussion last Saturday doing some work in one of the spaces and has not really been feeling quite right ever since.  Yes, I know, what a pair

Throughout this week we’ve been playing a game of will-she-won’t-she about this afternoon, which was when our group, the Gemstones, was due to be performing a showcase at the Cavendish Arms in Stockwell.  Still too ill on Thursday to sing in rehearsals (or anywhere else for that matter, not even in the bath) and unable to make the final rehearsal yesterday afternoon as my voice was still rough, it wasn’t a foregone conclusion that I’d make it.  Thankfully, the antibiotics have been doing their job and I was able to make it to the gig after all.  While I had some worries about my voice making it through the whole set, the whole thing went without a hitch.  The audience responded well, our musical director was happy and I think we’ve built our confidence in preparation for the gigs we have coming up next month.

The only cloud in sight is the knowledge that I will have to head down to A&E in the next day or so, as I fell and caught the index finger of my right hand.  Obviously I ignored it at the time, but with it still painful and much more swollen, I need to check that it’s not broken or, if it is, that it sets straight.  The last thing I can do with is losing mobility in that finger: since I’m right-handed it’s already affecting my ability to chop things, write, type or even get H dressed on occasion, so it’s off to the docs with me.  Again.  

But, in all, life is good.  I’m feeling human again, the gluten-free lifestyle is starting to make a difference, the gig went well and I have a good week’s work ahead of me.  Knackered I may be, but I know there are plenty more good things out there to look forward to.

All quiet on this front, quite literally.  The bruising has turned into an infection which had me off-balance and losing my voice.  Finally got a doc to give me some antibiotics so am hopefully on the mend again now.

More when I’ve got my head screwed back on again.

I am so relieved.  While Monday wasn’t exactly my idea of fun, I’m hoping it was worth doing.  In fact, it had better be, because they pulled the damn tube out so roughly I’ve had a sore throat ever since, which now seems to have become infected: enough to wake me up this morning, anyway, which is no mean feat through the mirtazipine and tramadol I took before bed last night.

Anyway, in the absence of any response from my gastro consultant, I’ve weighed up the information and decided to go gluten-free.  I can’t think of another test they can perform that would require me to eat gluten and I’m so sick of being ill it was no contest.  Had a big pasta blowout with H and S on Monday night, but since Tuesday morning I’ve been gluten-free.

Does this do any good?  Well, actually, yes.  For one thing, I’m no longer as bloated as I was.  Fat I may be, but I was so bloated I looked positively pregnant.  Now my boobs stick out further than my stomach again.  And while, from past experience, it will take a while for the effects to completely go, it’s caused a reduction in the other gastro symptoms, too.  

Of course, the process isn’t yet completely over as I still have to wait for the biopsy results.  All I can hope is that they show conclusively that I have coeliac disease, or I won’t be able to get the gluten-free products on prescription, despite the obvious therapeutic benefits.  I realise it sounds weird to want a diagnosis of coeliac, but it really would be so nice just to have the answer already.

Two hours to go before the gastroscopy/colonoscopy and I’m getting seriously nervous.  Which is daft when you consider I’ve had both procedures before.  In fact, I’ve never before been sedated for a gastroscopy, so it should be easier this time.  So why am I so bloody twitchy about it all?

H is due into pre-school this afternoon: I’ll be dropping him off on my way to the hospital, since it’s just 5 minutes away from there.  And S will pick him up again at the end of the session on his way to collect me, so nothing to worry about on that front.

And, let’s be straight, I’ve been waiting for this for quite some time now, as it’s the only way we’re going to get a clear answer about what’s wrong with me.  And I do want that answer, I really do.

What I’m most scared of, I think, is the idea that we may not get an answer.  I don’t know how much longer I can go on without some kind of diagnosis beyond the accurate, if not very helpful, “well, we know there’s something wrong with you”.  I don’t want to be the poster girl for some mystery gastric condition.  After 15 years what I really want is to know what the hell is wrong with me.  I’d like to know what it’s like to leave the house and not wonder where the nearest toilet will be.  On Saturday, I’d have liked to eat some breakfast before doing our stint for Marie Curie, but I didn’t dare because I had no idea where the closest loo was, and also didn’t want to run the risk of having to run off in the middle of our set.

If you’ve never suffered anything like this, the whole idea of life like this must be quite odd.  But when you’ve had diaorrhea for 15 years, 7-25 times a day, depending on how well it’s going, this is how life is.  The only thing that has ever helped is going gluten-free, which is the biggest clue we have as to what’s wrong.

Since last October I have been making sure I get enough gluten in my diet to give me a positive blood test, should I be one of the llucky ones who do show up on a blood test.  I’m not.  But I have carried on eating the gluten because the only way to get a diagnosis is for there to be sufficient damage to my gut when they stick the tube down my throat today.  I’m just hoping I’ve eaten enough gluten for it to show.  I’ll be royally pissed off if there’s nothing there to see, having gone through hell over the last 6 months.

Arguably, a diagnosis is not all that important, since we already know the way to cure me is to cut gluten out of my diet.  Both S and my psychiatrist are desperate for me to get off the gluten, because we know it’s causing problems with my depression.  But if I do have coeliac disease, the diagnosis is actually very important.  For one thing, I’ve had it for some time, which means I’ll need a bone density scan to check on the effects of calcium malbsorption.  For another, I’ll be able to get hold of gluten-free foods on prescription, which is worthwhile considering the cost of the stuff in the supermarket and the fact that, should we move up north, availability of such foods may be limited.

Then there’s the fact that we may want to give H a sibling, and my history of recurrent miscarriage means that will be difficult… so a diagnosis of coeliac disease will mean getting help sooner rather than later, which is not to be sniffed at when you’re already 37 and know your chances of getting pregnant are slimmer by the year.

And finally, it’s a whole lot easier to tell friends and family you have coeliac disease than to try and explain that a mere intolerance should be treated in the same way.  I’ve had too many people suggest that just a bit of gluten won’t do me any harm when I was on the exclusion diet, that I know the difference a positive diagnosis will make on that front, too.  It doesn’t matter that my future is gluten-free, whatever the diagnosis proves to be.  I still have to function beyond the confines of my own home, and that’s easier if I can simply give people a label: it seems it’s the only thing some people will either accept or understand.

Anyway, time to get H ready for pre-school, and then we’re off.  Wish me luck.

As friends and family will know, I’ve been going through seemingly interminable tests and examinations in a bid to work out what on earth has been wrong with my gut for the last decade and a half.  I’ve had the nice little coverall of IBS applied for most of that period, and I have pushed every five or so years to get another referral to a consultant who might have a new take on the problem.  Medical science does, after all, advance, and I’m ever hopeful that I will not have to live the rest of my life with these unpleasant symptoms.

So a couple of years back, in 2007, I had one of my periodic efforts to get the situation looked into once again.  I was referred to St Bart’s and the lovely doctor who saw me confirmed that there had been some advances and she was hopeful they could at least try and nail things for me this time.  Since the other reason for me trying to sort things out was a desire to lose weight, which is difficult to do healthily when fibre makes your gut go nuts, we also agreed to a dietician consult after all the tests were through.

Fantastic, thought I, and cheerfully attended outpatient appointments for a colonoscopy, a SeHCAT scan, blood tests, fecal and urine samples… you name it, we tried it.  The one test to reveal anything interesting, though, was the SeHCAT scan.  It was also the most pleasant by far, as all it involves is lying fully clothed in a scanner so they can get a baseline reading, taking a capsule, coming back a couple of hours later to take another reading, then coming back a week after that for the final reading.  Non-invasive and utterly relaxing: you’re even allowed to fall asleep if you want.

What the SeHCAT scan showed was that I had severe bile salt malabsorption.  Googling it back then didn’t really help, however, as it simply brought up lots of very vague stuff and statistical analyses.  But I duly went back to St Bart’s, was seen by a different doctor who told me that the cause of all my ills was my bile salt malabsorption, and all I needed to do was take a certain drug, cholestyramine, and all would be well.  I did think to ask what the causes of the malabsorption were, since I knew from past experience cholestyramine did nothing for me, and he mumbled something about maybe getting me tested for diabetes but that, I’m afraid, was that.  Pushing hard to make sure that the dietician referral was made, I went off and got my prescription for cholestyramine filled.  Let’s just say I still have 2 weeks’ supply of the stuff left and I probably ought to take it back to the pharmacist.

Fast forwarding on a bit, I eventually - after having to kick when they didn’t make the referral - got to see a dietician at RLH.  On her advice, I started an exclusion diet to see, first of all, whether it made a difference to my symptoms and, if it did, to work out what the triggers were.  The good news was that going on the exclusion diet really did make a difference, and I started feeling human again.  The even better news was that we managed to identify four triggers: oats, rye, wheat and barley.

Of course, at this point the alarm bells started ringing, for my dietician and for me.  It’s not uncommon for people to be intolerant to one food.  It’s somewhat less common for them to be intolerant to two foods.  But there’s only one thing that brings up a reaction to the four foods I identified as triggers: coeliac disease.

You’d have thought that, in all this time, they’d have tested me for coeliac disease.  And you’d be right.  I’ve had the bloods done for coeliac disease on several occasions and each time they’ve come back normal.  However, there is a small minority of people who don’t show positive on the blood tests, and diagnosis in those cases is often a lengthier process, largely due to inexperience of the doctors concerned.  So I trotted off to my GP and told her what we’d found, and agreed to start eating gluten again for at least 6 weeks so we could conduct blood tests under the ideal circumstances, since I’d been off the gluten for some 3-4 months by that point.

And there began the most unhealthy relationship I’ve ever had with food.  Knowing that you’re eating something that makes you ill does not make you feel good.  My depression, which had improved greatly while I was off the gluten, took a complete nosedive.  For six long weeks I ate gluten until my blood test.  Then I had to keep on eating gluten because the next step, whatever the blood test result, was going to be a gastroscopy.

Eventually, I was able to make an appointment to see a doctor about my test results, only to see the practice bully, who was utterly vile to me for daring to make an appointment with him because my normal GP was absent for 3 weeks and I needed to get thing actioned sooner than that.  Rather than carrying out what the other doctor had promised, he insisted on making a new referral for me back to St Bart’s, where they would ‘order a gastroscopy if they thought it necessary’.  Charming.  Still, hopeful that the Choose and Book system would be my friend and get me a swift appointment with the gastros, I was in for a shock.  No appointment until the middle of January this year.

And so I came to meet my current consultant, the lovely Prof Kumar.  Having had a very thorough first appointment with her, she ordered a joint gastroscopy and colonoscopy so we could see what was going on.  The colonoscopy I don’t expect to show us all that much.  The last one was fine, after all.  But the gastroscopy is a different matter entirely.

I’ve had three gastroscopies to date, but all have been in relation to gastric ulcers, which I also suffer from.  Not once have we actually checked the small intestine to see whether there was anything wrong there, but then, there was no need to investigate that if everyone thought I had IBS.  So this is make or break time.  Either the investigations will show I have coeliac disease or they won’t, but this is the closest I’m ever going to get to an answer.

What do I think the answer will be?  Well, if one looks at risk factors and other boxes to tick, here’s where we’re at:

• Documented bile salt malabsorption that doesn’t respond to cholestyramine
• Reaction to wheat, barley, rye and oats
• Irish ancestry
• Documented psoriasis
• Chronic depression
• Recurrent miscarriage

Broadly, if there’s a risk factor or indicator for coeliac disease, I seem to have it.  

But back to tomorrow.  I’m due this wonderful dual investigation at 1.30pm.  Naturally, knowing that I was supposed to be taking various laxatives and so on beforehand, I eventually got round to reading the leaflets and so on at about 5pm.  To be fair, I’ve had hideous sciatica for the last three days and hadn’t really had my mind focused on anything much beyond the pain, as I’d run out of tramadol.  It was only getting out to the out of hours GP for a prescription that allowed me to be clear-headed enough to even think about preparing for tomorrow.

So at 5pm, I learnt that I should, yesterday, only have eaten foods from a given list.  On reflection, I think I probably did only eat foods from that list, so that should be OK.  However, what I hadn’t sussed was that I was supposed to have had a breakfast from the approved list at about 7 am, nothing but clear fluids for lunch and then laxatives for afternoon tea and dinner, along with plenty of fluids.  Having only just had breakfast before reading the leaflet, this was not good news.

The rest of the problem almost certainly falls into the realms of TMI, so I’ll spare you the details.  Let’s just say that, if you’re ever in the situation of waiting for a similar investigation, make sure you dig out the notes at least a couple of days before the big day.  It’ll save you the rather unpleasant night I have ahead of me.

But it should be worth it.  I may be sedated but I should still be conscious.  And while it may sound strange to some, I think a diagnosis of coeliac disease would be a relief: I’d actually be able to treat my condition and heal.  Whatever the outcome of the investigations, gluten-free life is where I’m heading, if only because I know that’s what made me feel better for that brief period last year.  If anybody’s out there reading this tonight, keep your fingers crossed for me tomorrow.  This could be the start of a healthy new life.

…said my husband a few weeks ago.  With the recession being what it is, and his business being vulnerable as it’s not providing what most people would consider a necessity, we have to think about what we do if the worst case scenario has to come into play.  Hence Germany.

Not that Germany is exactly a bad thing if it comes to doing it.  I love the country, S has some family from there, I still have a friend from uni in Hamburg and H is young enough to pick up a new language before he starts school there, should he need to.  It could frankly be a hell of a lot worse.

It was at this point that I started wondering why he was thinking of Germany in particular - after all, France makes more sense in so many ways, not least because I’m bilingual French/English and am used to working in France.  But there was method to the madness: since I also speak German, S had idly had a nose around some property web sites and discovered that there’s a lot of cheap properties for sale in the former East Germany within an hour of Hamburg and Leipzig.  He’s found one in particular that he likes the look of and that we could buy for the princely sum of about 5,000GBP.  

The only catch we can see at this stage, having not viewed the property or been able to get surveys done etc, is that the building is listed.  But the roof looks sound, the windows seem to be intact and the house next door has had a loft conversion at some point in the last few years, so we’re hopeful the town planners are reasonable people who would prefer the property to be lived in and cared for than left vacant, unwanted and a bit of an eyesore.

So this evening I’ve started looking at what the implications of listing are for us and come across the lovely Anna’s blog.  Having had a nose through, I’m full of admiration for Anna and her husband, not least because they’ve actually gone the whole hog and applied for historical monument status.  It’s a step further than I would risk taking it, because so much depends on whether your local monuments people are practical about things, or whether they’ll insist - for example - on lime plaster with hair from a specific breed of horse or goat to match the original.  

Having started the evening with absolutely no clue about what we might be getting ourselves into, Anna’s blog has definitely made me think the plan is more do-able, so many thanks to her!  Now we just have to see what we can find out about the property and whether there is any chance of being able to see inside of it.  The owners are based here in the UK, and S found it in the listing of a past auction where it failed to sell, so it doesn’t seem to be listed with an agent in the way properties usually are in the UK.  Arguably, for no more than 5K, it almost doesn’t matter what state it’s in, but since we’d be talking about moving the whole family out there, it would be good to be able to make sure that there was running water, electricity and all that good stuff before pitching up with our cases and shiny new door keys.

The more I think about it, the more I like the idea.  The house is in a small town near a lake and a river, not more than an hour from the nearest airport for flights back to visit family, and we would own it outright, having only to pay any property taxes or local taxes on top of the asking price, then sort out whatever the German system requires in the way of income tax and social security payments.  If this is the worst case scenario…

…bring it on!

m xxx