Maybe it’s because it’s winter.  It’s been bitterly cold, the rain pissed down relentlessly all day yesterday and I’ve had to get used to the idea that the much vaunted Indian summer just ain’t gonna happen.  FFS, it’s November.  Get over it already.  I know.  Really I do.  Not that anybody has ever suggested my depression is down to SAD or anything like that.  I can be miserable in summer as well as winter.

And yet, this year, it’s hitting me harder.  I’ve been hitting Napster fairly hard as an antidote to all this.  Music has long been my therapy, and Napster is a great way to find all kinds of tracks, especially when you have fond memories of a particular song but can’t remember whether it really was good enough to justify buying the damn thing in the light of your adult critical reasoning, or whether 20 odd years have given it a quality it never earned at its composition.

So part of me has been meeting up with some old friends, in that sense.  Along with this, my battle with the Trust for appropriate treatment is allegedly reaching its close.  I say allegedly, because I was told I would hear something by, oh, last Friday.  Predictably, nothing has been seen or heard and neither I nor my advocate are any the wiser.  I hate that this has become the predictable outcome in my dealings with the Trust, but they seem determined to dump on the LRI guidelines whenever the opportunity presents itself.

As things stand, it seems you can tell a psychiatrist that you’re suicidal, safe in the knowledge that he will do no more than get his secretary to set up an appointment for one month hence to discuss which anti-depressant might be appropriate.  I wish I was making this up.

Constant throughout this, the voices and faces of friends and family.  Concern, fear, anger, yes, but most of all love, unbearable in the weight it places on me.  A love that stains my hands as I reach for the pills.  A love that binds and eviscerates.  A love my tears and pain can’t wash away.  A love that sprays red over the black and white of my state of mind.

Thank you, all of you.  You know who you are.

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.

It’s been a bit of an odd day today.  My depression hits me in strange ways.  While there are clearly some days where events occur that might well provoke my depression and bring me down, there are others where I feel utterly hopeless even though there is nothing concrete to explain it.  Yes, this may well strike some people as the very definition of depression, but when you’ve been living with the illness as long as I have, you get used to there being degrees.  To reach this level of despair without a single aggravating incident is rare for me, and thus all the more upsetting.

I’ve reached the point where I can’t even motivate myself to play a computer game, watch TV or read a book.  As S said when I told him this, it must be bad.  Which leaves the question of what I do.  There’s no point even trying to sleep.  I can’t face chocolate.  And since I don’t drink, or very little, I don’t even have alcohol as an outlet for all of this, not that it would solve much if I did.

To cap it all, I wandered out into the roof garden to get a little fresh air.  Dyson, our cat, has spent the last few days sleeping in a flower pot he shares with my favourite dahlia, which has a bloom like a miniature sunset.  My big bruiser of a tom cat is a shadow of the moggy he once was, slender and light, and curling into a smaller ball than I ever thought possible.

I’ve known for many years that he’ll not have the life expectancy of most cats, as he has cardiomyopathy and will probably keel over with a heart attack at some point.  Yes, cardiomyopathy can be treated in cats, to an extent, but last time I asked the vet it was still only treatable if the cat consented to taking a pill every day, and Dyson won’t.  There was one vet who told me I was being a wimp for not wanting to feed him pills and proceeded to demonstrate how to go about it.  After Dyson had drawn blood and spat the pill across the floor, she decided on balance that I might have a point with my quality of life arguments, and we agreed he should enjoy life to the full and then pop his clogs when his time came.

The irony of all this is that it probably won’t be a heart attack that carries him off after all.  He’s been drinking lots more than usual, and after he had an accident from being shut in one of the rooms here overnight (he very tidily used a Tesco Bag for Life) it seems pretty clear we should expect kidney disease to get him instead, as it did Octavia.  Of course, by the time you spot symptoms in a cat, it’s too late to treat… and then we’re back to the idea of trying to give him a pill a day, which we know won’t work anyway.  Well, won’t happen is probably more to the point.

I will miss my snaggle-toothed moggy when he goes, and I won’t be the only one.  Harvey is probably too young to understand, but will definitely notice his absence, and Dyson has become such a feature of the Rag Factory, comforting nervous actors awaiting audition or cosying up to people during rehearsals, that I suspect he will be very much missed.  All I can hope is that he goes quickly and as painlessly as possible.  In the meantime, he’ll get more than his usual share of tuna suppers and maybe an occasional fresh salmon steak.

Many more days like today, however, and I may well beat Dyson to it.  Some part of me envies him his short life expectancy, all the while knowing that, if it can be called lucky, that is what I have been to date with my suicide attempts.  There is something that has persistently anchored me to this life, even when I’ve tried to throw it away.  Part of it is love for S and Harvey and my family.  Part of it is a desire not to disappoint them.  Part of it the occasional thought that most people seem to think life is worth living and surely there must be some way for me to feel the same thing as everyone else.  There are so many parts to it, but there will come a day when what I have done cannot be undone.  Parvalex will not help, it will be too late for activated charcoal and I’ll say my final goodbyes to those I love, assuming they’re still talking to me by this point.

Oops, sorry.  One minute I was asking S to install Wordpress on the web server for me so I could get on and sort out the site, the next minute it was done and Wordpress had put some default content up for people to view.  Which was not quite what I had in mind, if indeed I had anything in there at all.

So it’s time to stagger forth out of the wings and hope that nobody noticed the unsteady start.

While I’m not sure that a blog necessarily needs any reason to exist, this blog is more an accompaniment to the rest of the site, which I largely decided to set up because I learnt a few useful things I wanted to share with people, when in some areas information can be so hard to come by.  The most notable of these, in my case, was when I suffered recurrent miscarriages along the road to conceiving my son, Harvey.

On the occasion of my first miscarriage, the hospital gave me a leaflet entitled ‘We’re sorry you’re having a miscarriage’.  It was full of condolences and contained very little practical information about what to expect, when I could start trying again or even the basic mechanics.  The subsequent journey involved a lot of digging for information, as well as much heartache, and a mental promise that I would some day sit down and write all the things I had found out in the hopes that it might help someone else.

My son is now 2, so it feels quite late to be getting down to this, but the delay has been caused by two things.  The first is a very simple need to care for my son and be a good mum, having finally got that far.  The second is a less cheerful reason: my chronic depression.  Having suffered for well over ten years, the depression hit back worse after Harvey’s birth, in what should have been the happiest time of my life.

I don’t know where the future leads.  Haven’t a clue.  But the journey, along with some of the more useful stuff I know, will be recorded here.

m x