The only thing that ever made my Dad cross when I was growing up was that childhood whine, "I can't do it."
He would make me keep trying over and over again until I cracked it and always told me I could be anything I dreamed of, achieve anything I set my mind to.
Over the years of being a patient, his advise has often been the only thing to get me through. However unpleasant a test, however searing a pain, however much I feel like giving up, I hear those words, "There's no such word as can't." I remind myself that however much something might hurt, however unbearably uncomfortable an investigation might be, if it isn't going to kill me then there's no reason to be frightened.
The most horrific incidents are now burnt into my memory. I've been diagnosed with Crohn's since I was 16, and in all those years, no-one has ever given me any emotional support at all. I've never been offered counselling, no-one has ever enquired how I deal with my illness and a doctor has never, ever asked me how I cope or offered any suggestions.
I know that some of the readers of my blog suffer from mental illnesses, and I know very well from my poor husband that depression is very real. With that in mind, I hope they understand what I mean if I say "I don;t do depression." I don't mean clinical depression, I mean reactive depression. The more I mope about, the worse I feel, so I've learnt to brush myself down and get on with life, locking the horrors away in a little box in my mind.
To my dismay, a while ago, the lid of the box kept pinging open. Seemingly randomly, an image of some dreadful living nightmare would pop into my mind unbidden, and I'd struggle to breathe. My hands would go clammy, my heart would race and I'd feel a scream welling up in my lungs, thumping against my chest to be let out. I could be cooking the dinner or waiting for a bus and suddenly, a sound or a smell would trigger a memory and I'd feel like I was there again, back in that particular moment of terror.
I find it incredibly hard to talk about my feelings, even with my husband, so telling the world wide web now is probably a little beyond me. However, to cut a long story short, I was diagnosed with Post Traumatic Stress Disorder (PTSD) and referred for treatment. unfortunately, that was just the day before I had to come back into hospital.
My very worst times in hospital have always been when, for whatever reason, I've been left in pain for hours on end. Unable to get out of bed, I've been left to suffer helplessly, with no way of knowing if anyone will ever come to help me.
These days, I am always written up for the right painkillers and I am able decide myself when they are given. As long as that system functions, I am pretty happy-go-lucky and all is well. It's the one thing I can control, the one crutch that enables me to bear the other indignities. As long as I can stay out of pain, I can focus my emotions on dealing with everything else.
I was moved earlier from one ward to another, and when I got there, I was due some painkillers. After a few minutes, the nurse came back and told me that they didn't have any on the ward and they would have to order it from pharmacy, which could take hours. Bam! The steel band slammed on my heart, squeezing out the air. I wanted to scream or run away or both. Like a slide-show, vividly real images flashed through my mind, an album of horror. I was helpless. My one defence against absolute dependence uncertain.
Many of you have said how well I cope, how strong I seem. The thing is though, I'm just human, exactly like you, I'm no stronger or braver, I just have no choice. I have to force myself to tolerate needles and tubes and blood and pain without making a fuss, but it seems my mind has other ideas and has drawn a few lines in the sand.
I've also mentioned, how over the years I've had to force myself to drink gallons and gallons of unpalatable liquid feeds. Apparently enough of that is also enough and my brain simply refuses to let me drink large quantities of unpleasant liquids any more. Like Gillian McKeith on a bushtucker trial, I just can't make myself do it. There is such a thing as "can't" and it feels horrible.
In the midst of my panic over the lack of painkillers, a porter arrived to take me for my MRI scan. Struggling to breathe and control the enormous lump of panic in my chest, I had no choice but to get into the wheelchair and be pushed through the hallways in floods of tears, hiding my face in my hands for dignity. Without my meds, I felt unbearably sick and by this time my painkillers were two hours overdue, so the pain was gnawing and stabbing unmasked.
In this shameful state, a radiographer appeared with a 2 litre jug of liquid and explained that I'd need to get through it all before they could get a useful image of my bowels. Slam! The belt tightens more. I see forced tubes and failed biopsies and agonised presses and the scream bubbles closer and closer to the surface. I sit like an imbecile, rocking, unable to explain why I was behaving so oddly. A slightly detached me could see that I looked neurotic and pathetic and difficult but "Can't" had caught up with me and I was totally unable to shut it back in the box.
The test I'd waited so long for was slipping away and I couldn't do a thing to stop it. Defeated, they pushed me back up to the ward, still sobbing and choking on panic. I'd never refused a test before - never even complained about one.
The oddest thing about all of this, is that rather than becoming more supportive or sympathetic, the nurses largely left me to cry and panic alone. They were irritated by my weakness and suspicious of it's motives. I've had the injection now (2 and a half hours overdue) and I've just had some supper, but no-one has spoken to me, no-one has checked if I'm more comfortable or happier and no-one will now. Tomorrow I will smile and joke with them and we'll all pretend it never happened. If I'm lucky, they'll give me the benefit of the doubt - another chance before they classify me as "neurotic" and I lose my trust privileges. **
I can't tell you how I detest sharing this with you all and I am wriggling with embarrassment at the thought of posting it, but it's the kind of event that I've always wanted to share with the world, so I'll just have to swallow my pride. (There's room now the enormous ball of panic has finally gone down.).
The moral of my story, is that even the best nurse or doctor can forget what it is they ask their patients to suffer, how much courage they expect them to find. They have a job to do and it's the easiest thing in the world to forget how traumatic all of the needles and tubes and side effects can be. Even so, if a patient says they can't bear to go through a particular procedure, it is always worth asking if you could do it yourself. Not only could you do it, but could you make yourself do it over and over and over and over again?
**Trust privileges include going for cigarettes un-escorted, freedom to go down to the shops to buy snacks, friendly care and extra cups of tea.