A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 28 July 2013

Heart of the matter

I'd dozed. It hadn't felt like long, but on waking I couldn't breathe. My lungs had clamped shut. I rang the nurse call bell, she came, I gasped my need for a nebuliser, she said okay, and she left the room. I waited. I gasped. I waited. I rang the bell again. Still nothing. I could feel myself suffocating, and I knew that the staff here didn't know quite how quickly and dramatically my lungs could seize up. The bell rang on, and the nurses passed by the room busily trying to see to each of their patients, not deliberately ignoring me, but not having time to see that i was getting into trouble. I banged something on the table. I can't remember what, perhaps it was a spoon or a cup. It didn't matter, I just needed to make a noise, attract their attention, be given a nebuliser. She came again, surprised that I was gasping so hard after seemingly such a short period of time. I had a nebuliser, and then another, and I felt whoozy, and drifty, and drunk, and unwell.

Another nurse, concern splashed all over her face, trotting this way and that to get meds, get masks, get medics.

Time didn't exist. I have no idea how long this was happening, and I hardly felt like I existed, let alone the abstract of time.

Then doctors, several doctors, and a Sister from the ITU Outreach Team.
'Am I really that ill already?' I think, and close my eyes for a rest. I'd like them all to go away, let me sleep, nestle into the fog in my brain. The doctor wanted to do my blood gasses, and the Sister kept telling me to open my eyes, so I handed over my wrist and let myself be stabbed, too tired to feel any pain.

'She's well known to ITU,' says the Outreach Sister.  'Very severe and often brittle asthma.'

Please, just let me rest. You're all very noisy, I hurt, and I'm sick of being prodded and poked. But as I turn to my right to try to ease some of the pain in my tummy, the doctor leans over from my left and tells me my blood gasses are back and they're not good.

'What are they?' I gasp,
'No, my pCO2,' I correct,  thinking that he's telling me an alkaline pH.
'Yes, your pCO2 is 7.5. Your pH is 7.2.' Worry hangs around his words.
The information seeps in, nuzzling it's way through the brain fog, until it bumps into a small area of consciousness. 'Oh...' Oh, indeed. They are not good numbers. 7.5? My pCO2 is 7.5?! That's a bit of a worry. But I think it rather too rationally, and it's almost as though it's happening to a different me, a not-me.

And we're off! Someone is worried that I'm going to die. Suddenly I am too. I watch the corridors skid around me, hear voices running behind, and feet tapping quickly on the lino beside me. Places I recognise slip by and beyond, we take the lift to level three, they roll me through the empty third floor corridors in haste, following signs for 'Burns Unit','Theatres', 'Intensive Care Units.' A scoot to the left, through the controlled double doors with the swipe of a card, twisted around the bends in the vestibule, arriving in the unit, lain flat, slid on to the most comfortable bed in the world that moves underneath me and massages my tired and pained body. I cry. I am afraid. I don't want this, didn't expect this. I came here with a sore tummy, not my asthma. I should be able to breathe. What's happening?

The mask is strapped to my face, forever blowing air into me, keeping me breathing, bursting the bridge of my nose because it's a little too tight. The doctor takes my left wrist, tapes my hand to the bed frame with it resting over a bag of 0.9% saline, and guides a long wire into and up the artery in my wrist. It is secured in place, bloods are taken from the line, and my hand is released from the captivity of the bed frame, but the wire is left inside to perpetually measure my blood pressure. My readings blink in red and green and yellow on the screen above my bed.

At the same time, someone else has been fumbling with my other hand,  and arm, and foot, and at last they've managed to get another needle into a vein. I am hooked up to fluids and antibiotics, and my portacath is recharged with another infusion of aminophylline. I ask if I'm turning into a machine, which is how it feels with all these wires and lines and lights and bleeps. Someone chuckles a soft no, and a reminder that I'm ITU. Oh yes, I remember now.

Prods and pokes, and, 'Does this still hurt?' I scream out, 'Yes!' and try to move his hand away from my tummy, but he presses again just to make sure. I yelp, he stops, he apologises, and all too soon he and others will be back to do the same again. Appendicitis, that's what they say. They can't operate because 'she won't survive the anaesthetic with lungs like this.' The surgeons insist, the medical doctors deny them access. The surgeons tell me there's no research for survival of appendicitis treated solely with antibiotics - surgery always follows. The medical doctors tell me they have prescribed multiple antibiotics and hope. I pray.

And then I begin to quiver. A kind of shiver, but I'm not cold. I shake as if in fear, and I am afraid, but it doesn't account for this movement. It gets worse. It takes over my body. I squirm, and wriggle, and shake, and I can see, but I  can't make sense of what I can see. My arms wave, my legs jump, my torso twists and writhes, and I cannot stop. The world is static, two dimensional, like a drawing on cardboard. I move my eyes and the image swivels, but it doesn't really change until I blink,  and then I get the next two-dimensional cardboard drawing that doesn't really look like the world. I feel myself being held on the bed, writhing under the grip of multiple hands and bodies. Alarms chime, voices utter words that make no sense, my eyes find those of the consultant in front of me. He speaks clearly, I see his words leave his mouth, and I see his compassion when I tell him I'm scared.
'What's happening? Make it stop,' I plead.
'We will,' he reassures me, then turns to his junior and asks, 'What do we know?'
He perches on the end of the long bench at the nurses' station, which suddenly feels to me like it's in the wrong place. My world is spinning, and twisting, and jerking, and disorienting me while my uncontrollable body tries to fling itself from the bed.

They look to me, study my scans, read my notes, check my blood results, over and over. The consultant has become a detective sifting through evidence, piecing together tge crime that he is witnessing my body inflict on itself.

'Calcium! Her calcium is low, too low. Her potassium and sodium too. This is heart failure with tetany.'

The juniors look unsure, the nurse I think is afraid, and I am filled with terror, not because of the words that are being spoken, but purely because of the physical experience. I am hot, exhausted, can't breathe, desperate to rest, unable really to comprehend the sight of the world around me, and I have no control over my body at all. It insists on flailing around the bed, like someone with a severe brain injury. 'Make it stop. Help me, please! I'm scared.'

The consultant stands at the end of the bed, his junior comes to be by my side. One of the hands that is holding me in place shifts their grasp to take my hand, and keeps it as steady as possible while the junior doctor injects calcium into the needle in my knuckle. My hand stings, my thumb goes warm, and a great heat swells in the middle of my body. It spreads like liquid fire through my insides, up into my chest, across my ribs, and fills me up. The twisting, jerking, writhing spasms ease to become twitches and flutters. The world starts to redevelop it's third dimension, and those around me look more human. I know now what I am seeing, where I am, and feel released from the grip of a deep and physical fear. A few final flicks and I'm free. My calcium stores have been replenished, whilst my potassium and sodium levels are being restored with intravenous infusions. My heart is still failing, and it will for a while, but they are already hopeful that it can be reversed.

I am exhausted. My body has assaulted itself, beaten itself to a pulp, and my mind is battered. I'm in shock. I cannot take in all that has happened since I went to my GP with a pain in my tummy. But I don't have time to rest and consider because I still cannot breathe, I am still in pain, and I still need to concentrate to stay alive. And as I lie in the bed gasping for breath, with the BiPAP mask permanently strapped tight to my face, my body begins to swell with fluid that my heart is unable to pump around my body. I grow. I almost feel myself expand day by day, and as I grow my skin stretches, tightens, prepares to split open with the tension, and it hurts. The weight of the fluid building up around my waist, my hips, my tummy, my chest is heavy and makes breathing even more difficult. I am drowning in myself, I think I will probably die, I hate that I am alone amongst a crowd of strangers, and I shuffle myself away to a corner of my mind that thinks about tummies and asthma and breathing, but doesn't think too much about dying in isolation.

I close my eyes, and try to comprehend all that has happened. I think of the cat and wish he were curled up on the bed with me here. Behind the confines of the BiPAP mask, I clear a space in my head and create an open, green space of calm in which to be alone - an escape from the strangers around me, the machines punctiring the air with perpetual alarms, and the extreme presence of Death lurking in the folds of my bed sheets.

Wednesday, 24 July 2013

A long time

Again, again, it's another long time since I last posted, but this time it's because I'm in hospital.

I've had some horrid tummy pain for a few weeks now, which suddenly got much worse in the afternoon of 11th July. I tried to call my GP surgery to see if there was any chance of an appointment, but their phone line was down for some reason, so I trundled along on the off-chance that I might be able to see a doctor. The receptionist asked if it was an emergency, and although I wasn't altogether sure, I said that it probably was. I was told to take a seat and that I'd be seen after the booked appointments - what I expected.

While I waited the pain was getting worse and I was feeling more unwell so that by the time I saw the doctor an hour later I felt really quite rubbish. He examined me carefully but it didn't take huge observation skills to see that I was in a lot of pain, which Dr Cn said concerned him because, he said, 'I know you're no wimp.'

The doctor wasn't all together sure what the problem was, but suspected appendicitis with some symptoms being masked by my regular high dose steroids. He called an ambulance, requesting it be blue light, but somewhere along the way the message got confused and the ambulance took over an hour to get to me, by which time the surgery was meant to have been long closed.

When the ambulance arrived they got me on board and then ambled along to the hospital Emergency Admissions Unit (EAU), as the doctor had arranged. I was taken straight to a bed in one of the bays and then waited. And waited. And was refused pain killers because I hadn't seen a doctor so hadn't had any prescribed. And I waited,  and the nurses kept phoning the surgical docs to come to assess me and my ever worsening pain, and they kept not coming and I waited. I thought it would have been quicker to have gone along the corridor to A&E, and I still suspect it would have been because I waited four and a half hours before the surgical junior got to see me. Mind you, once she did at last get to me she stepped right up to the mark and I was quickly seen by her seniors several times. They were certain I had appendicitis and I was fairly quickly taken to a surgical ward, stopping on the way at CT for a scan.

Apparently they usually use an IV contrast dye to help show everything up on a CT scan, but they hadn't on this occasion because they were afraid I might be allergic to it. Unfortunately it meant that the scan was inconclusive and I'd have to wait until the following morning to see the consultant before any surgical decisions would be made. In the meantime I was prescribed IV antibiotics and a fentanyl PCA (Patient Controlled Analgesia). At last, some pain relief.

It was a long night with barely any rest, but the staff were nice enough and keen to keep me stable at the very least, so they checked on me regularly and told me to let them know if I needed anything.

Come the morning and I was exhausted,  having slept very little,  and quite frankly, the possibility of an enforced sleep during surgery,  as the consultant explained his plan to be, wasn't an entirely unwelcome prospect. It looked as though I would have an ultrasound scan and then have an investigative laparoscopy, with a probable appendectomy. I would spend a couple of days in ITU, probably on a ventilator, to make sure that my lungs were stable, then return to the surgical ward for a few days before being allowed home.

So there was a plan, and although I didn't relish the prospect of surgery, at least it would fix the problem. I relaxed a little. I fell asleep a while. I woke up, and I couldn't breathe.

Thursday, 11 July 2013


There are a various things going on for me at the moment, most of which I can't discuss in this public arena.  I'm afraid I'll have to be vague and just say that it continues to be a difficult time, so to counteract this, and to lighten the mood of my blog from recent months, I'm going to spend a bit of time thinking about things for which I'm thankful.

1.  Poisonous ivy

Specifically, I'm thankful for the poisonous ivy that's growing up the side of the house opposite mine at the back.  The ivy has been there for years, and other than cheering up a drab wall has been of little note, but this year it has provided a safe place for a pair of blackbirds to nest.  I live in a built up area only a couple of miles outside of the city centre, and very few houses in my immediate neighbourhood have gardens that encourage small birds, but there has been a noticeable difference in recent years.  Maybe it's the conservation work done by 'Friends' of the park down the road, or perhaps folk have been putting bird seed/food out, but over the past few years there has been a rise in the number of small birds in the area (as opposed to pigeons and sea gulls).  We've had a lone blackbird for the past two or three summers that has sat on the chimney stacks and filled the air with beautiful song.  I love blackbird song, and this year the air is rich with it because the lone male has found a young lady blackbird and the pair have nested high in the poisonous ivy opposite.  Apparently blackbirds have two or three broods a year, and my neighbourhood pair are already on to their second.  It's wonderful.  It's not often very noisy at the back, so if you're very quiet and listen carefully, you can hear the tiny chirruping of the chicks in the nest.  As the chicks have grown, the adults - particularly the male - try to entice the youngsters from the nest with a morsel of food and a short whistle of song.  With a lot of encouragement, the fledglings dare to take their first tentative flutters from the safety of their nest and soon learn to fly with confidence.  I love watching this circle of life unfold almost in front of me, and listening to the variety of beautiful blackbird song, and every so often one or other of the adults will venture in to my yard in their hunt for food.  I'm not quite sure what it is they find on the concrete or amongst the flower pots, but they always seem to go away with something in their beak.  Yes, I'm thankful for the blackbirds, and for the poisonous ivy for giving them a safe place to nest.

2.  Friends

I have some wonderful friends who have stuck by me in both difficult times and good.  They text me, phone me, come round to my flat, take me out for an afternoon, send me cards in the post and private messages on Facebook, make me cups of tea, invite me round to their homes, make me laugh, share my tears, sit with me, go with me to the coast or the park, swap a little part of themselves for a little part of myself.  At times my trust in friendship has been challenged by folk who have presented themselves as friends, but have turned out to be far from that.  Those around me now are genuine, safe, trustworthy, and true, and to know that for certain after betrayals that have been is very precious and definitely something for which I am thankful.

3.  Sunshine

It feels like a long time since we had any prolonged sunshine up here in the north-east of the country - perhaps a couple of years - but the last week or so has been beautiful.  Today has been a fair bit cooler with temperatures back down to 16-17C, but I don't mind because the forecast is for it to warm up again tomorrow and Friday.  Sunshine lightens me.  Of course it doesn't take the stresses away, it doesn't make them smaller, it doesn't make them any easier to deal with, but it does force in a smidgen of light.  The warmth of the sun entices me outside, even if it's just to the back yard, and wraps itself around me, like a hug from God.

4.  The cat and the vet

Zach is so precious to me.  He is a wonderful cat with enormous character who seems to know when I'm upset, when I'm ill, and when I need cuddles.  He also loves to come for cuddles when I'm lying on the sofa with the computer perched on my legs and tummy; he leaps up, on to my feet, clambers around the side of the laptop, sits on my chest in front of the computer screen, and purrs in my face.  Not particularly helpful for typing or seeing any of what I'm trying to do on the laptop, but his purrs are irresistible so he more often than not gets the cuddles he's demanding.  He's got his summer coat at the moment (obviously), which seems to be a great deal thinner than his winter one, and as he's aged he's lost a fair bit of muscle mass.  He's still very fit and healthy, but he'll be sixteen later this month so he's getting to be an old man and I can feel the bones of his spine when I stroke down his back.  He spends a lot more time sleeping now than he used to, although he still has a lot of crazy running around times, and he is still fantastic company.  I love Zach so very much and I'm thankful for the love and joy that I get from him.  He hasn't often needed a vet for anything very severe (only twice in his life), but even the little things they do for him make me thankful that they are there.  I had to take him last Friday because his claws needed clipping.  They'd needed to be done for a couple of weeks, but with stresses of recent times I'm afraid that they'd been somewhat forgotten about, and then on Friday he got the two innermost claws on his front paws entwined in each other when he was clawing at his scratching post.  He couldn't get them unhooked so I had to help, which wasn't easy and he was obviously distressed about the situation.  I explained to the veterinary nurse what had happened when I took him for his claw-clipping an hour later and she had the vet take a look at him.  The poor little lad has sprained one of the toes on each of his front paws, but he's okay, and after keeping a close eye on him for the past 5 days I think he's probably healed now.  So yes, I am thankful for the vet for keeping my precious little lad healthy and checking him over for free last week.

5.  My wheelchair

When I think what I used to be able to do it almost seems unreal ... it certainly feels unfair at times.  One of my brothers and his family are going camping this summer, which is something I used to love.  The last time I went camping was in 2006 when I had an amazing holiday on my own, camping my way around the country for four and a half weeks.  It was meant to be three and half weeks, but I extended it after spending a week in hospital (including ITU) in Cornwall, not letting a little thing like the inability to breathe stop me from having the holiday I'd planned.  It was fantastic, but I suspect that I'm not very likely to camp again as there's a significant lack of electric plug sockets in a tent from which to charge a powered wheelchair.  All the same, I'm thankful for my wheelchair - Noah - because it gives me other freedoms - the freedom of independence in the outside world.  Of course, there are limitations as many buildings still aren't fully accessible, and much of the countryside isn't at all wheelchair friendly, for example, but I can go out, on my own, on the bus, in to town, to the park, along many public footpaths further afield if I go out in the car. I don't have to rely on family, friends or carers to push me in an attendant-assisted wheelchair, or on my lungs for breathing to use a manual wheelchair, or on my balance (POTS) and lungs for walking.  My independence is important to me, and I'm thankful that I have access to a means to maintain that independence as much as is possible.

6.  My mind

Okay, so depression is awful, but depression isn't all that my mind has given me.  I'm thankful that I have the mind I do, because with it I can think things through, I can reason, I can consider, I can be logical, and I can be illogical.  My mind gives me choices and the capacity to make decisions;  it allows me to challenge situations and concepts; it contributes to my creativity; it helps me to recognise emotions and identify why I feel what I do when I do.  Without my mind I would not know that there are things for which to be thankful, and I wouldn't know that I am thankful for those things.

7.  God

The ultimate 'thing' for which I am thankful is God.  Without Him I would not have my mind, my thankfulness, my being, or anything else which deserves thanks.  I thank God for God.