Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

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,
'7.5'
'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.

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.

Thankful

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.

The pit and the monster

I think I've said before how, some time ago, I came to the understanding that depression is a monster that tells you lies.  I've used this analogy a lot in my psychology sessions, and it's come to represent depression itself as a beast.  I've described the experience of depression probably as many others have done - like being in a deep pit.  Whilst it's quite an easy and obvious metaphor, it's also quite useful, because emerging from depression isn't usually (unlike my previous miraculous experience) a change that happens in an instant.  Rather, there is a slow recovery, a gradual relief that can be difficult to see happening whilst you're in the experience.  Using the analogy of the pit kind of gives a scale to the depression ... it means you can sort of describe how far down or up the pit you are; whether or not there are any signs of life in the soil or above the hole; whether or not you can see light at the top of the pit; how muddy the pit is and whether or not it's sucking you down further; and whether or not there's anything around that you can use to get out of the pit.  I also imagine that the vicious beast - monster - of depression lives at the bottom of the pit, and the closer I am to the bottom, the louder and more numerous are the lies it is telling me about myself.

I was talking with my psychologist again during the last session about where in the pit I see myself as being at the moment.  A couple of weeks ago, when I wrote Away with it, I/we thought that I was maybe half way up - things were still very difficult, but there was a bit of light at the top of the pit, and perhaps there was a worm (a sign of life) wiggling a little way out of a hole in the side of the pit.  Talking in the last session, I said that I felt that I'd sunk a bit.  I'm not on the bottom, like I was when at my worst point, but there was no sign of any worms for company, no signs of external life.

I often talk with my psychologist about the things that make me sink in to the pit, how I ended up there, etc, but my homework this week is to think about those things that have perhaps helped me to get off the bottom of the pit; the things that have helped me to ignore/challenge/not listen to the lies the monster tell me; the things that helped me to get as far up the pit as I managed to get before slipping back.  It was suggested that perhaps I might write my thoughts about these things on my blog, and before the end of the session I'd decided that yes, I'd write about it here because, after all, I've shared with my blog readers much of my depression experience.  This might take me a while because I haven't actually thought about it a great deal since my psychology session on Friday as my mum's been staying with me over the weekend.  What follows will very much be me thinking out loud, so if it doesn't make a great deal of sense, that's why.

So, Things that have helped me so far in surviving/recovering from depression:

1.  My psychologist and the sessions with her

S has been a constant for me during all of the distress.  I have felt able to talk to her about anything and everything, sharing my darkest and most frightening thoughts, the true extent of my desperation.  I've cried a thousand tears in front of her, broken down in uncontrollable sobs, and known that I've been safe to do so.  I've trusted S with the most vulnerable and broken pieces of myself and known that none of it would be turned around and used against me (this is in contrast to someone else in an on-going situation, so has been a very pertinent point, and a significant trust).  Unlike the multiple faces of the Crisis Assessment and Treatment Team (CATT), and the unreliable presence of the CPN, S has been there throughout without sessions being cancelled or postponed, and she is one person with whom I haven't continually had to relate the origins of my distress.  Yes, S has been, and remains, vital in this process of defeating the beast and finding a way out of the pit.

2.  Friends

I was terribly afraid of telling my friends that I was in the bottom of the pit and being devoured by the monster (and that's not how I put it to them when I did tell them).  I was afraid because of all that I'd put them through during my previous severe (and very long) depression.  I thought that maybe they'd be too afraid to stick around, not so much afraid of depression, but afraid of what depression has done to me before and how difficult that was for them to watch.  So I tried to keep it from them this time.  I tried to separate myself from them to pre-empt the pain I would feel if they couldn't cope with the depression again and opted to separate themselves from me.  It turned out that all of that was one of the lies that the monster was telling me and got me to believe, because when I did ultimately 'come clean' to them about how desperate I was, they held me in their friendship.  My close friends came to me, sat with me, and took gentle care of the pieces of me that they came across.  They still do.  They text, email, tweet, talk to me on FB, and come round to my flat.  They encourage me to do things with them, to go places, and when I'm not physically well enough to do that, they come round.  One of them has started tidying up my huge back yard for me so that it's a nice area for me to sit in or just to trundle through as my wheelchair access is at the back of the house.  They encourage me to go out with them, meet them in the park for a trundle.  They suggest that maybe they come over to bake cupcakes, just because it's a nice thing to do.  They take me to shops I didn't know about to buy games for my Wii.  One of them has sometimes phoned me in the middle of the night when she knows that I'm likely to be at me lowest, and she has talked with me for five hours, six hours, all through the night, during which time we've cried, we've laughed, we've done the whole spectrum of emotions and covered every subject imaginable and some you might not think about.  They 'keep me safe' in all my insecurities about seeing mutual acquaintances in group situations that terrify me simply because I haven't seen others for so long and I dread the question, 'How are you?'  One or two of those friends occasionally read my blog, and if those friends happen to read this I would like to say a sincere and heart-felt thank you.  You are so very precious, and I hardly dare believe that I deserve such wonderful friends.  Thank you.

3.  Music

I've written a little about playing the piano again, and spending hours immersed in playing the violin again.  I haven't been physically well enough to do any of that for several weeks now, but those were things I was doing when I was a little further up the pit than I currently am.  But they haven't been the only musical things I've been doing.  The choir I helped get up and running last year - Flotsam - is very important to me.  Since being ill with the pyelonephritis again I've been too poorly to go to choir and I've found that really difficult.  Choir gives me time with people (very important when I spend so much time on my own, unable to work, unable to get out much because of chronic ill-health) without having to interact too much with many if I'm feeling fragile.  Choir gives me a place to belong, somewhere I can be a part of something good, a place where I'm the same as everyone else because we are all singing.  Okay, so I can't be the same when they all stand to sing, but I'm kind of used to that, and it doesn't change the fact that I'm still singing just as they are.  Flotsam's choir master is a dear friend who has known me (and I've known, obviously) since I was thirteen.  He has seen me through some of the toughest times of my life, and even if I don't tell him any details, I always feel able to tell him if I'm not doing too well, and that has made Flotsam a very safe place to be.  Of course, music itself can have an emotional effect, as I'm sure most of you have experienced for yourself, and the music we sing in Flotsam tends to be either uplifting or soothing.  Music is also a part of me, something that has always been in my life, and has sometimes been my only way of expressing anything at all.  It allows me to connect with the world - something in the world - that nothing else quite reaches, and it has been a creative outlet for me at a time when I've felt extremely stunted in my ability to creatively express myself in writing.  It's not the same, but it helps.

4.  Mum

During most of my previous deep depression I was largely unable to talk to my mum about any of my feelings.  For various reasons I was angry with Mum, and I closed myself off from her.  It was kind of necessary at the time, but there's been an enormous amount of healing that has gone on between us and we now have a wonderful relationship.  Mum's support throughout this horrible time of depression has been invaluable and constant.  She's phoned me often, but not intrusively so, and during the calls I've been able to tell her a lot of how I've been ... yes, at times I've held back from telling her everything, but in the end - maybe a few weeks down the line - I've been able to share most of those things too.  Mum's been down to visit a few times, which has been very supportive, great company, and has provided much-needed TLC.  Of course, there was also my trip up north to stay with her and J that unfortunately culminated in a hospital admission with pyelonephritis.  Before I took ill, I was having a lovely, relaxed, gentle time with Mum and J, which felt nurturing and lightly refreshing.  It was bad luck that I got so poorly and didn't really get over it while I was away so that it came back almost full-on shortly after getting home.  The goodness gained by staying with Mum was largely erased, unfortunately, except that it helped me with number 5...

5.  Making some decisions

Out of necessity, I'm going to be quite vague here.  Firstly, there has been an on-going situation that has caused me a lot of distress.  I'm not currently at liberty to expand on this for various reasons, but time with Mum, talking with Mum, and several in-depth conversations with my psychologist about the situation have led to me reaching a decision.  I've yet to act on the decision made, but I'm working on it, and even coming to the conclusion that I have has helped.

There is another decision that I'm going to be equally vague about, but concerns something I've thought about a little in the past.  I mentioned it to Mum when I was with her in Edinburgh, and since then have thought about a great deal.  It's probably something for the long-view rather than to implement immediately, but I am beginning more detailed thinking about it, and have decided that I will most likely follow it through at some point.  I think it's a good decision to have made, but will take considerable work.  Anyway, enough of being vague.

6.  Getting out

I've been too unwell with the recurrent pyelonephritis since coming home from Edinburgh to go out much at all.  My days have been pain-filled and isolated as I've lain in bed or on the sofa trying to rest, trying to get/keep my temperature down, watching the clock for when the next antibiotic is due or pain killer can be taken, cuddling the cat whenever he's wanted and sometimes when he hasn't been too keen on it, watching daytime telly, and whiling away time on FaceBook.  Before that I was trying really hard to make sure that I got out at least once a day.  It might just have been to the shop, the park, a trundle around the local streets, or it might have been to town for some window shopping, or a wander along the quayside.  I was avoiding driving anywhere because my concentration was so poor that I didn't trust myself to be safe, which meant that I couldn't take myself off to the coast - a place I usually manage to find some solace.

7.  FaceBook

Okay, so this might sound strange to some, but I've found the contact with others through FaceBook valuable.  At my very worst, when I wasn't able to tell my friends how I was, I didn't go there - I found it very, very difficult to interact with anyone in case I let it slip how I was - but when I did tell folk what was happening, FaceBook helped a lot.  While I was isolated in my depression and by my difficulties in mixing effectively with others, I could roam around FB in the ethereal presence of others online.  I have wasted many, many hours playing Bejeweled Blitz (sic) and Scrabble, clicking on links to You Tube videos posted by others, reading every status update of everyone on my friends list, and looking at millions of pictures of cats.  To those of you who have never experienced depression and have busy, active lives may see all that time on FB as a total waste, but actually it's kept me connected to the world and reminded me of all people I know who are out there.  It's given me something to do, and 'somewhere' to be.


I'm finding it very difficult now to think of other things that have helped.  I'm sure there are more things, but I've been trying to write this list for three hours now and I'm brain-dead.  Perhaps more will come to mind in the coming days, but I have more 'homework' to do ... and it's difficult, so it may be a while until I get back to you.

Progress report

'Progress' isn't really the right term to use as there hasn't been much of it.  Since I came home I've had something of a relapse, and haven't been able to do very much at all.

Earlier in the week, when the fentanyl patch was due to be replaced I thought I'd see how I went without it, thinking that I won't know what progress I'm making if the patch is so effective as to eliminate my pain, or perhaps it's that the pain is no longer a problem.  In a matter of a few hours it became clear that pain was still a problem.  My kidneys were again thumping me in the back, and then I noticed some bladder pain on urinating.  I slapped another patch on and waited for it to take effect, but as the levels of fentanyl in my system had dropped during those few hours without a patch, I had to wait some time for the drug to kick in again.  The pain gradually lessened, but I was still utterly exhausted, and then my temperature started to rise again.

I knew there wasn't a lot of point in phoning the GP surgery to get an appointment to see a doctor as it was the middle of the afternoon, and it's usually fairly impossible to get an appointment if you phone any later that 8.50am.  I rang anyway, on the off-chance that there might be a cancellation, which there wasn't, but I went on the call-back list.  After putting the phone down it occurred to me that, even if I couldn't get to see a doctor that day, I really ought to speak to one as my temperature was back up to 38.7C.  I rang them back, explained to the receptionist that I'd been in hospital, and that things were now deteriorating again.  He suggested the on-call doctor phone me back at the end of surgery.  That was fine by me so I waited.

One of the very good things about my GP practice, isn't just that all the doctors and nurses are very good (and the reception staff/secretaries too), but they also give each patient what time they need, rather than insisting that each patient consultant must be a maximum of ten minutes.  Of course, the downside to this is that the doctors quite often run behind.  Many complain when they have to wait, but personally I don't mind, because I know it's down to the doctors putting the needs of each patient first.  But on this particular day last week it meant that the doctor didn't get to call me back until 6.25pm.

I explained again about having been in hospital with pyelonephritis and how, since being home, I'd had a resurgence of symptoms.  He said that given the history, it was probably safe to assume that the pyelonephritis was back/hadn't ever gone away properly, and said to resume the antibiotics.  The problem was that the surgery was officially closed, the pharmacy was due to close any moment, and I was too ill to get up to the surgery to collect the script anyway.  He asked if anyone would be able to collect the script for me, but I didn't think there would that evening.  However, someone may be able to the following day.  The doc told me to keep a close eye on my temperature and if it rose much more overnight I was to seek medical help, but otherwise he'd leave the prescription at reception for me to get in the morning.

I have a great friend, JM, who also happens to be a GP, though not at the surgery I'm at.  However, he knew I'd been ill and was struggling a fair bit at home.  Just as I put the phone down from my own GP, JM called me to say he was just leaving work and could he drop round on his way home to check me over.  Bless him.  He came, he wasn't too impressed with the bedraggled heap that lay before him on the sofa, and I told him of the conversation with my GP.

At 8.25 the following morning, JM rang my doorbell.  He'd left a specimen bottle with me the previous evening, suggesting that I drop a urine sample round at my GP surgery, and this morning he'd come round to collect it and take it to the the surgery for me (that's friendship!).  Having dropped off the sample, he then picked up the prescription my doc had left at reception for me, went to the pharmacy, and was back at my flat by 9.10am.  I downed the first of the antibiotics and took myself back to bed.

I was rather hoping that the antibiotics would do their stuff very quickly and that I'd soon be better, but it hasn't worked like that.  Four days in to this course of antibiotics and my temperature is still going up to 38.2C fairly regularly, and on Friday it was 38.9C.

I am completely wiped out.  I have no appetite, I feel nauseous when I do eat, and at random other times too.  I have been out to a couple of hospital appointments during the week, but have then been knocked for six and unable even to get dressed.  Each day, usually in the afternoon, I've eventually managed to scrape myself out of bed in order to slop myself over the sofa, where I've stayed till late evening when I've duly scraped myself off the sofa and slopped back on the bed.  Time is passing, but I don't feel as though I'm making much progress at all.

JM has been keeping in contact via text, and has dropped by several times either to see how I'm doing and to leave me some fresh milk, juice, and fruit (he is ever so good to me).  Today we had a brief text conversation and JM suggested I see my GP this week because the antibiotics really ought to have me feeling a lot better by now.  I might try to get an appointment tomorrow, or I might see if the doc will do another phone consult with me, which would save me from having to drag myself to the surgery while I feel so crappy.  I'll see.  I have the CPN coming round tomorrow afternoon, and that might be quite enough for one day.

I am absolutely fed up with this.  I'm sick of being poorly and being exhausted.  After so long with such terrible pain, it now gets to me if I even have just a little niggle - I just can't be bothered with it and don't have the patience for it.  Most of all, this prolonged physical illness with pyelonephritis is not helping my mental health in the least.  I don't have the strength, energy, mental or physical capacity to do anything that might be at all helpful in easing any of the depression symptoms, and the pyelonephritis itself actually makes me feel more depressed.

I just want to be better.  I want to be physically better, and I want not to have this horrible depression hanging over me.  So far, this year has be crap.

Not as planned

It feels like an age since my last post.  I know it's ten days or so, but it feels so much longer because so much has happened.

I can't remember what day it was that I last posted, but in the early hours of the morning of the Thursday (30th) everything started to go horribly wrong.  I lay in bed, trying to sleep and not doing too good a job of it, tossing and turning, and was a little worried that my lungs might go off because I'd had a bad day with them all during Wednesday.  I just began to doze off around 3.30am when I got a sudden stabbing pain in my back around my left kidney area.  At first I thought that maybe I'd just twisted and pulled something, but it kept coming back and was getting worse.  I tried to ignore it.  I took some pain killers.  I tried relaxing.  I tried different positions.  Nothing helped and it was still getting worse.

I heard Mum get up for the loo at around 5.30am, and on her way back to her bedroom I called out to her.  She came in to my room, saw that I was clearly unwell, took my temperature and sure enough it was 38C and climbing.  It was obvious that I was going to need to see a doctor, and probably sooner rather than later as I was in so much pain, so I phoned NHS24 (the Scottish equivalent of NHS Direct/NHS111).  The call handler asked a few basic questions then put me through to a nurse practitioner, who repeated some of the questions, asked a lot more, and made an appointment for me to see the out of hours doctor at 7am.  The out of hours service covering the area where my mum lives is actually based in one of the out patient departments of the Royal Infirmary Edinburgh (RIE).

As I was in no fit state to drive, nobody else was named on my car insurance, and the insurance company was closed because it was well out of office hours, we had to get a taxi to the hospital (my wheelchair doesn't fit in Mum and J's car).  By this time I was in agony, my temperature had risen to 38.7C, I was bright red, sweating, and feeling completely crap, so I wasn't surprised that the taxi driver guessed that we were going up to the hospital.

J and I arrived at the Out of Hours 'department' fifteen minutes before my appointment time, but the nurse took me straight through after the two doctors at the desk had glanced at me and looked a little horrified.  The nurse took a history, took my temperature, had me give a urine sample (lots of blood in it), and quickly decided that I'd have to go round to A&E.

I have never seen A&E so quiet!  There were loads of empty cubicles and hardly anyone in the waiting area, but I rather suspect that I wouldn't have had to wait long even if there had been more folk there.  Anyway, I saw the doctor soon enough, who made me yelp with the smallest of touches to my left loin area, so ordered a CT scan and then dosed me up on pain killers - lovely IV fentanyl (about a hundred times more potent than morphine, to which I'm allergic).  Oh my word, I could almost have laughed with the relief from the pain.  It was practically instant, and as fentanyl's a strong opiate, it's not terribly surprising that I felt very spacey.

The doctor had been concerned that I may have kidney stones, which is partly why she ordered the CT scan, but thankfully the scan came back clear for stones, instead showing inflammation and confirming the other diagnosis of pyelonephritis.  That's what I had back in February and it felt very much like that so I was expecting it to be pyelonephritis, but as there is a family history of kidney stones it could well have been that too.

I was admitted first to the Combined Assessment Unit where I was given some IV antibiotics, and eventually some more IV fentanyl too as I was close to screaming in pain. The CAU is just a stop-gap 'ward' though so at 1am I was transferred to a proper ward.  I thought that I might have been taken to one of the renal wards, but actually I went to the respiratory ward.  This may seem a bit daft at first thought, but actually it was because they were concerned that my asthma should be managed well because it's so brittle and unstable.  Also, fentanyl has significant risk of suppressing breathing, and by this time I was needing it IV every hour, so it was actually a very sensible decision to put me on the respiratory ward.

I've only been in this hospital twice, and it's quite a big hospital, but very strangely I ended up not just in the same ward as last time (after I was in ITU on the previous occasion), but also in the same bed!  The chances of that have got to be slim.

I have to say that all the care throughout my stay was excellent.  My asthma was managed well, all my meds were prescribed correctly (that doesn't always happen when you're on a lot of different meds at unusual doses), there was good communication between the different medical teams (although I was on the respiratory ward, I remained under the care of the general medicine doctors), all were concerned to get my severe pain under control so got the Pain Team involved, the nurses were great, and they all seemed to manage with my allergies well too.  I remember it being similarly excellent when I was in RIE with swine 'flu a couple of years ago, but the continuity of that excellence has made me even more confident in them.

So the care was great, but the illness was terrible.  My temperature was high, my blood pressure was low (often around 85/45), I was rigourous (shaking from the high temperature), the pain was agonising, I was nauseous, and I was completely exhausted.  The pain has continued, and I'm currently using fentanyl patches and nefopam to control it.  But I have finished the antibiotics (which were IV for the first four days) and I have managed to get home.  Actually, I was discharged early - too early really - because I had an appointment at one of the hospitals in Newcastle on Thursday that I was keen to get to.  Had I not had that appointment then RIE wouldn't have discharged me when they did on Tuesday evening and I probably would have stayed with Mum and J for longer after discharge.  As it was, though, I put J on my car insurance for 24 hours, and he drove me back to Newcastle in my car.  We drove straight to my hospital appointment here as it was at 11am (we left Mum and J's house in Edinburgh at 7.20am), and J waited for me to finish before he drove me home, then did some basic shopping for me, and eventually he got the train back to Edinburgh in the middle of the afternoon.  Bless him, he's ever so good to me and I so appreciate it all.  I really don't think I would have managed to drive myself down that day, and I was exhausted enough as it was with what I did do.

I'm now at home, currently sitting out in the back yard making the most of the afternoon's sun, and the cat is curled up next to me in the shade - he is a limpet cat at the moment, not wanting to leave me alone for even a few minutes.  I still have some pain, but I'm also still on the fentanyl patches and nefopam.  I'm still extremely tired and lethargic, and I still don't feel properly well, but I am a lot better than I was when I was admitted to the RIE.  My head is rather all over the place, and I feel somewhat shell-shocked by the pyelonephritis and hospital admission, and if I'm honest, I'm a concerned that there doesn't seem to be any explanation as to why I got pyelonephritis this time.  In February it was due to having a catheter while I was ill with my lungs, but that wasn't the case this time, and neither did I have a lower Urinary Tract Infection (UTI) from which it could have spread to my kidneys.  I don't know if this is something that's going to have to be looked at and thought about now that I'm home, or if it'll just get passed off as one of those things.  I can't bear the possibility of this becoming something else I'll just have to learn to cope with - another chronic condition - because the pain is so, so terrible.  I hope none of you ever have to experience it.