Shuffling

It's a ridiculous length of time since I last posted, for which I apologise, but I really don't know what to say.  I'm sort of shuffling along, and I guess things are a little better than they were, but it's hard to see it day-to-day.

I'm not getting very much from the CPN, and have given up any expectations I had.  It's not that she isn't coming to visit, but more a difference in personalities, a clash of ideas of what might be helpful, and ... hmm ... how do I phrase this? ... I don't feel respected.  She obviously isn't a Christian, which shouldn't matter, and hasn't mattered in the past with other clinicians, and actually it shouldn't impact at all on the patient-CPN relationship, but it does because she dismisses my beliefs as unimportant at best, and as a sign of mental illness at worst.  I don't necessarily expect her to share my Christian beliefs, but I do expect her to respect them and not treat me as a nutter simply because I have a Christian faith.  I don't have extremist beliefs.  I'm not part of some strange cult or sect.  I am part of an Anglican Church community in the neighbouring parish to where I live, and within that community, some of my views are quite liberal.  All of it is far removed from anything that could be considered even remotely crazy.  So yes, it's tricky with her.  I feel as though I have to seem willing to try and at least give it a go, but I no longer have any expectations of helpfulness.

It's not just the thing about her response to my faith, there are other things too.  I suppose most significantly is that a lot of the time she makes me feel like I'm just a case study for her student.  I'm 'good experience' for her; I'm 'something interesting to look up' when they get back to the office; I'm a 'good example of a high functioning, intelligent depressive'; I'm 'a complex and interesting case' for the student to follow through, and 'Oh, wouldn't it be good if the student could see [me] get well, although she's only on this placement for another three week.'  No pressure then!

Thankfully I still have the psychologist who continues to be helpful.  The sessions are hard work, but I trust the psychologist and feel able to tell her anything, even if it's sometimes difficult to say the words.  The difficulty is in expressing myself or trusting myself with the words (which, I am aware, sounds odd), rather than difficulty with trusting the psychologist.

There's still a degree of crisis management being needed in the psychology sessions, and when it's not quite crisis management it's kind of one step removed from that - maybe day to day management rather than minute to minute.  Eventually I will be doing some specific work on the flashback aspect of the PTSD, but the psychologist wants me to be a lot more stable and feeling much more robust than I currently am because it's very demanding.  I know this from previous CBT I've had for totally different reasons, so in many ways I'm in no hurry to start this work, but on the other hand, 'life' with PTSD is crushing.

Between appointments with the psychologist and the CPN I do feel like I'm just shuffling.  I keep trying to write, but it keeps not happening - you have born witness to my lack of writing even on my blog - although I have managed to do some editing last week for an acquaintance's End of Module Assessment for their current Open University course.  My brain wasn't in the best place for doing it, because concentrating is still difficult, but it did make me feel useful and it was productive, so the hard work was worth it.  The other thing I have been doing is playing the violin a bit.  I used to play a lot.  At one time in the past it felt as though my violin was an extension of me, and although I'm not back to that stage, it does feel good to have that creative outlet again.  I started off with playing the piano again a few weeks ago, and I'm still doing a bit of that, but I get different things from the piano and violin, and it kind of feels like the bit of brain that does the violin playing is perhaps next to the bit of brain that does writing.  I'm hoping that the violin-playing bit might nudge awake the writing bit and get it working again.  I've mostly been playing one piece of music - Bach's Concerto for Violin and Oboe in D minor, although I've been playing the oboe part on the violin as this is the part my old violin teacher had me play.  It may only be three movements long, but I can spend a couple of hours playing, replaying, and taking this piece apart.  I play along to a CD recording so that I get the experience of playing the whole piece with an orchestra.  I'm not sure my neighbours appreciate it, but I try to ignore that and instead get absorbed in the music.  Even though I'm not able to do it every day, I think the fact that I can do it at all is progress, and maybe, just maybe it'll even help me progress further.

I'm sure there was something else I was going to say, but my mind seems to have turned to mush and suddenly I can't think where this post was going.  I guess it's part of the shuffle - it's a bit directionless, but with a general hope that it might be vaguely forwards.  Um, yes, so er, I've completely forgotten where this was going so I'll stop, but I'm hoping to get back well before the time between this post and the previous one.

Beyond the CATT

It's the early hours of the morning and, yet again, I can't sleep.  I haven't slept properly since just before my hospital admission in the middle of January.  I am chronically sleep deprived, utterly exhausted, but getting to sleep is a real problem.  Even once I do eventually get to sleep I dream of violent and upsetting things, or have dreams based upon the realities of what happened during my last admission.  No sleep is restful and I am so tired that I feel as though my brain is melting.

The whole sleep thing is doing nothing to help my mental health in general, and it's most likely making things worse.  I'm doing all that I can to help myself - doing all that's asked of me and suggested to me by the professionals and helpful friends - but the extreme tiredness is crippling and inhibits any success those things may have.

In the past week I've also been finding things more difficult because the supportive input has been cut back.  The crisis team (CATT) said they thought it was the right time for me to be moved on and have my care transferred to the Community Mental Health Team (CMHT) as they can provide more long-term support.  The problem with this for me, though, is that CATT were coming to see me at least every other day, but the CMHT can only come a maximum of once a week, and I feel like I still need more input than that.

I was appointed a Community Psychiatric Nurse (CPN) from the CMHT, and on Wednesday last week I had a joint meeting with her and a member of CATT who'd seen me quite a lot during my time on their caseload.  It went okay, I guess, but it's going to take time to get to know my CPN, how she works, and what she can do with/for me.  She came again on Monday, and to be honest I didn't feel like it was very helpful.  I was feeling distracted by the chaos in my flat caused by the arrival of my new cooker at the weekend, which was sitting in the living room until it could be installed later in the week.  I couldn't think.  I couldn't concentrate.  I couldn't work out my feelings.  The phone kept ringing with junk callers, and although I let the answer machine take the calls, I still felt distracted.  In fact, it all felt rather disorienting, even though I was in my own home.  I couldn't connect either with the CPN or with myself, and it didn't help that my lungs were being really twitchy too.

We made another appointment for her to visit me, but that won't be until Wednesday next week.  That's nine days between appointments, which is an almost incomprehensible length of time for me at the moment, and so very different from the two days (at most) between appointments I've been having with CATT.  I've been told that I can still call the CATT helpline number if I need to, and I have done once, but seeing as I'm not really under CATT's care any more it feels like I'm breaking the rules ... even though I'm not.  Yes, this is something only I can change, but it's not easy.  Nothing is easy at the moment.

You know, the other thing that I'm finding difficult about all of this is the simple thing of me needing to have this referral to the CMHT, and to be needing a CPN again.  I'm disappointed in myself, hugely disappointed.  Depression had been an awful part of my past that I'd moved away from.  I'd got my antidepressant dose down to the bare minimum.  I'd had very little contact with any of the mental health services for a number of years, and last year had finally been discharged by the psychiatrist.  I had two months short of ten years of freedom from depression, despite increasing difficulties with my physical health.  I studied hard and got two degrees, writing the majority of my essays for those degrees in hospital, sometimes in my head while I was fighting for life in intensive care (distraction from the horrendous things happening to me).  Suddenly I've ended up back in the midst of depression.  I've had input from the crisis team, and now I have a CPN again, and a re-referral to the psychiatrist.

This is not what I want!  This is not who I am supposed to be any more!  I'm so angry at myself for ending up back in this place and needing these people and services!  I had opted for life, but now it feels like all life has been sapped from me again, and I'm so cross that I've let myself fall back so very far, and worst of all is that I don't know how to get out of this.

Many have said, 'You've come through it before, so you can come through it again.'  That's not helpful.  It's really not helpful.  Last time I 'got through it' because I had a miraculous healing from God at 4pm on Monday 5th May.  My healing wasn't anything to do with me, or medication, or circumstances, or psychology, or psychiatry, or anything else.  The healing was from God and was instantaneous.  I'm not a fool and I know that not only can I not expect this to happen again, but it is incredibly unlikely to happen again.  The chances of it happening even once are minuscule, let alone twice.  I have no experience of coming out of depression in any other way, and as it was nothing that I did then I don't know how to get to that point.  I don't know how to get well, and that scares me.  And I feel so guilty because I feel as though God gave me that amazing gift of my miracle moment and I can't have looked after it well enough because here I am back in depression.  I've let God down.  I've let everyone down, myself included, but I am ashamed to have let God down.

Three and a half weeks (part two)

Physically, I began to mend from the asthma attack, but emotionally, I was very shaken.  I hardly slept for days, too afraid to turn the light out, have the door shut, or relax enough to let sleep take over.  I had at least to be able to hear the nursing staff or anxiety would swell inside me.  The events of the attack, of my time in A&E, EAU, and ITU played through my mind again and again. I repeatedly relived the trauma, and the lack of sleep meant I had even less energy either to fight it or deal with it.  I had a total of ten hours sleep in the first eleven days of the admission, many nights not getting any sleep at all.  'Tired' does not describe how I felt.  Neither does 'exhausted.'  It was torturous.  Even when I did manage to snatch a little sleep, I dreamt about what had happened and never awoke feeling rested.

Although still completely worn out and sleep-deprived, by the second Saturday of my admission I was beginning to feel a little better.  Not great, but my lungs were easing and I began to think that maybe it wouldn't be too long until I got home.  I was well enough to have the catheter removed, which had been in since I'd arrived on ITU, and a little after midnight on that Saturday/Sunday the nurse took it out.  It was a relief because I'd often been able to feel it in my bladder, lightly scratching my insides.

Catheter-free, I managed to drop off to sleep sometime around 2 am, but I woke again at 5 am.  I didn't feel right.  I got up and went to the loo - my first reclaiming of toilet rights - and then I knew that things weren't right.  There were all the signs of a UTI: pain, cramping, smelly urine, malaise distinct from the sleep-deprivation.  I told the nurse.

By 8 am I was getting cramping in my bladder and abdomen at times other than when I went to the toilet, and then I felt like I'd been punched in the lower back.  It was getting rapidly worse.  I needed painkillers.  I had very few inner resources to deal with the pain and I couldn't help but cry with the pain.  But that was nothing.  Within a couple of hours I was in agony.  Everything kept seizing up.  Spasms starting either in my bladder and working their way up to my kidneys, or starting in my kidneys and working their way down to my bladder.  The most intense pain I've ever had, nothing touched it, and all I could do was cry out in agony.  I was shivering with cold, but my temperature was up near 39C so the nurse removed my blanket, opened the window, and put on the fan.  She took a urine sample, sending some to the lab for analysis after dipping it on the ward first and finding that it showed 'very positive for everything that shouldn't be in it.'

I spent the next thirty hours or so crying out in excruciating pain, my body lurching from one spasm to the next, feeling like I had razor blades and ground glass in my bladder, and someone pounding on my back with a baseball bat.  I had a severe case of pyelonephritis.  The doctor started IV fluids and IV antibiotics, regular and 'as required' painkillers, and antispasmodics.  Nothing worked quickly, and all I could do was lie on my side calling out in pain.

Then the weird obsessions and hallucinations started.  First of all it became vitally important that I remember the name of the cat in the James Bond films.  I couldn't remember.  I had to remember. It was vitally important that I remember.  After hours and hours of racking my mind it came to me.  At least, I thought it had come to me.  I sat up and called out 'Odd Job'.  Of course, now I know/remember that this isn't the name of the cat, but at the time it satisfied my necessity to remember it.  Then I kept becoming aware that I was chuntering to myself.  I couldn't tell you what most of it was, though I do remember lying facing the wall saying, 'It's disgusting. Really disgusting.  Dis. Gus. Ting.

During the Monday I was sure there were two three-and-a-half-foot tall cockerels in the corridor.  It didn't surprise me and they didn't seem out of place, but they were really noisy.  They shouted out incessantly: 'COCK-a-doodle-doo!  COCK-a-doodle-doo!'  I've since worked out that this was some weird interpretation my brain was making of the nurse-call bell, but at the time it was two over-sized cockerels that wouldn't shut up.

That night I got scared, really scared.  I couldn't see it, but I knew that somewhere there was a mermaid for which I was responsible.  I was being told to feed it fish.  I couldn't do it.  It seemed wrong.  It seemed like cannibalism to feed fish to a mermaid.  I didn't know what the consequences would be of refusing to feed fish to a mermaid, but I decided that I'd have to bear them.  And then I wondered if mermaids actually did eat fish because, after all, big fish eat little fish, so maybe I would just be starving the mermaid for no reason.  The ethics of it all bothered me greatly, and I was afraid of what would happen to me for refusing to do what I was being told I must.  I was genuinely scared.  I know it sounds funny now.  I know it's laughable.  I know that it's ridiculous to wish that I'd seen 'The Little Mermaid' so I knew what Ariel had eaten.  I know all that now, but at the time I was afraid.  At the time it was far from funny.  And because I remember that fear and anxiety so clearly, the humour of it is detracted for me.

Although it was all very real, I gradually came to realise that maybe it wasn't quite right.  My brain felt wonky.  It was the high temperature and the toxins in my blood from the kidney infection, but of course I didn't know this then, and I was scared.

Over a period of days, the weird thoughts and hallucinations faded, and the pain began to ease a bit, but it was completely exhausting and I was drained.  I had nothing left.  I cried.  My tears didn't taste right.  No salt.  I still cried.  In fact I was so completely done in that I didn't have the energy to stop my tears.  I wasn't dead, but I wasn't alive either.  I was in a state of existence.  I have never felt quite like that before.  It wasn't like the feeling of existence in depression ... it was deeper, physical, entire.  Never in my life have a felt like I had absolutely nothing, that the only 'thing' I might have is God.  Never have I been so physically and emotionally crumpled that I didn't have the energy to hold myself before God and ask for his mercy.  I was entirely reliant on my friends to hold me up, to pray for me, and for God to see their faith and have mercy on me because of it.  I sent a text to friends at church asking them to pray, telling them, 'I need the strength of Lazarus when I have the strength of a worm with no wriggle.'  I was broken and crumpled.  I was a heap.  I had nothing and could do nothing.  I really didn't know if I had the energy to live, or if I did live, had I the energy to get well?  I lay in the bed, tears cascading down my face, trying to accept that I was completely dependent upon God's grace, knowing that I could offer Him nothing, and feeling completely devoid of anything.

Very, very, very slowly I began to surface.  A combination of the medications and my friends' prayers saved my life.  Again.  But recovery was slow, and it took a long time from there to get well enough to come home.  Eventually I did, but in truth I was still a way off being well.  I'm still not 100% physically, and I'm far off 100% emotionally.  I'm still exhausted, and I'm still not sleeping well.  If I'm honest, I feel traumatised by the whole experience, and it's perhaps more difficult because part of me feels as though I should be used to this kind of thing by now.  I'm not used to it.  I don't think I ever will be.

Reflections

I've been thinking about Nn's death, and whilst it's bound to have a significant impact on me I wonder if it's had more impact because it was suicide.  Death is a taboo subject in most of society, and suicide is even more so.  I'm going to talk about it here though, because not only has it raised itself in my life now, but it also had a significant presence in my life in the past. 

I suffered from disabling depression for many years.  I was drowning in an emotional sea of black treacle that sucked me down into its depths and so nearly suffocated the life out of me.  I spent a significant amount of time in my twenties in hospital with depression, and to be honest I didn't believe that I'd ever be free of it.  I wanted more than anything to be 'normal', to be happy, but the more I wanted these things the less achievable they seemed to become. 

I self-harmed.  Actually, I started to self-harm (si - self injure) when I was in sixth form, though I always hid it as much as I could, but as I got older and the si became worse it was impossible to hide from everyone, because it was too severe to patch up myself.  Very few people understand self harm and think of it as attention-seeking behaviour.  Perhaps it is for some, but not for me - I never wanted others to know, and I hid it as best as I could, but when the cuts wouldn't stop bleeding or were too severe and deep for me to manage I had no option but to go to A&E or my GP to get sewn up.  No, for me si was a huge mix of things.  To a certain extent it was about tantalising death - I didn't care much if I lived or died (and later I definitely wanted to die), and venturing that close to arteries, tendons, bones, ligaments, etc was almost like letting fate decide.  But ironically, si was often also about survival.  I hurt so much and so deeply in my soul.  The only thing that told me that I wasn't physically dead was the emotional pain I was in.  Oddly, I often didn't feel the physical hurt of cutting myself until sometime after I'd done it, and then it was almost a relief because it was a different kind of pain, a tangible pain, something I could see and was justifiable.  If I hadn't cut I would've imploded more entirely, I'm sure.  Contrary to the 'tantalising death' thing, si was also almost the opposite of death ... it let the edge off the agony and stopped me from killing myself ... a kind of letting off steam from the pressure cooker... 

I don't si now.  I haven't si-ed for 8 years.  The last time I cut/si-ed was 22nd April 2003, though of course I will always bear the scars.  There's nothing I can do about that, but I refuse to be ashamed of them, and whilst I hid the wounds at the time, I refuse to cover my scars for the sake of others now.  If people don't like what they see then they don't have to look, but I have to live with the scars everyday, and if I allow others to make me feel ashamed of them, then I'm allowing others to make me feel ashamed of myself.  There is a stigma to mental illness and depression, but there oughtn't be, and I won't, if at all possible, be ashamed because of the depression I've suffered from in the past, or the actions that depression led to.  Depression is horrendous enough without adding extra guilt into the mix.  So yes, I have the scars, and whilst I don't flaunt them (I'm not proud of them either - they're just a part of me), I don't hide them away unless I want to, and yes, there are some situations in which I will do that for myself, and sometimes for my mother as I know that she can sometimes find it difficult.

Self harm so nearly wasn't enough to keep me alive though, and for a long time I was intermittently suicidal.  For years, in fact.  It reached a head in 2002/2003, during which time I took several overdoses (very significant ones, far removed from any category of 'a cry for help'), and tried to hang myself.  That is where I feel a particular connection to Nn in his final act.  Unlike Nn, I was found just as everything was going black and disappearing into a haze somewhere beyond the sound of the familiar wheeze of constriction, this time from strangulation rather than asthma, but the same sound nonetheless.  Despite being in hospital with depression at the time, I hadn't expected to be found until after I'd succeeded, and I was distraught when I realised that I hadn't succeeded.  Nn was in a different physical situation from me and had no interruption, but I do know something of what he experienced in those last minutes of his life, and that has made me reflect a great deal on his death, his life, my life, my past depression, my subsequent fights for life through multiple asthma attacks, the whole complicated thing of 'life'.  It fills me with such huge sadness that Nn felt such despair that he chose to kill himself ... and I remember the despair I felt myself when I was suicidal.  I remind myself that this is remembered despair, not the feelings of today, and I remind myself of the fantastic moment of miraculous cure.

You may not have seen the list of 'Facts about me' near the bottom left of this page, but there's a fairly random list down there of snippets about me.  Third on the list is, 'at 4pm on Monday 5th May 2003, walking down one of the grimmest streets in Newcastle, I experienced a miracle.'  This was at the height of my suicidality.  My world had been the deepest, darkest shade of black imaginable for what seemed like forever.  I couldn't remember what it was like to live in a colourful world, or to feel that I was doing anything beyond existing.  I had no hope of anything ever changing.  At the time I was being desperately let down by the mental health services, who I believe were actually making my situation worse, and I was so nearly, so very nearly successful in my suicidal acts.  And then 4pm on Monday 5th May 2003 happened.  Nothing had happened to change my world; no event had taken place; nobody had said anything or done anything; no change had been made to medication; but suddenly everything changed.  I was walking down Westgate Hill in Newcastle, which several years earlier had been voted the 4th grimmest street in the country (what an accolade!), when I suddenly felt something I didn't recognise.  It worried me that I didn't recognise what I was feeling, and the worry caused me to glance up from my fixed focal point of the grey pavement just ahead of my feet.  The grim street was still shades of grey, but the grey buildings were topped with bright red tiles and looked over by an intensely blue sky.  My eyes hurt with the colour.  It was like regaining sight after years of darkness.  It was astounding, astonishing, amazing.  And that feeling, it was becoming more overwhelming.  What was it?  It was the feeling of being alive!  I wasn't just existing, and I wasn't in a monochrome world any more!  I was alive and living in technicolour!  I texted my mum.  I texted that for the first time in years I suddenly felt alive!  I have been alive ever since, never having returned to those depths of depression.  Sure there are low times, especially after near-death experiences, or other significant events, but they're different from depression - they're normal responses to difficult circumstances/situations/events, and they don't last.  Monday 5th May 2003 was my rebirthday, a miracle day.  I was a Christian before this wonderful event, for many years before the event, and I never stopped being a Christian throughout my depression, but I felt forgotten by God.  I felt as though I didn't matter, and questioned why I felt that I should matter as there were so many other, much more important things going on in the world, but it saddened me that I didn't matter even to God.  And then God showed me that He hadn't forgotten me, and that I was as important as anything else on His 'to do' list, and that He really is there even when we think He's busy with something else.  I don't think anyone ever expects a miracle to happen to them.  I certainly didn't.  I feel incredibly privaledged to have experienced a miracle, and for it to have been so completely life-changing ... life-giving.  I wish with all my heart that Nn could've had the same miraculous event occur in his life.  I am so thankful that God stuck his oar in when He did with me, saved me from myself, from my suicidality, and gave me colour and life again.  It's just over 8 years ago that it happened, but I remember it as clearly as if it happened today.  It still fills me with awe, I still get excited when I think about it, and I know that I am truly blessed.

Hogmanay

As you know, I came up to Edinburgh to spend Christmas with my mum and step-dad. We had a lovely Christmas day together with delicious food (thank you Mum), quiet times, lots of wonderful presents, jolliness, crackers, relaxation, Christmas tree lights, carols on the CD player and record player (yes, a record player!), and even a few on the piano from Mum. It was lovely. Very relaxed. Boxing day was equally gentle, with my friend O coming round for tea and cake in the afternoon, and it was all very lovely. And then I started to feel a bit itchy scratchy in the throat and had a little cough beginning, but it wasn't too bad so I got on with it and thought it'd sort itself out soon enough. Monday came and I was feeling a little off colour, but nothing very precise - coughing more, a little snuffly, sneezing a bit, a tad under the weather - and I thought I was probably okay for going to the theatre to see 'The Secret Garden'. I'm glad I did. It was fantastic, and the only sadness was that there weren't more in audience.

Monday night was a bad night. I coughed and I spluttered, and I wheezed, and several times I considered waking Mum and J to suggest that I maybe get checked out at A&E. I didn't though, and eventually I got a very small amount of sleep, but I felt rubbish when I got up and soon decided that I should probably call NHS24 for some advice as my breathing was getting worse and my parents' GP surgery was closed for the Christmas break. It took a while to get through, but I did eventually get to speak to someone who went through a whole list of questions about my symptoms, some of which were fairly obvious, like the wheeze and shortness of breath. Then he said that he'd ask me some other standard questions, and question one was, 'Are you conscious and breathing?' !!!! Um, yes, you've been talking to me for the past 5 minutes, and although I've been struggling somewhat, I have been talking back to you, which kind of suggests that I am both conscious and breathing in a fashion. Question two: 'Are you short of breath?' !!! Er yes, the give away to that ought to have been the fact that I couldn't speak in full sentences and was wheezing down the phone. He seemed alarmingly surprised when I said that I was indeed short of breath. He put me straight through to a nurse, who was much more sensible, immediately said that she could hear that I wasn't too well and organised an urgent appointment for me with the doctor at the out of hours service at the Royal Infirmary at Edinburgh (RIE) for 25 minutes time, although she kept saying that if things got any worse then we were to call an ambulance. We didn't call an ambulance, but we did make our way straight to the OOH appointment, where I was seen very quickly. I wasn't even in the room before I was being told that there was little they could do for me and they were going to scribble a quick letter before sending me up the corridor to A&E. Soon enough I was attached to high-flow oxygen, a porter was called and a nurse was escorting me in a wheelchair to A&E, whereupon I found myself being rushed into resus under the care of the A&E consultant. I was going downhill, and it seemed to be progressing relatively rapidly. The A&E consultant didn't leave my side, the respiratory team were called, the ITU team were called, I was swabbed for swine flu just in case, although nobody expected I'd have it as I was vaccinated back in October, but it was routine procedure now for all asthmatics presenting at A&E to be swabbed.

I was scooped up and whizzed along to HDU as I wasn't getting any better. In fact I was getting a little worse. And then I got much worse, and a couple of hours later my mum was being called back to the hospital as I was being moved into ITU where they were fully expecting to ventilate me. To be honest I'm not entirely sure why they didn't, and I was so exhausted that I would almost have been thankful for them to do so, even though I knew there'd be no guarantee that I'd get off the vent if I went on it. I fought on. I started to wretch terribly, although nothing came up as I'd hardly eaten for 48 hours, but still, uncontrolled wretching is not fun and it's even less fun when you can't breathe to start with. And then my temperature rocketed up to 40C and I still couldn't breathe, and the aminophylline was taking a heck of a long time to do anything. And then my swab results came back and it transpired that I did indeed have swine flu despite the vaccination, so I was whisked into isolation where anyone who entered the room had to cover themselves in an armour of apron, gloves and face-mask, and despite it being intensive care, they all had to leave the room when I was on a nebuliser because of the risk of aerosol particles of the virus being blasted through their armour. Instead they watched me through the window until the nebuliser was finished and then came back into the room to do all the intensive care bits that they do. And oh my god, then the pain. Not just aches, but fire. My muscles were on fire. I was in tears, which again didn't help the breathing, but I couldn't help myself, and through the fire was intense ache. My toes ached. My little fingers ached. My skull ached. The roof of my mouth ached. I was still wretching. My temp was still sky-high. My breathing was rubbish. I thought I was going to die. I didn't. Slowly, ever so slowly, my breathing eased just a little, and then a little bit more, and then they did an aminophylline level, which came back showing that I was at the very top end of the therapeutic range, beyond which it is toxic. They had to reduce the dose they were giving me. I appeared to be doing okay so after two nights in ITU I was moved up to the respiratory ward, whereupon I rapidly declined, and within a matter of hours my aminophylline levels had zipped right down to the very bottom of the therapeutic range, and the drug was basically doing nothing for me any more. The Registrar did an Arterial Blood Gas (ABG) and upped the aminophylline infusion again. The gas came back showing a pO2 of 9.7 so I was given more oxygen. Soon afterwards another ABG was done and my pO2 was at 9.2, with my pCO2 rising to 4.9 (still within normal limits, but not good in asthmatics with a falling pO2, and the fact that it was rising was concern enough). The doc was trying to give the aminophylline a chance to get back up to more therapeutic levels, but it was taking too long and the next ABG showed my pO2 had gone down to 8.7 and my pCO2 was 5.2. The Reg said I was in respiratory failure and that I would be going back down to HDU. I was scared. It was the middle of the night and I was on my own so I texted some friends and asked them to pray for me whenever they picked up my message. Several texted straight back saying they were praying for me right away, telling me they were with me in spirit and holding my hand even though they were over 100 miles away. I felt their love. I was sure I was going to die, and I practically resigned myself to it. I kept feeling the fight slip from me. I was exhausted. I hadn't slept in five nights and all that time I'd been desperate for breath. I was ready to give up. My family and my friends weren't ready for me to give up. I prayed for God to do whatever was in his plan for me, and there began an almost physical battle to keep the word 'fight' going round in my head. I wanted to fight, but I also didn't want to fight. I had to fight. I fought. Another two days and nights of no sleep; complete exhaustion; and a week in critical care. New Year's Eve spent gasping for breath and clinging to life by a whisper. A hug from a nurse. A taste of shloer. A tear.

In the end I was well enough to leave HDU again and come back to the respiratory ward. Still wheezing. Still short of breath. Utterly exhausted. Desperate for sleep, for critical care is one of the noisiest places in a hospital, and lack of breathing isn't condusive to rest. Put in a room with three other patients with swine flu. All of us behind a closed door through which only masked, gloved, and gowned staff enter, and visitors come at their own risk. Visitors do come though - my mum, my step-dad, some wonderful friends I've met through the Open University, along with a friend travelling back to Aberdeen from Newcastle.

I sleep. I feel overwhelmed by all that has happened. I feel so very loved by my family and friends - those who are here and those who hold my hand at a distance. I am impressed by the care I have received throughout my travels around the hospital, and I know that I am safe in their hands, which is so important as it means I can relax and get on with trying to get better rather than worry about what they may or may not do. The staff have all been wonderful. The medical care has been fantastic. They have, I'm told, been in touch with Dr H to let him know what's been happening and say they'll probably call him again on Monday to give a progress report. They've asked me all the way along the line what I need, what works for me. They tell me to tell them what I need as I know my disease better than they do.

The water retention is bad again, which was a problem when I was down in HDU and they started to dry me out while I was there because they were concerned that my lungs were beginning to sound wet and they worried about me developing full-blown ARDS or SARS. My lungs are still groaning, but the main water retention problem is in the rest of my body now, which is very uncomfortable and sore so they're giving me diuretics twice a day to try to help sort it out. I'm not getting very far with it as yet, but I'm still attached to the aminophylline infusion at full dose and I can't move far off the bed so my mobility is very limited and that's one of the natural things that's most likely to help. The plan is to start reducing the aminophylline on Monday (they're reluctant to do so over the weekend when staff numbers are down and they've seen how quickly I can collapse), so hopefully I'll be off the drip by the middle of next week and able to start getting some mobility back and that'll help shift the oedema.

They reswabbed me the other day for swine flu to see if the Tamiflu had worked. It hasn't. I'm still positive so although I had a seven-day course of it, and the usual is five days, I'm back on it for at least another five days. At least my muscles aren't on fire any more, even if they do still ache sometime and my body feels like it's been put through a grinder, and my lungs are still gurgly.

This has been a horrible time. I feel rather shell-shocked. I feel overwhelmed and yet simultaneously oddly underwhelmed. It's going to hit me full-force when I'm home, I think. At the moment I'm still in the 'getting on with it' mode that is necessary for recovery.

I'm supposed to be going on holiday for a week with my good friend O next Friday. We're going to Lancashire for a week of relaxation and writing. It seems unlikely that we'll manage to get there on the day we're supposed to be going, but I'm definitely going to need a break after this, and I've missed out on so much over the past year that I'm damned if I'm going to miss all of this holiday with O. We've both been looking forward to it for ages. We will get to some of it. We will. We will have fun and enjoy each other's company. We will write. We will not spend any time with flying pigs, or eat pork scratchings, and I will get rid of this curly tail and snuffly snout.

2011 can only get better.

Water balloon

I have swollen up with water retention again, pretty much as I did last time I was in, and like last time it's sore and uncomfortable and miserable. Unlike last time, the doc has been very reluctant to prescribe any meds to help relieve the water retention, so while I've been telling them for at least a week that I was starting to swell up, nothing has been done. I asked them for some furosemide, but I was told that nature would take its course. Nature refused to take its course. I asked again, but I was told to try to move around more and that would help. I moved around more, and walked on the spot in my room on my own for as long as I could comfortably go and for longer. Moving around more didn't help. I have continued to swell, and the fluid has gathered once again mostly around my hips and waist, and I feel like a balloon that's about to burst, and my skin is sore and stretched and nothing is comfortable. I asked again for some furosemide to help, but I was told that they were reluctant because I'm on so many meds already. I can understand that to a degree, but not when I'm so uncomfortable that I want to cry. And the stress built up, and the whole damn lot just got too much to contain, and the water burst out of my eyes in a torrent of tears and pleading, and desperation for something to help get rid of the swelling. I was told that in their opinion my feet looked a little better today. That's because it's all around my middle and my hips and my waist...except that actually it's all still there in my feet too, and I hurt and I'm bursting, and my body is going to pop and my skin is going to snap, and I'm sore, and I'm crying, and I don't understand why they won't give me something to help. I was given furosemide last time and it did me no harm; in fact it helped, as it ought. Why so different this time? What is the reluctance? What is the problem? Why don't they give me a reason? Apparently I have to understand that there's a hierarchy of doctors and that if the more senior doctor doesn't want to prescribe the meds I'm after (for whatever secret reason) then the junior doctor will not take any initiative in doing what is actually necessary for the patient's welfare. Okay, so I understand there's a hierarchy. I understand that junior medics have to play by the rules of their seniors. I don't have to accept the lack of reasoning for the 'action' being/not being taken. I don't have to agree with the decision. They don't seem to have to see it from the patient's point of view; and God forbid that they should see real patient distress in discomfort as reasonable. And no, this is not my usual experience, and no this is not my all-encompassing opinion of these people and their attitudes - it is my experience of them in this instance, in this situation, when I'm sore and stretched, and I'm tired and fed up, and I'm drained by the cycle of illness. It may 'only' be fluid retention, but it's just all a bit too much, and sometimes it's the seemingly small things that tip the balance from coping to emotional melt-down. Today I reached melt-down, and I cried, and I cried, and I lay in the darkened room, and I cried, and I hid under the sheets and I threw my dressing gown over my head, and I cried. Then I cried some more, and I felt wretched and I wanted the world to disappear, or me to disappear, and I wanted to stop hurting, and I still want to stop hurting. And I want illness not to be a part of my life, the major part of my life, the pivot of my life. I want to be normal, not NFB - Normal For Becky. And I'm fed up and miserable and wallowing in self-pity. And I cry and I weep and I feel lonely and miserable and as though nobody in the whole world possibly understands what any of it is like, particularly not these doctors who's knowledge of all these things is most likely through the pages of their text books rather than personal experience. And today I feel like an experiment that's gone wrong, but is still rather interesting to watch in some odd way. I don't want to be an experiment. And I have cried, and I have exhausted myself, and I have cried some more, and I have wept through cyberspace to some friends, and they've let it be okay to be miserable. And I've covered my face in snot because I haven't got any tissues, and my friends haven't been disgusted by the snot. No, they've found a use for it - use it as glue and throw glitter on it. Make the mess a pretty mess. And I'm still enormously full of water and feeling like I'm going to burst, and I'm hurting and I'm sore, but I'm loved by my friends, and I'm calmed by my friends, and I'm held by their cyber hugs in a real warmth and the glow of cyber glitter and cyber snot, and the mess is still as messy as ever, but it doesn't matter because I'm held by their love when everything has just got too much.

The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.

And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.

And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.

Hurray!

Hurray! I managed to get through the chest infection without becoming a resident of my friendly neighbourhood hospital :oD It was a very close thing at time, and I suspect that if I hadn't had the spur of the christenings at the weekend to help me then I would have given in and gone in. Sometimes my stubbornness pays off though, and this time I got lucky :oD I was pretty ill for several days, but was thankfully just well enough to make the drive to Combermere Abbey in Shropshire, where we were staying, on Friday, and by the time Sunday came around I was feeling a lot better. I've still got some of that post-infection fatigue, which probably isn't helped by having gone gallivanting off round the country at the weekend, but the weekend was soul-reviving, and it was wonderful to see Oliver and Daniel again (and the rest of the family of course!).

I had what you might call an 'interesting' journey down to Shropshire. The traffic was heavy from the outset and it got a heck of a lot worse very quickly, taking me almost three hours to get from just Newcastle to York - a journey that should take under two hours! However, I should have guessed that it wasn't going to be straight forward when I got as far as Washington and saw a man standing on the wrong side of the railings on a bridge over the motorway. He was perched precariously, and was in such a position that if he'd jumped off the bridge the driver of the vehicle that would hit him wouldn't see him until he was in mid-fall. There wasn't anywhere I could stop immediately as it was a motorway, but I knew I wasn't far from a service station, and I knew that I couldn't risk doing nothing, so I drove the short distance to the services and thought for a second what to do. Although Washington isn't far from Newcastle I really don't know my way around and I had no idea at all how to get up to the bridge where this man was. I decided that the only thing I could do was call the police and explain the situation, so I did, and they seemed a little perplexed at first as to why I wasn't with the man or hadn't spoken to him, but once they understood that I was just a passing motorist on a busy motorway who'd seen someone looking actively suicidal they quickly got into gear, and before long I was in the company of a couple of nice policemen. The told me that other officers were on scene and thanked me for contacting them ... and then I felt a bit useless because I couldn't do anything else, and I don't know the outcome, but I'm guessing that he was stopped from killing himself and possibly others on the motorway as I didn't hear anything on the news ... not that I would've done while away in Shropshire ... It was all a bit surreal, and completely unexpected. It also brought back a lot of bad memories of times in my past when I was actively suicidal, but it was probably because of those times that I knew I had to do something, even if I couldn't get to the man myself. Being so depressed that you can see no way through other than self-destruction and suicide is one of the worst chronic experiences I think there is (though I'm sure some will disagree and suggest other things). I sincerely hope that whoever the young man was he is getting the help he needs.

After all that it didn't seem to matter so much that I was stuck in traffic for hours on end - there were worse situations I could've been in - though it was tedious. The journey as a whole should've taken a little over three and a half hours, but it took almost six and it was pitch black when I stumbled across Combermere, and I'd have missed the turning if it hadn't been for my sat nav. Anyway, I eventually made it and met up with various aspects of my family :o)

The whole weekend was lovely, the children are wonderful, and the baptism was delightful, even if the vicar was a little odd. Regardless of his sexuality, he was incredibly camp, and I wasn't too sure about some of his theology. When we were gathered around the font at the back of the small, country church, he said, 'The font is like a big washing up bowl. God is the Fairy Liquid.' Er ... riiiiiight. He took hold of Daniel (6 months old) at arms length, failing to support his head in any way at all so Daniel looked most uncomfortable and was straining to keep his head up, and the priest then proceeded to pour the water not just over Daniel's head, but into his eyes ... twice. I can confirm that this combination of circumstances is recipe for a screaming child. Oliver (2 years old) was next, except the priest reached out not for Oliver, but for Ollie's cousin, Gemma (18 months old). My brother and sister-in-law steered him towards the right child and Oliver was almost dropped into the font head-first. This didn't bother Oliver though, and he spent the whole time giggling and thoroughly enjoying the experience of baptism :o) In fact he seemed to have an altogether lovely time ... except for when the priest accidentally kicked him over on his way back up the aisle at the end of the service.

On Monday morning, when Mum, J and I had packed and vacated the cottage we'd been staying in, we went over to where my brother and his family were staying so that we could help them pack and/or distract the children. Daniel was fast asleep and looking ever so scrumptious when we arrived so no job to be done there except keep an ear out for him waking. Oliver, on the other hand, needed a bit more occupying so we took it in turns to play games with him, or help pack things up. Ollie had clearly loved 'his party' the day before, and summed up his weekend when he ran between Mum and J on one sofa and me on an opposite sofa, throwing himself at us with his face covered in smiles, and calling out, 'Happy people! Happy people! Happy people!' Utterly delightful!

With thanks

Less than an hour after writing my last post I was in dire straits and had the paramedics coming for me. The speed with which I deteriorated was startling, and within 10 minutes my peak flow dropped from 100 to unrecordable. I'd had a couple of friends on stand-by for a few days for when I needed to go in, so I called them and even though one of them was in bed asleep they both came round straight away and were here just before the paramedics, who themselves arrived very quickly. My friends N and J hadn't seen me in quite that state before so I think they were a little shocked, as were the paramedics, who I have to say were brilliant, got me straight into the ambulance where they tried to cannulate me, but with my veins being so overused they didn't actually manage to get one in, but they did give me subcut adrenaline in the hope that it'd help. Unfortunately it didn't help and I think I was actually a little worse by the time we got to the hospital. N sat in the front of ambulance with one of the paramedics on the way to the hospital and was told that the crew had been on all weekend, and although it was by then Monday, I was their first call who wasn't a drunk! Apparently they said that my call had made them feel like they'd done something worthwhile and reminded them what the job was all about. How awful that paramedics can be made to feel like they're not worthwhile and are used as a taxi service for people with nothing wrong with them other than the consumption of too much alcohol. I am so very thankful that they do the amazing work that they do.

When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.

I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.

So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.

So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.

Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.

I'm thankful that I survived again, however tough it was.

I prophesy

Okay, maybe not, but I was right that my lungs were going off and I didn't have long left before an admission.

After my last posting here I had a terrible night and gave up on trying to cope alone not too long into the morning of the next day, and I pressed the Big Red Button (the community care alarm). Although there have been several occasions when I really ought to have pressed the Big Red Button, this is actually the first time that I have done so, and I have to say that I was terribly impressed. After my alarm had remotely dialed my phone to the care alarm base, and the rather bored-sounding man who answered realised that this wasn't a test call and that I could barely speak to him, everything happened very quickly. He immediately called the ambulance, who arrived within 4 or 5 minutes of my having pressed the Big Red Button, and was very closely followed by the community care alarm warden. She mainly looked on (and looked worried) while the paramedics did their thing (and who also said, 'We're not going to stay and play; we're going to scoop and run', which is phraseology I've heard of, but never heard said in the situation it relates to), but she did go on to keep the people at her base informed as to what was happening. So yeah, the Big Red Button system works and I'm impressed.

The lovely paramedics (unusually, it was two women, which was rather nice) phoned my usual ward to see if they would take me in crisis even though it was a Sunday, and thankfully, as it was morning there was a doctor on the ward doing rounds so I was able to go there. Oh yeah, and it also helped that they had a spare bed/cubicle for me (I have to have a cubicle, because I have the company of Mrs A). It is so much better when I can go straight to my usual ward, rather than having to battle my way through the emergency admissions procedure of A&E and/or EAU, and the ferrying around the city by ambulance that goes with that. It may be a good system financially, but it is not conducive to healing, because you can't settle in one place and you never know whose looking after you or how long you'll be somewhere. Also, if like me you have a condition that doesn't exactly follow the text books, it can be frightening having your life in the hands of people who don't know the complexities of your disease and who may, or may not, pay attention to what you say about what helps/doesn't help. Most medics are fine and are more than happy to take note of what I say, because they know that I've dealt with many crises in my health before, whereas what they are seeing may be the first crisis of mine that they've seen. However, I have had some experiences of 'doctor knows best', some of which have been stupidly dangerous to me, and have consequently knocked my trust. Anyway, this time there was no need to worry about any of that, because I got to go straight to my second home, where even if the doctors are new (they change every 6 months), the nurses have known me for years and will fast kick any pompous young doc into line if they think that I'm not getting what I need.

This wasn't the worst attack I've ever had, but it wasn't the least significant either, and it took a long time to settle - somewhere around 35 I think. Even after initial settling it always takes time for my lungs to really get their act together, so whilst I may not have been desperately fighting for breath after the first 35 hours, breathing still wasn't an easy 'do it without noticing' thing for several days. However, I eventually came through it and I had my usual big sleep - 2 days - and then I began to feel a little more alive. It's always good when you realise that you've survived and that you will have more days ahead of you to make the most of. It can also be a bit ... what's the word ... um ... ground-bumping when you think about how close you were to not making it through, which is why I always have a day of feeling miserable after an attack, even though I'm pleased to have come through it. I'm sure there's some emotional logic in that somwhere.

I don't want to go into all the events of the couple of days prior to this splat, because it could contravene another's privacy, but I will just say that they were very stressful days and totally exhausting. On the Friday night prior to the lung splat I had practically no sleep at all, and then I was busy all day on the Saturday with the same stressful situation, all the while feeling increasingly unwell. Then, as I said before, the Saturday night was very sleepless, this time due to my lungs not doing their breathing thing very well. By the time it came to the splat I was so exhausted to begin with that I truly doubted I had the energy to get through it ... I was scared. I had one of my priest friends, C, come and sit with me for a couple of hours during the battle for breath on the Sunday night, and he really helped calm my fear, even though my breathing was no easier. I knew that he, many of my friends and those at church were praying for me, and you know, I'm sure that it's only through their prayers that God gave me the energy to survive this time, because I really didn't have any reserves of my own to draw upon.

Let me tell you something ... When C came to sit with me in those long dark hours of breathlessness, there was a point at which I was thinking about the prospect of death and of dying and of how that made me feel. I had this kind of image/picture of standing in darkness almost alone, except for a small, wizzened man/being/creature standing feet away from me. He looked me in the eyes and I knew it was the creature of death even though nothing was said. We both stood looking at each other and I could feel myself getting weaker with his gaze, but he made no movement towards me. It seemed that he had unlimited patience and that he was waiting for me to reach out to him, and only then would he step forward, though there was a hunger in his eyes for me. I was afraid of him and the darkness and the isolation that we were in together ... and then another being, a bigger being stepped between us. This was God. I knew it, though nothing was said. He had his back to me, but I knew this being was gentle, and although no words were actually spoken some words did move in the air, and they were 'Not tonight.' Although Death was standing there patiently waiting for God to step aside, God's patience was/is infinite, and with the words of 'Not tonight' slipping like silk through the air, Death eventually turned and walked away. From then on my fear for that night left me, even though the battle for breath continued.

It's not easy to see, but there can be beauty in the darkness.

Lent

We are almost three weeks into Lent now (the six week lead up to Easter). As my recent hospital admission began the day before Lent (Shrove Tuesday - I missed out on the pancakes too!), and I was ill at home for several days before that, I didn't have the chance to properly consider what I may give up/take up for my Lenten promise. I appear to have given up health (and sleep), which wasn't a deliberate decision and not one that I think God would be wanting me to keep to. Despite being nearly half way through Lent already, I do feel that as a Christian, I have an obligation to take up a Lenten promise, even if it's only for the remaining period. However, I'm having great difficulty in thinking what this could be, and also feel that my options are somewhat limited ... though perhaps this is a misconception. You see, I could give up something foody, as many do, but my extensive and diverse severe allergies already limit my diet, and whilst I can and do eat as healthily as possible, it is important to be able to keep a balanced diet. I'm sure there is something I could do without ... like Green and Black's 70% chocolate, but while I'm having such difficulties with the workings of my GI tract it quite probably wouldn't be good for me (by further reducing possible nourishment, which is already depleted by the nausea and pain), and also wouldn't be much of a hardship as the aforementioned nausea and pain are already reducing what I eat.

Other than giving something up for Lent, many take something up instead ... but what? My instinct - or perhaps it's a nudge from God - is that I ought to devote more time to prayer. Because I am a Christian I really should be praying everyday, but I'm ashamed to admit that I don't. I do pray frequently, but I don't have a routine in which I have a specific time that I dedicate to God.

It is quite possible that I have just found/admitted to what my Lenten promise should be.

Now as, on the whole, I don't know who reads this blog, I don't know how many of you are Christians or have any understanding of what Christianity is about other than Jesus being involved in it, and he was a good bloke who was born in a stable at Christmas and died on a cross at Easter time. Because of this, I feel that I ought to explain something of what this Lenten promise I've been talking about is for ... though I'm no religious leader and consider my faith to be relatively simple, so it's not going to be very in-depth. So here goes my attempt to explain something of this.

As a Christian I believe that Jesus was the mortal embodiment of God - God made into man to come and walk among us. This can seem a bit complicated when you also begin to consider Jesus being the son of God ... but both are right and true. Now then, in the 40 days (6 weeks) leading up to Jesus' death he had a rough and testing time, to say the least, suffering isolation; temptation by the devil to save himself and betray God; desertion and betrayal by friends (apostles); humiliation and degredation; the knowledge of his impending death (that on it's own can't have been easy); and ultimately the torture of crucifixion. Why on earth did he do this? For us, for everyone, for every single person in the world and for all of those to come. He did this so that we - all of us - could be closer to God, could be saved from sin and the devil, could be cleansed of all our wrong-doing. That is altruism beyond altruism. When Jesus died, and in the lead up to his death, he felt every single pain of the suffering we would if we were to go through it - both physical and psychological - because although he was God, he was also a man, a human. What pain, what suffering, what torture to endure.

Jesus gave up everything. Jesus gave up his life. This was for us - you and me and those before us and those who will come after us. What do we give up? Chocolate, crisps, things that are bad for us. It's no comparison, is it? We do those things in part for our own benefit and well-being, when really the history of it shows that we should either give something up that would benefit someone else (maybe by giving up our time for people in need), or that we should take up something that will reflect something of the burden that Jesus took upon himself for us, or the dedication of his love for us. Whatever we do, it should be God-centred. It should be significant. It shouldn't necessarily be for our own gain, but for the gain of others and for the rememberance of Jesus. Tough? Yes, but not as tough as what Jesus did.



I don't often write about my faith, as you will know if you've read the rest of my blog, but sometimes I have things I want to say about it. They may not always be 'right', but they are my current understandings. I make myself vulnerable to you by sharing these things with you, but I make no apology for telling you something about my beliefs - they are intrinsic to who I am and they way I try to live my life.

ITU

This is an immediate follow-on from the previous post, and it's an extract from one of my hospital diaries. I'm going to be reading it out in my talk tomorrow as an example of what it's like to need to go to intensive care ... and the fear. It is taken straight from my diary as written, with no alterations.

'Some people don't understand why I'm reluctant to go down to ITU. Can't they comprehend the fear? Can they not understand that going to ITU is terrifying, because you know that they're running out of options to keep you alive? I know that's why they want to take me - to keep me alive - and I understand that at the time too, but it's horrible and the things they do to monitor you are painful, and all the time all I can think is that I want to go to sleep and I want to be alive, but I can't have both those things at that one time unless I deteriorate that little bit more and they put me to sleep ... only then there isn't the guarantee that I'll be alive when I wake up.

'Desperate for breath. Desperate for sleep. Desperately trying to stay alive. Trying not to panic. Trying not to cry. Trying to get comfort for my fear from those around me who cannot assure me that everything will be alright. The best advice they can give is that getting upset can only make my lungs worse, and they will do all they can for me. Breathing is hard, lungs hurt, interventions to monitor are painful and obtrusive, fear grips as medications fail to help, nurses try to comfort and get the SHO, who looks afraid and sends for the registrar, who is obviously concerned so calls the consultant, who knows he can do no more here so contacts the anaesthetist, who comes in a swathe of green cotton and a small entourage behind, and they all look worried and take me downstairs to be prodded and poked and have more monitors stuck on me and needles into me, and it doesn't matter where they go, or how much it hurts to get them in, they just have to do it to keep me from dying. All the while I'm surrounded by all these people I'm completely alone, because I can't breathe enough to tell them I'm scared. I plead with my eyes for them to help and for them to stop, and I know it's a contradiction, but I want both those things simultaneously. Death doesn't frighten me, but dying is horrendous, and feeling alone whilst dying is terrifying. Maybe one day I'll be ready for it, and not in a way that is just exhaustion and the inability to keep on fighting, but right now I'm not ready.



'God's in it all somewhere, I know that ... I just haven't figured out where yet.'

Requiem aeternam

I have some friends whose youngest son is now head chorister at Durham Cathedral, and last night I went with them to hear him/the choir sing Faure's Requiem in a communion service for All Souls Day. It was lovely, and amazing as the choir had only been practicing for a week. It was lovely to have the requiem as part of the service, rather than just as a concert as is most usual these days, and it was a great opportunity to think about those people we've known and loved, but have died. There was an opportunity also to light a candle in memory of those who have died so I lit one for my friend Laura who killed herself in July.

Laura was a truly lovely person, highly intelligent and incredibly gifted musically. She had so much going for her, but was sadly unable to see the good in herself and had suffered from terrible depression for many years. She was someone who would go out on a limb for a friend - she would do anything she could for anyone - but tragically was unable to see that she too was worthy (and more worthy than many in the world) of all the love, support, help and good things that came her way ... although she was continually let down by the mental health services, which did nothing for her confidence or feelings of self-worth. Laura is greatly missed by many, and I don't think she would have believed you if you'd told her before she died about how many people would attend her funeral and memorial service; about how the Laura-shaped hole that's been left in the world is gaping and cannot be filled by anyone or anything else; or about how many tears have been shed by so many people all over the world for the loss of such a wonderful and amazing young woman.

I hope and pray that Laura is finally at peace. I prayed with all my heart for her in the cathedral yesterday evening, and although some (non-christians) may say it was in my imagination or is wishful thinking, I felt as though Laura had at last found her peace and was at rest. If only she could have found that peace here on Earth ...

Rest peacefully Laura.