Defeated

It's ages since I've posted.  I haven't known what to say.  I still don't know what to say.  I don't know where to begin...

...I'm struggling.  A lot.

I went to an appointment with the psychologist a week past Friday, which was supposed to be an hour long, but turned in to two hours.  Basically, I am a mess.  The psychologist wanted to call the CAT Team (Crisis Assessment and Treatment Team - for people experiencing mental health crises), but I was extremely reluctant for her to do so as I'd had such an awful experience of them ten years ago.  At that time they made things much, much worse for me and I swore that I would never let them in to my life again.  It's an indicator of where things are up to that, after much deliberation, discussion, and upset, I was persuaded to let the psychologist call them.  She talked with them at some length, expressing her deep concern for me, and suggested that I be admitted in to hospital for a while.  They said they would come out to my home to assess me that afternoon.

The psychologist seemed very unsure about letting me out of her office, unsure that I would be able to 'keep myself safe.'  To be honest, I wasn't sure I could do that either, but eventually I agreed to do so long enough to get home and be assessed by the CAT Team.

The CATT arrived as a trio - doctor, nurse, and medical student - forty-five minutes later than they said they would be, which wasn't a great start, but the nurse was one I recognised from the ward when I'd been an in-patient with depression many years ago.  That helped me to feel a little more at ease as I remembered he was one of the better nurses.  I spent an awful lot of my time with the CATT in tears, much as I'd spent my time with the psychologist, and after quite a lengthy assessment the three of them went and sat in the car outside to discuss me.  When they came back in five minutes later they had decided to opt for home treatment with daily visits and a 24/7 'carer's line' phone number.  My feelings about this were, and have continued to be, very mixed.

These past ten days have been bloody awful.  I'm not going to go in to details, but suffice to say that I'm not really coping with 'life' at the moment.  I have a couple of 'big' things going on, but primarily I'm in a state of post traumatic stress from my recent hospital admission, and severe depression from the accumulation of traumatic asthma attacks (and some other things too).

I have come to a stand-still, defeated by all that has happened, unable to bounce back as expected, as I have done previously.  I am trapped, once again, by the monster of depression, and above all else, I feel as though I have let everyone down.  Myself included.  God included.  Especially God.

I am continually told that I'm strong, but believe me, I'm not.  I am now very, very broken and very, very weak.  It isn't helpful to tell me I'm strong, so please don't.  I need to be allowed to be however I am, and telling me that I'm strong makes me feel even more as though I've let everyone down because I know that I am so very broken right now.

Difficult

Hmm, I'm supposing you've guessed that I'm having a difficult time at the moment, that I'm not really coping too well.  Not a lot has changed since I last posted, and I haven't updated till now because I haven't wanted to bore you with the same old stuff over and over ... I reckon once in a while is okay, though, right?  So here it is...

I saw the psychologist a week ago.  As has always been the case with her, she was good.  It's never easy, and it's hard to say with such things that they're ever good experiences, but I think I've been lucky to be allocated the psychologist I have.

I'm not going to say anything about the content of last week's therapy session, because that's between me and the psychologist, but what I will say is that I was honest with her.  I had to be, and really, what is the point of therapy if you're not going to be honest with the therapist?  The session actually went a little over time, which is very unusual for therapy, but such was the nature of the session and of my need.

Two hours after my appointment with the psychologist I was due to see my GP, and by the time I got there my psychologist had already phoned the doctor to express her concerns.  She also tried to persuade the doctor to prescribe some sleeping tablets for me as I'm getting very little sleep and finding it incredibly difficult to get to sleep (it's more often than not at least 5am, and it's not unusual for it to be 7 or 8am before I get to sleep).  The lack of sleep is most likely contributing to my state of mind and general state of stress of at the moment, but the GP won't prescribe sleeping tablets of any description because all of them can suppress breathing.  She doesn't want to risk that with me, and tells me it's not worth it, and I can see where she's coming from, but I'm knacked.  I'm trying all the 'sleep hygiene' stuff, but it's not currently working for me, and I'm spending most of each night getting up after another 30 minutes of failing to get to sleep, sitting in the dark/dim light, doing very little, going back to bed, and failing to get to sleep.

So yes, the GP talked with me, but of course has no quick fix, or in fact any fix, but she's there.  The psychologist has been away this week, so the GP wanted to see me instead so that she could keep an eye on me/things with me.  I saw her yesterday.  Nothing much to report, but again, she's there, and it's probably a good thing that she knows the state of play even if she can't do anything about it.  As others have said, she too said that it's just going to take time, but she understands the complexities of my situation with recent events still fully to get my head around, and multiple factors around my health in general.  It's not about feeling sorry for myself; it's about coping with the challenges my health issues lay before me, the impact they have on my life, the way they've changed the course of my life, and how they continue to change every aspect of my life, always moving the boundaries.  Lots of things.  Too many things to try to mention, and perhaps I don't want to mention them simply because that feels like trying to justify them.  I'm not going to get in to that.

The psychologist is back next week, not until the end of the week, which seems like an impossible time away, but I suppose it'll arrive eventually.  In the meantime I have four other hospital appointments to get myself to next week, one of them at the ridiculous time of 9am.  Not so ridiculous if you have a normal sleep pattern, but if I don't get to sleep till 7am, then that'll leave me with about half an hour's kip.  I can only hope that the night before that appointment is better than anticipated.  To be honest, a week of hospital appointments isn't really what I need at the moment. I could do with some time trying to concentrate on things other than my health - or lack of it - but next week I have no choice.

I feel like I'm beginning not to make much sense or that I'm going round in circles.  Maybe it's more in my head than coming out like that on the 'page', but I think I'm going to have to end this post here.  Perhaps next time I post I'll be somewhere closer to myself, but apologies in advance if I'm not.

Strangled

I have so much going on in my head at the moment that I feel practically immobilised by it, strangled by it.  It frightens me.  A lot frightens me right now ... In fact, most things frighten me, but one of the things that really frightens me is that my words aren't working.  I mean, they're not coming ... I feel like I've lost the ability to express myself through them.  I make a mess of situations requiring words, which, let's face it, is most situations.  I can't explain my thoughts, my feelings, my opinions, anything coherently or in a way that actually gets my point across.  It's like the mess in my head is strangling the life out of my words, suffocating me in a different way from the asthma.  The only expressive language my body seems to know at the moment is tears, of which there are torrents.  Huge, uncontrollable sobs rise from nothing, suck my energy from me, and toss me out on to the devastated landscape of what was once me.  A tsunami.

I saw my psychologist on Friday and I wept throughout.  I have wept almost constantly since, except when I've had company, in which case I've somehow managed to put on the mask of sanity ... except, perhaps, that I may have clung a little too tightly and a little too long to the friend that gave me a hug.  An accidental give-away that all is not as okay as it may seem.  The truth was that I didn't want to let go.  I didn't want to return to the isolation of my mind.  I didn't want to relinquish the comfort of friendship's tenderness that touches the soul through a hug.

The contradiction, though, is that I don't feel worthy of that tenderness.  I feel as though most of what I touch at the moment turns to dust.  It is selfish to touch others when you know that doing so will destroy them, so most of the time I avoid it, even though I crave it.  I don't trust myself with their precious lives.

The time with my psychologist goes too quickly.  It is the only place at the moment where I feel that I can truly let go, not because others don't want to help if they can, but because to do so would be to make me vulnerable ... and to do so would be admitting failure ... to do so would be to let them down ... to do so would be to let go of the final thread of something that I'm hanging on to.  I said something of this to the psychologist.  She seemed to understand what I was saying.  She also said she's concerned about me.  Some others have said the same.  This puts me in a difficult situation - not the psychologist saying it, but others - because I feel as though I ought to reassure them, but with all honesty I cannot turn and say, 'There's no reason to worry.'

If I whisper this then maybe it's not like admitting it.  If I whisper this then maybe I'll have said it without anyone really hearing.  If I whisper this then perhaps it can pass unnoticed.  I will whisper it very quietly, but if you hear you must promise me not to tell anyone my secret ... I am worried about me.

I cannot tell you all that is going through my mind, that would be a step too far, but it is a tangled mess of knots that have been steeped in black tar and treacle.  There are some very sharp, and dangerous-looking things in there, and I wouldn't want anyone to get hurt by trying to touch them, so I will keep my distance for fear of accidentally harming you.  If I'm lucky they won't harm me too much either, but I'm not sure I'm destined for that kind of luck.

Did I tell you that I'm scared?  I think I did.  I am.  I'm very scared.  Many have told me I'm brave, but believe me, there is nothing brave about me.  This is not the mind of a brave person.  These are not the tears of bravery.  When told that I am brave it feels like it's the other person's way of saying, 'I'm glad I don't have to go through what you do.'  If I had the choice I can tell you with absolute honesty that I so wish that I did not go through what I do, but the truth is that I have no choice.  What is mistaken for bravery is actually a primordial instinct to survive - a very basic fight for life.  There is nothing brave about that.  To say that I'm brave almost strips me of my right to be afraid, because if I am seen to be brave then my fear - and more importantly to them, their fear - is overcome.  I am very afraid ... and I need to be allowed my fear because if I am not then I have no option but to keep running from it.  If I keep running then I will always be being chased by it, hunted by it, and as soon as I run out of energy (which is sometime round about now) it will destroy me.  It is only by being allowed my fear that I can begin to be able to face it, and then possibly, maybe, perhaps find a way to beat it.  Again, that is not bravery; it is basic human survival.

And now my words are sucked from me again.  Something, again, has strangled me, and I have nothing.

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.

Three and a half weeks (part one)

I am home.  It is good to be home, but I had such a horrible time and was so poorly that I'm also quite apprehensive about being home.

After writing 'Which way?' on 16th January I went to bed, but I didn't get any sleep because my lungs went steadily downhill.  At 6.30 am I knew that I was going to have to see a doctor, but I only worked this out when I realised that my primary concern shouldn't be that I had clean hair, and I shouldn't have been sitting in the bath with my head lathered in shampoo.  It's a strange state that my mind goes in when my oxygen levels fall and my carbon dioxide levels begin to rise, but at least this time I did recognise it.  However, unlike any other time, I then had a terrible, terrible feeling of foreboding and doom.  Although my peak flow still wasn't desperately low I knew that things were going to be awful.  I was sure that I was going to die.

With the certainty of death in my mind I didn't call an ambulance.  This probably doesn't make any sense to anyone but me, but I wanted to see a friendly face before I died so I called my GP surgery instead of 999.  I phoned at 8.30 am when my peak flow was still 130, and got an emergency appointment for 10 am, but I actually went up (in Noah - new powered wheelchair) at 9.30 am, by which time my peak flow was 100.  The doctor called me in fifteen minutes before my appointment time as I'd pointed out to the (new) receptionist that I couldn't breathe, and by the time I saw Dr Cg my peak flow had dropped to 60.  Ten minutes later my peak flow was unrecordable on a paediatric peak flow meter that begins at 30.

Dr Cg said he could still hear a little air getting in to my lungs, which was very good news, and hasn't always been the case (silent chest), but he wanted me in hospital as soon as possible.  He phoned my usual ward, but there were no beds so I was going to have to go to A&E and he phoned for a blue light ambulance.  So much for the eight/nine minute target time for getting to a blue light call - it took an hour for the paramedics to arrive!  During that time I used my nebuliser numerous times and was on oxygen, but the surgery only had one small bottle of oxygen and it soon ran out (they have since invested in a second cylinder).  Dr Cg called ambulance control several times to enquire about the ambulance, stressing that he had a known severe brittle asthmatic in crisis in his office who needed to get to hospital asap.  They had me down as a standard response!

The ambulance eventually arrived and I was loaded on-board, but was taken to hospital without any urgency.  We ambled through the traffic as though all was well while I gasped for breath in the back.  I have to say that this lack of response from paramedics/the ambulance service is a very rare occurrence indeed, which is probably why it surprised and scared me so much.  However, we did at last arrive at A&E, where the ambulance crew took me through to Monitoring, although I was only there for a matter of minutes before the Sister and doctor whisked me through in to resus.

I was given nebs and oxygen.  They had someone come down from the respiratory ward to put a gripper needle in my portacath and an infusion of aminophylline was started. I continued to deteriorate.  Only the medical student actually listened to my lungs, which shocked me somewhat, and no blood gases were done, but I knew I was getting worse and I knew I was getting tired.  An x-ray was done whilst I was en-route to the Emergency Admissions Unit (EAU), escorted by the resus nurse, which I was told looked 'fluffy' and is a sign of pulmonary oedema.  I presume this is a complication from the asthma, rather than a whole new thing to contend with.

I battled on in EAU, watching the world, seeing the world, feeling the world get 'thinner'.  My head was getting thicker, and as it did, it was like God was rubbing the world out from in front of me with an eraser.  I was being distanced from the world and losing the ability to take part in it.

And then a face - the face of one of the ITU Out-reach Sisters: 'I think she's getting worse.'  I think that I thought, 'she's right,' but actually I didn't know any more.  I didn't know anything other than exhaustion.

Snippets, that's what I remember now.  The junior doctor sitting at the desk with her colleague, almost in tears, saying, 'My patients are dying on me,' and pointing at me, then saying 'There's another one next door.'  The worried face of one of the ITU Out-reach Sisters.  Grabbing the hand of the ITU Out-reach Charge Nurse who I've met several times before and holding on so that I can get some life from him in to me.  Three different ITU consultants coming to assess me.  One of them - a woman I recognise from previous admissions - leaning very close to me: 'We're definitely taking you to Intensive Care, but there aren't any beds at the moment.  We're literally knitting you a bed as we speak.'  I think of a hammock.  Another of the ITU consultants is a short man who I also recognise and I realise he looked after my great friend Carol back in 2005 after she had a massive heart attack at age 42.  Carol died.  Then the EAU consultant who says my temperature is up, and notes that I'm tachypnoeic and tachycardic (breathing fast and have a fast heart rate), at 31 and 150 respectively.  He prescribes immediate IV antibiotics and more hyrdrocortisone (steroid injection).  Blood gases have been done and there's concern because I'm acidotic.  I'm shaking - it's all the salbutamol nebulisers that are doing it, and it's making me even more exhausted.  I can't stop.  I just want to sleep.  I am too tired.  I text my mum and tell her I love her.

All of a sudden I'm being whizzed along the corridor in my bed.  The two ITU Out-reach nurses (Sister and Charge Nurse) are there, the EAU nurse, the porter, the ITU anaesthetist, and lots of people standing back against the wall as I'm charged down the hall.  Faces, lots of faces, and they all look scared.  One looks terrified and then tries to smile at me.  I'm too tired, too poorly, and too afraid to smile back.  And one of the reasons I'm afraid is because the last time I was in ITU in this hospital I had the most horrendous experience that I don't really want to talk about, but it left me with no trust in them at all.

And then we arrive and it's a different ITU.  This is neuro ITU because there are no beds on General ITU, and my mind is eased a little, but I still wonder, wonder, wonder.

I'm taken through in to a room of my own - isolated because of my chronic MRSA positive status. Across the room to the right there's a window in to the main unit.  There's an elderly woman in the bed out there, all bunched up and contorted.  A woman I presume is her daughter is there.  She has brown hair and is wearing a red coat.  I can see the red.  The red is vibrant.  I am still just about in the world.

My room is full, at least it seems full.  Lots of people.  They lie me flat and slide me from one bed on to the other, then sit me up again.  They put the oxygen saturation probe on my finger and the alarm chimes when the machine records a reading of 79% (so I hear them say).  The anaesthetist has a gentle voice, calming, but his words are frightening: 'I really want to intubate you - put you to sleep and put a tube down your throat to breathe for you - but I think if I do, we'll never get you off the ventilator.  Have you had the tight mask before?  I want to try BiPAP because I think that without any ventilatory support you probably have a maximum of half an hour left.'  I nod, but I can't really process this information.  Half an hour left to live.  Half an hour.  Then dead.  I believe him because the world is disappearing.  I believe him because I am suffocating.  I believe him because I'm far too exhausted to keep on breathing.  I believe him.  Half an hour.

The Sister.  The doctor.  The nurse.  The anaesthetist.  They all put the mask on my face and strap it to my head.  Tight.  Tight.  Tight.  It blows air at me.  It blows air in to me.  It sucks air from me.  I still have to work hard, and I am so tired.

I look through the window to my right.  The woman with the brown hair and the red coat is still there.  The contorted woman in the bed is still there.  The machines attached to her are alarming and flashing red lights at the nurses who are standing nearby.  The woman with the brown hair and the red coat smiles in sadness.  The nurses watch.  The contorted woman in the bed dies.  The curtains are drawn around her and the woman with the brown hair and red coat slips out between them.  'I am next,' I think.

I look through the window to my left, and I see the university.  I know where I am in the hospital, in the city.  I know that place over there.  That place over there is the English Department.  That place over there is where I did my MA just last year.  That place over there has people in it who know me.  If that place is over there, then that means I'm still in the world.

I look to my right.  The curtains are open.  The contorted woman has gone.  The bed is empty.

I look to the left.  The English Department is still there.  I am still in the world.

________

I fought on, all through the night, all through the next day, all through the next night, all through the next day.  Several times I almost gave up.  I couldn't do it.  The machine took over, kept me breathing, just about.  W came, she watched me dying.  I wanted to apologise for putting her through this.  I texted my mum and told her I love her.

Eventually my lungs eased up a little - enough to come off the BiPAP for a while.  Eventually, after three days, I was transferred to my usual ward, but I had the BiPAP overnight to make sure that I stayed alive.  Eventually, I felt that maybe I might not be entirely separated from the world.  Eventually, I dared to think that I might live after all.

Double dip

I've been too ill to post. I was beginning to recover somewhat from the asthma when I sufdenly got extremely poorly with a severe kidney infection. I'm coming through that at last, but I have no energy at all, and no reserves to draw upon. I promise I will do a full update when I can, but at the moment I haven't got either the physical or emotional strength. Hopefully I will do soon.

Short

I crashed.  It was very rapid.  I'm alive, but it was a close call.  Still in hospital, though not now in intensive care.  I'll update properly when I can.