A favourite quote and a way by which to approach life.
Monday, 25 February 2013
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.
Sunday, 17 February 2013
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.
Sunday, 10 February 2013
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.
Sunday, 3 February 2013
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.