Monday, 31 January 2011


One thing to come out of all the time in hospital was this. During the first stay when they put me on some quite heavy drugs to deal with the extreme condition I was in, I for some reason became very aware of this Madonna song. In fact I seemed to be able to physically hear it without even having it play in the earplugs. Quite strange and intense, but at least it was something that wasn't a bad thing; completely separated from what was the unfolding nightmare in other aspects of the stay. I would count it as a positive. Something that I will be able to take with me from the whole experience as a plus.  

Sunday, 30 January 2011


Was talking to Simon earlier and the situation does seem much better as time goes by. He related how shocked he was when he first saw me in ICU only 3 weeks ago, and how he thought my mind had gone. And yet here only 3 weeks later and the huge progress that has been made, even in comparison to how I was when first getting home. How I was physically motivated more and more, and able to think ahead mentally. He is right, in hindsight the difference and amount of progress is a lot. Perhaps a bit more patience on my part wouldn't go astray. 

Probably my greatest enemy at the moment is mental health, or lack of it. 

Friday, 28 January 2011

The perils of depression

There was a bit of worry about me yesterday. In dialysis they suggested a few dancing girls on the Sat session to cheer me up, and when seeing my GP later on he put his hand on my shoulder at the end and wished me well. The depression seems to be increasing, or at least continuing on the same severe level. 

There's things that happen in such a state. One of the biggest is the lack of inspiration, about anything. Nothing inspires. Nothing thrills. Nothing interests. Everything seems quite pointless and meaningless. I suppose this feeds into the thoughts of suicide that sometimes happen in such a mental state, being that life seems particularly pointless and meaningless.

There's also the pain that you constantly seem to be in. The emotional pain lurking just below the surface, often finding yourself holding back tears. You've had enough, you've tried enough, felt like you've done enough, all you can. But it's not enough, you have to do more, endure more pain, go on through more hardship and strife. You have to find more within yourself when you know there's no more to find. You're empty, used up. This causes more grief, more pain, to realise  you're in such a hopeless situation. 

Socially you withdraw. Being around people becomes an effort, even people who previously it wasn't. Being alone is much preferable to putting on a mask and trying to act happy. At least alone there's no need to act, no need to pretend, no effort to make. At least you're being real about how exactly you feel. Consequently you don't want to go anywhere, just stay at home.

And so things all flow into each other, combine into one big mess.

Wednesday, 26 January 2011

Another blood transfusion

Was surprised yesterday in the dialysis session; they gave me two units of blood as my hemoglobin was low. They'd mentioned they may give me some drug to help the oxygen thing last week but nothing about a transfusion again. I had one the first hospital stay, which was the 1st one I'd ever had. Looked it up and kidney disease is one cause of low hemoglobin, so I guess it's just something that goes along with what's happening to me now. Have been quite weak and dizzy the last few days, and they say with the lack of oxygen in the blood the heart has had to beat faster and harder to cope with it. One thing seems to lead to another. 

The dept head from work rang whilst I was there. I'm trying to keep him up to date as everything develops. He stated it looked like Feb was going to be a lost cause as far as getting back to work goes. I agreed especially given that the doctors are making appts for next month now without even asking if it's going to interfere with work. I see the Renal Team on the 1st so maybe I'll get an idea (if any) about a time length for the dialysis, as that's the main thing stopping any attempt to go back to work at the moment, even part time. It's all up in the air right now, I want to return to work but really no one knows for sure exactly what's going to happen. 

I know they try to be positive and encouraging, but there's always the possibility that my kidneys won't recover and I'll end up on dialysis permanently. Nobody wants that, especially me. It would mean going permanently onto some kind of disability pension and becoming completely reliant on the State. I'm having enough problems with feeling bad about not working already, let alone that.

Looks like Simon is leaving Friday. He's been away from his place up north for ages now, spent some time at his son's in Brisbane before coming here before even the Great Kidney Collapse. Neighbours have been looking after his place and he needs to get back. There's the odd road flooded en-route to there but alternate ways to go. He's been sooooo understanding through all this. It was a very "bad" time for him to come, but as the psychologist has said I shouldn't feel guilty or bad about how I've been; he's been here to help. He had little idea how bad things were until he actually got here. I first saw him the second visit in ICU, in fact looking back it was one of the first memories I had being in there that visit sitting next to the bed, as I remember nothing of the 2-3 days on the ventilator. He said later I barely recognised him (I did but had trouble putting it on my face). Fuck, really surprised he stayed around. 

He wants us to live together, probably out there in the country. It's a thought that's crossed my mind, and it's good he's making sure I don't forget it! But again, everything is up in the air here. I do want to return to work, just feel like I'm too young to give up a trade I've been in for bloody 25 years. Or then again maybe that's me just having trouble accepting a new reality? It's good to know the offer is there though. Sydney is a very expensive place to live if you aren't working...

Tuesday, 25 January 2011

Simon is HIV neg

He says he's quite surprised given the amount of unsafe sex he's had over the years. That's just the way it goes though. Some people have lots and get nothing, others have one fuck and get pos. I'm pleased for him, he certainly doesn't need what I've got.

Monday, 24 January 2011

Psychologist visit

"Ride it out" seems to have been the theme of today's visit. 

I expressed how badly I was feeling about not being able to make any effort at all in any area at all. Psychologist view was that there was "clean" pain, which was how I would feel after going through such a trauma in the last few weeks and perfectly understandable, and "dirty" pain, which was unnecessary guilt about things that I shouldn't be concerning myself about. Basically being too hard on myself regarding what I can't do right now, or even what I don't feel like doing with Simon; I keep apologising to him for being like this on this visit. Need to listen to myself and be genuine about how I'm feeling, and realistic about my capabilities presently. There's no reason to feel guilty or bad about any of it, it's simply my current situation.

Explained how I was trying to be completely genuine with my feelings and the way I viewed the whole thing. Nothing is to be gained by going into denial and pretending to be happy and positive when you're not; in the end it just ends up worse. Riding it out involves recognising that I'm in a lot of shit and moving through it in a realistic and practical way. It involves acceptance of the new circumstances. 

So here I am again. Flattened by life's deck of cards. More than once I wish I'd have been dealt another hand; just another go, another chance. ... But no, here I am fuckin again.

Sunday, 23 January 2011

New email

Feel free to email if you so desire. I set it up just for this blog.

How bad it got

Am beginning to realise just how bad things got this time. One of the fundamental things about it has been the level of recovery regarding the brain damage received from lack of oxygen. Lungs had filled up with fluid and I got pneumonia, pretty much drowning. I dunno how long I was lying there like that, but long enough to starve parts of my head of oxygen.  

It's taken me quite a while after getting back home to actually feel like I'm in familiar surroundings again; even things that were there before I wouldn't recognise straight away and it would take a minute or two. Like home wasn't entirely home. I remember looking at the kitchen steamer for cooking, and taking about a minute to recognise what it actually was. The last week has been good to get home but also a period of re-learning the familiarity of home. Home being slightly strange.

I have a feeling my recovery from this is going to take longer than I thought.

The only way is up.

Not doing very well. Am glad I have the psychologist tomorrow. Feeling very low. Pretty much giving up right now.

Got sent this in email. May go.


729 Monthly Meeting

Thursday 27 January 2010

Topic of discussion:

Planning & Updates

ð     Getting together and socialising
ð     Planning the year ahead
ð     Sharing our New Years’ resolutions
ð     Free-flow chat
ð     Setting out positive goals for 2011
ð     Brainstorming

Come and share your thoughts, experiences and insights
with like-minded people. Light refreshments will be served. 

Friday, 21 January 2011


Still remain out of hospital :-) Thank fuck. It's taken a week but am starting to feel like my feet are facing the ground. Like being spat out and spending days turning head over heals not being able to get any kind of direction. 

Lodged the Sickness Benefit form at Centrelink yesterday. They said it would take a max of 21 days to process, and that all the info I provided would go away to another dept where they decide if I qualify for it or not. Can't see them knocking me back, I mean FFS I am on dialysis. 

Simon is still here. I'm still feeling bad about my depression and the lack of attention that flows through to him. But I also feel I have to be genuine about everything and that there's no point in putting on a fake front. I feel down, depressed, not wanting to do things, that's just me at the moment. He's here till at least Monday and is doing a wonderful job of looking after me; very concerned. Dunno why, it's surprising for me someone caring so much. We have to look up on the net before Monday as he may not be able to get back yet because of the flooding up north. 

Wednesday, 19 January 2011

Another outing

Well he's determined. Didn't feel like it but got dragged out away from the 4 walls here. Pretty dreary day but better than nothing. Just down to Botany Bay again:

Weight loss; 10 kilos

Or 22 pounds. That's how much I've lost since this whole thing began. Am down to about 58 kilos now. I do feel better for it, but am looking a bit thin. Wondering if stopping drinking beer has had something to do with it as well. I did that 2 weeks before anything even went wrong off my own bat.

Simon is still trying to cheer me up, thank fuck. may go out later to walk his dog and some air. 

Tuesday, 18 January 2011


I'm worried where it's going. Especially given where it's been before. Haven't felt this low in a long time. 

Saw the psychologist yesterday, which was as always good. He's put me back to weekly appts again instead of monthly like before. Is rather worried I think. One thing about being genuinely suicidal previously, is that you can recognise  starting to head in that direction later on. I've always been very honest with him; WTF is the point of not?

Nothing thrills me, nothing makes me happy. It's like I'm being tied with a rope and dragged along the bottom of a pit.

At least Simon seems to have perked up a bit. Told him I hate being like this when he's here. He got the HIV test yesterday, along with the counselling. Will find out Monday the results. 

Monday, 17 January 2011

Sickness Benefit

I have decided to apply for it. Know very little about it, only found out about it the other week. Think it's sort of like a sickness payment from the gov when you've run out of sick pay from work. If successful I have no idea of the amount of $ involved, and it will be the first time I've got anything from the gov since getting the Carers Allowance for my late wife.

Have a busy day today. Got to see my GP re the discharge summary from the hosp. Also need prescriptions from him as they only gave me a few days worth. Also got to get my earing put back in, dunno why the fuck they took it out in ICU, but you need reverse pliers to get it back in, like the nipple ring. Have to go to a special piercing place near my doctors for that. Seeing my psychologist for an hour at 5pm after that at the HIV clinic, he's has been very worried about me. Word got around to him this time of my misfortune. I also discovered $65 worth of Medicare refunds re seeing the doctor before hospital that I can cash in, so will be off to there shortly. 

Sunday, 16 January 2011

A bit of a cheer up

Yesterday, the first day out of hospital, was just the pits. Emotionally scraping the bottom. Didn't help going back for 4 hours either for dialysis the very next morning of escape! This is completely different than the first time I came out. The nightmare tenfold. 

Simon isn't doing too well either. We've both seemed to have lost interest in sex presently. Both depressed. FFS! He's been rung he told me by the clinic I go to that he should get an HIV test. We're both wondering how the fuck they got his number as it certainly wasn't from me. Haven't given it out to anyone, not even confidentially to my psychologist. He has of course said he's taken risks with other guys, which I knew all along. With me the risks have been quite minor, but I guess still a risk. I told him from the start I didn't care, but he needed to know there was a certain level of risk involved even though small; it does take two to tango.

He drove us down to La Parouse, on the shore of Botany Bay (where Captain Cook first landed in Australia) for some air and space this morning. Took the camera. Was cloudy, not too hot.

Looking out over a nudist beach in the distance.

Bare Island, an old fort.

Interesting shot from the Bare Island bridge.

A bit of Botany Bay.

Saturday, 15 January 2011

I nearly died again, new years edition

This time was worse than last. It was the most horrifying experience. I got out yesterday, and going today for a four hour dialysis. Went in 2nd, thought was only in a few days but in for 12. Delirious for much of it. Had no idea how very sick I was. Only ended up typing something on the plastic brain last couple of days as that's about when my head cleared up enough to do so. Huge amount of convincing the doctors to let me go, in the end I'd had enough and was going to sign myself out if they didn't agree; what I went through mentally in there IMO was affecting my physical health.

On the positive side my head is coming back, although a bit slow for my liking. Am having trouble thinking of words still and recognising  familiar objects. Evidently because of the lake of oxygen that happened in the brain. Doctor indicated that my progress was good in that respect, as he'd seen people in ICU go through such things and not recover at all in the end.

This I wrote last couple of days in hospital:

Skirting the edge of the abyse. 13th Jan, 2011

I ended up back in hospital again. I don't remember at all what happenened. Evidently I missed a dialysis appointment and went unconscious at home, lying the wrong way on the bed in my undies. Dialysis called my daughter who came around home and found me so, she called the ambulance, and I spent about a week in ICU in total delirium. Don't remember much of it at all. Was admitted on the 2nd Jan, looks 99% likely will be home tomorrow. I thought I'd only been in here a few days but it's been 11.

The opinion is that my kidneys were of bad performance, and even though I was keeping a good eye on the amount of fluid I was drinking (coffee, water, fizzy drink) it was still too much. Crips, I dunno how a single litre a day can be too fuckin much, but looks like yes. The good news is that during this stay in hospital my urination has increased substantially, indicating some improvement in kidney functions.

But apart from that good news it's all bad. I've never had such delirium before. It lasted for days, the most unpleasant experience. I couldn't distinguish between reality and dreams, thought the dreams were entirely real at the time. Like living in a nightmare. All I wanted to do was to go home to familiar surroundings. In the last month I've been thrown from a world of relative health to a world of machines and near death, and I'm not coping with it at all. The depression is skirting. I'm starting to wonder if I'm going to get back to work beginning of next month too.

Simon is at my place and is visiting the hospital every day. It makes me feel worse that he's at my place without me there. I want to go home even more and hold him at night. I dunno why he's even bothering with me in my current state. I guess he must really like me. It's good to have had someone come in every day like that. You really find out who your real friends are in situations like this. Other acquaintances via the pub have just texted and that's it, not even bothered to come in for 10 minutes FFS!

Also my daughter decided to move back into the spare room that I booted J out of; she just came out and said "I'm moving back in, you’re too sick". The whole thing really shook her up. Fuck knows how this is all going to work out. I only hope she's grown up substantially since she last lived at home and dragged me into court over an argument that it took 2 to tango. I just couldn't deal with at all if things went haywire again. That in fact was the last straw that instigated my 9 month mental collapse in 2009, and the 6 month period of near suicide. The HIV+ diagnosis was largely irrelevant giving the shit I'd been thrown already.

I'm scared. Scared of what may happen next. My health has plummeted into the depths in a very short time, completely unexpectedly. Am now worried about the future...

The main kidney doctor told me today that whether I go back to work or not depends on if my kidneys recover. This may be a big turning point in my life, involving going on disability benefits and/or retraining. Have worked pretty much full time all my working life. Lifting 3 tonnes of paper a day may not be an option anymore. After all I am nearly 50 anyway.

Found out I was near death again 14th Jan

I only found out yesterday. D rang from Melbourne. He’d been there on the day I was admitted into ICU. I had a breathing tube down my throat and there was a bit of a discussion about the possibility of pulling the plug. If so the decision would have had to been made by my daughter as that’s what’s in my Will; I’ve given her the power to make that decision as I don’t want to be left a vegetable kept alive by machines.

D was yelling. “It’s not your time to go yet”. I was largely unresponsive. Don’t remember any of it. I had no idea things were so bad, even worse than the first time it appears. No wonder my daughter freaked out and decided to move back in.

I’m going home today. There’s slight bits and pieces to do with my heart that they are a bit worried about, but after 12 more days of hospital hell I have convinced the doctors that it’s in my mental and physical health to go home. And this has been even more hellish than the first time. Just can’t describe how horrible the delirium was; not knowing what was real or what was imagined/dreamed. Trapped in a nightmare for a week. I never want to go through this again.

Where is this going to end? I wanted a new beginning; instead I get a new club into the ground. I’ve had enough.

Perhaps it’s still early days yet. . . .