One of those weeks

There is so much fuckin shit going on in my head I dunno where the fuck to start. I will just blather on in the order that they come into my head; this has nothing to do with order of importance, just order of coming into my head right now.

I am being tried to be converted to Christian Pentecostalism by a new employee at work. He is from Africa, a black guy (BTW that's fine no worries) but is involved with some full on Pentecostal thing. I have so far resisted any meaningful replies to anything he's said as I've been there before and know much more about it all than he does. Yet today in a coffee break he really got to me, surprisingly. He proclaimed that those who'd died in the New Zealand earthquake in Christchurch, and the Japanese thing, had died from gods will/anger. Not to mention of course the sodom and gamora crap about gays. The NZ thing alone was extremely offensive and I said so. Left the cafeteria and fucked off back to work. I have told him to keep his religion to himself and we will be fine. If the nut persists I will take it to management. This is my workplace, and I shouldn't have to be insulted like that at it. There are laws against that here.

My daughter last night gave me the shits severely. The whole J thing and chucking her shit out on the street started over money and what I considered to be fair (she considered she could just not pay me and owe me at her own calling). Now my daughter is crapping on about bills she'd always offered to pay. Well at least when I was near death in hospital. Seems like things have changed.... Anyway this is very serious for me, as I'm just not going to be used. Whatever I earn I'm not going to feel guilty about how much that is; it is the result of working full time over decades and being trained in my industry. My daughter paying her particular share has nothing to do with that, or according to how much she earns. I charge her a pissy little amount for the rent; $100 out of the $360wk due. I asked her for just $20 a month for the home phone landline rental, just half of the $40 a month rental from Telstra. That doesn't include the $55 a month I pay for my ADSL2+ that works through that landline via the ISP, that she also expects to use. It's not the money, it's simply that I'm being used.

I seems like it's one of those weeks. There's way more but I'm not going to be able to rave on about it tonight. I have to do dinner darlings and get to bed for work in the morning.

Can't deal with it

Daughter having a massive stress attack about her work. And arguing with me about a pissy little $20 phone bill. Just can't deal with this shit, not the way I'm feeling presently. Going to bed, if nothing else to just lie there in my own room with nothing else bothering me. Withdrawing.

Work was fine today.

Life goes on

Had the appt yesterday afternoon with the psychologist, but canceled it. Just didn't feel like going. No biggie he understands, he emailed giving me another appt next Monday. Stayed home all day, apart from going to Medicare for refund money from seeing my GP other day. Now that the health care card has run out I have to pay about $40 again to see him. Was in a strange mood all day, tired, not wanting to do anything. Sitting and staring into space. Didn't want to go outside at all. Didn't even open the back door for the cat. Cat seemed alright with it, stayed around with me for the day.

Have given up trying to figure out why depression strikes. Seems like it comes out of the blue for no reason at all sometimes. The happy pills help a lot.

Have decided to ban myself from going to the local pub on the weekend. It's too soon after being sick to be messing with beers like that. After all the shit I've just gone through I don't want to end up back in hospital because I had too much to drink for a few months. And it's a bit complicated with the J thing, I'm just not able to deal with social situations like that at the moment. She seems very strong and willing to bury the hatchet, but I'm still feeling wounded and angry about what happened between us. I think the best thing for now is to just stay away, it's all too difficult. I also can't afford to expose myself to the depression that can come from drinking too much.

Went to work today but it wasn't busy and ran out of things to do early on. After 3 hours I asked to go home and use the balance of the day out of annual leave. They really like it when you do that as it suits the company you taking annual leave when it's quiet. I'm happy to do it as anything is better than standing there numb with boredom for another 4 hours or so. Reported online to Centrelink today my income, fuck I hope this is the end of their crap now!. Went through the process, gross amount for the fortnight and total hours worked, and at the end I was informed my "Working Credit Balance is 0". I haven't the faintest idea WTF that means, but it does sound encouraging.

Slept for about an hour as soon as I got home from work at 11am, that's despite going to bed last night at 8:30. So fuckin tired the last couple of days. Have been getting a head cold so I suppose that's got something to do with it. Or it may be the mood as well.

The odd hiccup

Didn't go to work today. Looked at the clock at 5:30am and felt tired as anything. Getting a bit of a cold. Was pouring rain outside. Ugh, just couldn't face it. Don't feel guilty about not going today at all, have done really well with it all so far. They know there's going to be days when fatigue and other general complaints will be a factor, due to the HIV. Things that wouldn't be considered a proper reason for someone without the virus, but with me they are a legitimate reason to not come in. If that's a problem for them then they will just have to deal with it, it's the best I can do. I'm sure it'll be fine though. Besides I've used up all my sick pay again so I won't get paid for it. 

Got nearly a full pay last week, fuck it was like winning the bloody lottery after trying to get by on the Centrelink money! Came at a good time too, as the monthly loan payment was due last week. I'd have not had the money for that had I still been on Centrelink payments. Was even able to pay a bit on the credit cards.

A bit worried about how much I drank over the weekend. Wasn't planning on spending that much money. And I really do need to be mindful of my body these days. I'm no spring chicken anymore. I guess there's a period of catching up; people interested to hear about what happened to me last 3 months. Beyond that though I don't want to get into the pub habit again. Going every day isn't an option. Oh it'd be great if I was rich and had the body of a 20 year old, but I don't. And it's not the direction I want to go anyway. Doing that involves losing control.

The alcohol thing

Cold and raining here today. Autumn has finally arrived. Didn't get up until late, just stayed in bed and the cat came and lay there on the bed too. Had to get up eventually as it started meowing it's head off to be fed. Daughter has gone to a friends for the weekend, they have a birthday and is a get-together for that, so I'm home alone. Just me and the cat. I have to go out in the rain sometime today to get litter for its litter box. And to buy another umbrella. I always seem to lose them, this one I left at the voting booth of all places. Yesterday was the New South Wales state election. Both major parties are hopeless, I voted for the Greens.

The neighbour came out and said hello to me when I was taking out the rubbish. He's the one who my daughter got to come in with her to check on me and found me nearly dead on the bed; the start of the second stay in hospital. He's worked in aged care nursing homes so knew all the first aid stuff and that an ambulance had to be rung. He thought I was dead when he first saw me. He invited me to come over for a bit, but I don't really feel like it today. I'm very appreciative of him saving my life of course, but he seems to spend his whole life getting pissed and watching the telly.

Went and had a couple of drinks yesterday afternoon at the pub, and ended up there for a while with people I'd known. J was there too, the one who I chucked all her stuff out on the street. She seems remarkably congenial and wants to rebuilt the friendship. I dunno, she gave me that much fuckin BS when I was knocked out on the floor. Any communication with her resulted in her crapping on about what a terrible person I was supposed to be. I'll never forget that text "I don't care about your near death experience", WTF? There I was sort of numb and in shock, in hospital only 3 days or so after nearly carking it, and she sends me that crap. 

In the end I just couldn't deal with the BS anymore, the last thing I needed was someone treating me like that in the condition I was in. I had to get her out of my life, tried to be civilized about it for a bit, but then snapped over that email she sent on Christmas day; replying to mine about dates for her to come get her stuff. Again, she crapped on about what a fuckwit I evidently was. That was it, I just wanted to get rid of her there and then. It may have been wrong to chuck her stuff out, but certainly understandable IMO. A psychological defence mechanism. I was in deep shock and not able to deal with that from her. 

Whether she realised or not just how sick I was is beside the point. Again, this was one of those occasions when I was being told what a bad person I was, and all it had to do with was her own issues. Not mine. I haven't the time, energy, or willpower to help her with her issues. The best thing was for her to just go away. Maybe she's changed now, who knows. 

But I'm not going to make the pub a regular thing like before. In fact I feel a bit out of place there now for some reason, dunno why. Perhaps just not wanting that whole regular scene again of getting rather pissed every day and spending a fortune. It's not good for depression either alcohol, even though I only drink beer. I want to have more control over my life now, not go back to basically losing control because of alcohol.

Moving on

Survived the little excursion up the road last night. To be honest I found it all a bit boring. Sometimes I wonder why some of those people even bother going there when they're not into doing anything at all. I suppose they could be straight, theyre the ones who just stand there and do nothing, expect you to do it all, sheesh. I met a straight guy there  a few years ago, he was in a long term relationship with a woman, owned a house with her and everything. Yet here he was going out having sex with men. All behind her back. He did it a lot too. I just don't know how someone could lead such a double life. The effort alone must be enormous. But FFS the conscience issues blow my mind. 

I'm mystified by Centrelink now. Honestly they can't seem to get anything right. I see why some people just don't bother going through all the BS with them for the Sickness Allowance, even if they are off work for a month or so. For a measly $300 a week it's probably not worth the hassle if you can avoid it. The latest is that after telling me I owe them $600 (from that last payment I got whilst working nearly full time) they've sent me another letter saying they're going to pay me $89 at the end of the month. WTF? I just haven't got time to go and wait in their stupid fuckin line to sort out their brain dead mess. Or attempt to ring on the phone. They have given me an official reporting day for my income though, next Tuesday, which I can do online. Hopefully I can give them the message that I'm working full time now and don't want their money and hassles anymore. Fucks sake, it must drive people crazy if they have to deal with them all the time. 

I see the psychologist Monday, 2 weeks only this time in between visits. When I answered the usual suicide question last time I had to be honest, and say that yes the thoughts had gone through my mind. Have been thinking last couple of days in the lead up to the visit about what's presently happening in my head and the best thing to discuss. I dunno how relevant it is to my present situation, but it did occur to me yesterday how there have been very few times in my life that people haven't been incredibly critical of me as a person. In all cases it's been because of their own issues, not mine. I'm wondering now if that has had some impact on my thinking and self value over the years. 

One thing that seems to be very relevant of late is the thing not to worry about what other people think, and that it's best for me to follow my own path independently. An offshoot of that perhaps is that I just can't be bothered anymore with conflict. It's like, "oh well they have their own lives and ideas, whatever..... ", and I just don't care anymore about people who's own thinking reflects on how they treat other people. Chucking J's stuff out on the street for example, wasn't an act of war. It was simply giving up any friendship that existed and moving forward without her. 

Think I will go out tonight

Well I did it! Four days in a fuckin row! Full time work! And for the last horah today/Friday, I did a completely normal days work on the guillotine, which is the normal machine I work. I lifted about 4.5 pallets of stock to do so, twice (into the guillotine then out). A bit under a normal day of 5-6 pallets, but hey it was my first day back on this. That makes it about 3 tonnes of lifting for the day, give or take....

I am therefore feeling like celebrating. I think will therefore venture out to Kens shortly. Have had a few beers in happy hour at the local (not the old local I don't want to go back there, it's just too trashy). Another pub getting home via the bus sees me able to have a few quiet ones without getting into a full on piss up with mates, as my mates from the trashy pub aren't there. This pub even has air conditioning! *faints*!

Kens is just up the road on the bus. Haven't felt like any venture out for at least 3 months. Kens is the place to go if you don't want some full on stuff. They have a great heated spa pool and other things. They used to have a really good dark room but fucked it all up by putting 4 stupid cubicles in it that hardly anyone uses. So yeah it's not really much to speak about anymore, which is why I reckon going there is the thing to do when you don't want to get full on. 

Here's their site for anyone interested:

Kens at Kensington

Had to laugh other month. One of our NSW State politicians got filmed coming out of it late at night by a national current affairs show. Big fat guy, by the rumours from his staff he'd been going there for years. Married and kids. They showed him leaving then going to his car "down a dark street"... OMG! It was fuckin Anzac Parade! Lit up like a Christmas tree and one of the busiest streets in Australia! Anyway it was all a drama for him, and I talked to people I knew not long after that who'd seen him there... He was known as "the walrus" due to being really fat. The state premier at first condemned him, but then realised that was wrong. After that said that it was a bad reflection of society that someone like that had to live in a closet, with a wife and family, and a state political job, and not live according to their sexual orientation. I think it's sad that he had to explore his sexuality in secret with the societal pressures placed on him.

But enough of that! It's a time for celebration! It's naked night at Kens tonight; no towels. Blokes walking around completely starkers. If nothing else a cuddle in the spa pool would be nice.

Simon goes there when he's in Sydney. I dunno why he comes from the country and ends up going to a place so bloody tame as that.

Still haven't fainted

Three days now full time at work. Have still not ended up in hospital or fainted on the premises. It was hard getting up this morning though, even though I went to bed last night at the insane hour of 7:30. Was just really tired after the day and a huge meal at home. Simon has taught me how to make simple and cheap meals, but with much energy and nourishment. So am eating very simply but well. Tonight is steamed baby potatoes and brussel sprouts, with pork loin chops in the fry pan. Nothing spectacular but certainly something worth eating. 

Today I started back on the main heavy lifting machine that I work usually; the guillotine. Only a few small jobs as the agency bloke was getting in late. Today was his last day there so tomorrow I'm back into it, full time, lifting on average 3 tonnes of paper a day. Have been lifting anyway up until now so I think will be fine. Actually looking forward to it as everyone leaves me alone on it as it's a full time job just that. All the other dept panic's pass me by.

Got the flu shot yesterday. Could have through the doctor but work was giving it away so I got it done there. Autumn now but the weather still humid and warm. Just want it to cool down a lot. Has been a very hot summer this one, the hottest I can remember here. Have had hot days before, but never the constant heat like this year. 

In the clear

After all the dramatics darlings, it appears I've made it into the clear. Well at least a little clearing. I don't want to have an over-expectation crisis in six months. So I guess the most I'm willing to be happy about right now is that presently things are looking the best they have since last December. Perhaps better given the new way I'm looking at things after nearly carking it twice in a month.

• The HIV doctors (Infectious Diseases team) last week said I don't need to see them for 2 months. From here on there is no crisis with them after my excellent blood results, and just the 2-3 month monitoring. 
• The Kidney doctors (Renal Team) told me Monday they don't need to see me for another 2 months. Everything is fine for now, and they only want to see me, again, for 2-3 month monitoring.
• My GP did the last medical certificate for work on Monday, giving me the OK to work full time again. I didn't need to make another appt to see him when leaving. That is the end of his involvement with getting me back to work.
• I've now worked 2 days full time. It appears I've not fainted (despite working normally) or ended up in ICU not knowing where the fuck I was. 

From here I think I'll have to find my own path. Not talking about medically, but life in general. Life after near death is very very different. Happiness and fulfillment lies in doing what's right for you, not perhaps what others think is right for you. 

Back at work full time

Well I did it! Today was my first day back at work for a full day! Not a bad effort considering where I was only weeks ago.

It was busy, I ended up working the large folding machine. Constantly active putting stock into the feeder and taking the folded sized stock from the delivery. Was pretty tired by the end of the day but don't feel too bad. Didn't have the machine going fast.

Was asked to set the guillotine as the night shift printer was going to cut an urgent job on it for the morning. I know I hadn't been near it in 3 months, but I looked at the buttons and honestly didn't know what to press. Just couldn't remember. I might have to ask the other day shift guy to go over it briefly with me when I get back to working it (which might be this Friday) I'm sure he'll understand. 

But overall went well. 

Unwell

Spent all yesterday sick in bed, almost a migraine. Didn't eat much as the headache was making me feel sick in the stomach as well. Down one side of the head, and making the shoulder hurt too. Took some Panadol for it, too scared to take anything stronger than that these days. It helped a bit, better than nothing. Still hurting this morning, don't think as bad though.

I used to get migraines a lot when I was younger. Really bad ones. Some of them I didn't even know where I was. They've gotten much milder as I got older and I hardly even get them anymore now. Sometimes though I get these headaches that are too mild to be a migraine but too severe to be just a normal headache.

Day off work today as have 2 appts. The first with the renal team, nothing major I don't think, just a follow up I suppose. Maybe will ask them about this headache, as I'm slowly coming off their steroid pills (for the immune system) and they said that if you stop taking them too quickly you can get bad side effects; aching muscles and feeling ill. 

Second one is with my GP to give another medical certificate for work. Am pretty sure he will put me up to full time at 7.5hours/day. They have kept the bloke from the agency there that filled in for me when I was sick, doing the heavy lifting work that I usually do. He has gotten a permanent job to go to so will be leaving end of this week I think. They were thinking of getting another bloke from the agency after that, but I reckon I will be OK. The 6 hour days went fine after an adjustment at the start.

Going to Lightning Ridge

Am going to see Simon in Lightning Ridge at Easter. Booked it all online this morning and printed out the boarding pass. Going Easter Sat and coming back the following Sat a week later. It's only 3 days out of my annual leave at work (Wed-Fri) as Anzac Day falls on Easter Monday this year, so Tues is a public holiday. Taking the train, and then you have to get a bus from Dubbo to Lightning Ridge as there's no trains go out there. 

Is a long trip, leave Sydney at about 8am and get there at about 7pm. I'll get to see a bit of the countryside though. Last time I flew and it was all over in an hour. He did have to drive to where I was though to pick me up, it was 3 hours from the airport! Fuck he lives in the middle of nowhere man. 

Hope he has electricity this time! I was only there for a weekend last time, but OMG, the solar panels weren't working as the batteries had been drained too much when they were put where there wasn't enough sun. He has this diesel generator as a backup for electricity but it's incredibly noisy and really hard to start. Rainwater tanks for water. Gas bottles for the stove. No internet.

"Shadow of the day"

You know when you've listened to a song or an album a few times, and although you try you just can't quite grasp exactly what they're talking about? But then one day you listen to it, or hear it in your head, and the meaning explodes into your consciousness? I had such an experience today with the song I posted day before yesterday.

"The shadow of the day, will embrace the world in grey, and the sun will set for you...."

 "OMG!" I realised. The grey world of depression, colourless. The days events casting their shadow in the dusk as the day ends. The nightmares endured, the pain, the crisis, all contributing to the shadow of the day. But the sun does set, the day does end, and there is a tomorrow.

It precisely describes where I am at the moment. I'm feeling shell shocked and the depression still goes on in the day's shadows. I just can't believe what's happened lately. It's been a shit "day". I hope tomorrow is a lot better.

I've decided I need to start again. Somehow a new beginning. I have so much fuckin baggage. So much that triggers painful memories. But I need to live today and in the future, not haunted forevermore by the past. It's time to say goodbye to the past. Goodbye to the pain, and the wreckage that exists there. Time to walk away. There's little worth salvaging.

"Sometimes beginnings aren't so simple, sometimes goodbye's the only way"

Centrelink hassle

Finally got around to seeing them. I tried to do it online but wasn't allowed to on a Sickness Allowance. So I tried ringing them but the phone was constantly busy, they are tied up dealing with the aftermath of the Queensland floods and the Cyclone. So I went in there the other day after work and the line was out the fuckin door! Waited for about 10 minutes and gave up and went home. Would've been an hour wait I reckon. So I went there today and hooray, only 3 people in the line. I nearly fainted. 

It's been three pays now though since I started working, nearly 3 weeks. This week was nearly a full weeks pay. I've been getting the early bus to have a leisurely coffee in the cafeteria at work before starting, but as I clock on when I get there the pay system has paid me for that half an hour as well. Making it 6.5 hour days instead of only 6. So anyway I end up with a Centrelink person and hand them the 3 payslips.

Unfortunately it's a bit late. I explain the situation how hard it's been to actually get in contact with them and tell them that I'm working, she was fine with it. But I got paid again a fortnights $600 from them, which I didn't realise as it only went in the bank yesterday. So they want that back. She said to just wait for the letter to come and take it from there. 

It's no biggie. The money is there I checked later. Am debating maybe I could pay it off on a credit card, they have high interest, and then just pay it off with Centrelink. I assume they'd not charge the same high interest as with credit cards. I'll have to look into this.

Had a talk with Simon on the phone last night about my depression. Didn't go into it too much, but he seemed much more understanding which was a relief. He says "Oh what are we going to do with you darling". Also that I need a holiday. That all I seem to do is hospital and work. Suppose he's right. He reckons I should have taken some time away before going back to work, but I couldn't really. Was going further into debt at a fast rate and had to do something. May go up again to his place in the country around Easter for a week. Time away would probably be a very good idea. Would take the train. 

Alone in my world

Not too concerned, just a bit annoyed. Simon has been saying to me a few times now questioning why I need to take anti-depressants and that I should get off them along with all the other pills I've stopped taking. That things are going well now and there's no reason for me to be on them. Even suggesting that I'm only taking them because I like to take pills. 

I've sort of said that depression just doesn't work like that. It doesn't just suddenly stop when circumstances improve. It can have a life of it's own. The pills anyway aren't some far out drug, all they do is put chemicals back in your head that get depleted through stress and life over time. They have made a real difference for me. Yes they are a crutch, but one that I need for now. After what I've just been through I really can't believe he's talking like that. It's incredibly insensitive.

I don't want to make too much of it though, as long as he doesn't dig in over it. It's quite understandable that what I'm dealing with is beyond the understanding of many. I don't expect people to really know. Unless you've been there yourself you can't really know. The most I'd want is for them to simply recognise that they can't imagine how I'm feeling and what I've gone through. I do feel a bit lonely at times where I am. 

I thought of this. 

The shit day does end, the sun does set on it. Sometimes it's easier just to say goodbye and walk away from it all, nothing left to salvage, start again tomorrow on a new day.

Great news from the HIV doctors

My blood results are so good I don't need to go on HIV medication! CD4 count at 580, viral load at a bit under 5,000. I said at first that I didn't see any need for medication at this stage with results like that. They were going to say the same thing. They'll continue to monitor me of course, but I don't have to go back until 2 months now.

Truvada is ruled out, when meds finally are needed. Including other associated drugs. Unfortunately that means that my choices will be relatively limited when they decide what to put me on.

2 years since diagnosis

Just realised. Haven't been one to remember the exact date. Pretty sure it was in early March. So 2 years since being diagnosed. 

It's very different having HIV and living with it, than not having it and living with the fear of getting it. There's so much misinformation out there about HIV, and I honestly thought it was a death sentence when I was told I was positive (not that I cared). I know I've had complications, and well it almost was a death sentence around Christmas, but HIV I've found is a very survivable virus these days. With proper medication and early treatment HIV is being managed with people living in to old age now. I read somewhere the other day that we are the first generation to do this with HIV. 

Of course this means we're almost guinea pigs with some of the latest medications, as they're fairly new and no one really knows the long term effects of taking Anti-retrovirals. Obviously with me there were (shall we say) "complications" with my kidneys, and my heart with another HIV pill they tried. It is a matter of finding the best medication suited for you, as we all have different bodies. What I was taking that saw me go into acute renal failure, others have been taking for years without any problems. It does get hard to ascertain if the meds themselves are causing problems into old age, as often the gay community leads a rather more risky life style re drugs and the like anyway.

I don't fear HIV anymore. But then again I don't fear death either. I've no regrets, don't go around wishing I'd behaved differently, wondering what would be if I'd not gotten it. Yes, I was reckless and did things that left me vulnerable. But I was on the verge of suicide back then, and it was a break from the nightmare of life; take drugs and go into another world for a while, a break from reality. Who knows, maybe I'd not survived had it not been for those breaks. Given my mental state, simply coming out HIV+ is probably quite a good result. At least I survived.

 

2 weeks back at work

The second week back at work was rather more strenuous and exhausting than the first. By Friday afternoon I was pretty well had it. They said it was going to be a while before I was able to do everything again. Am glad next week as well is only 6 hour days as I reckon a 7.5 hour day of full time work I'd have problems. Spent much of Thursday and Friday packing, which involves lifting of heavy boxes. It is good to know I can do that now, but was surprised at how tired I got by the end of the day. Thankful I bought those new shoes for work which helped a lot. 

Actually had some spare money this week to pay off some of the credit card debt. Just a drop in the bucket but certainly a step in the right direction. It's going to take months to make a reasonable dent in the debt I've built up, but that zero interest rate crazy card has given me some much appreciated breathing space. They transferred nearly $6,000 from a couple of my other cards (as a balance transfer) to this new one of 0%, saving heaps of interest. Have nearly paid off the 20% one completely now, and have stopped using it. Along with the 13.5% one there's only a few hundred left owing on that. The big one is the 16% Mastercard which has still a few thousand on it, and the personal loan which has 4 years to go yet. 

Most of this debt has been from circumstances completely beyond my control. I've always been good with money, it's just that I got thrown a few curve balls and ended up in serious debt. You have no choice but to do what you have to do, like eating properly the last two months for example. Or paying the utility bills. That on top of losing thousands from not being at work. It's impossible to live off only $300 a week from the Centrelink Sickness Allowance, so I just used credit to make up the difference. The rent alone is $360 a week, luckily my daughter is helping me out there. I think it's pretty amazing I was able to meet all the credit card minimum payments during that time, including the nearly $400 a month personal loan payments. Of course the situation was unsustainable in the long term, but I guess I scrapped through with being only temporarily out of action. Perhaps it's a good thing the Centrelink payments are so low, as it's a real incentive to get back to work and earn decent money. Getting paid this week, even though it wasn't a full weeks pay with only being there part time, felt like winning the fuckin lottery!

Again, I could have gotten a rental subsidy from Dept of Housing had I been permanently sick. Would have gone onto a permanent Disability Pension from Centrelink, and
Dept of Housing would have paid most of the rent. I guess I'd have paid about $80 a week had I done that. I'd have gotten by OK, but wouldn't have been rich or anything. The debt I owe would have likely been paid out of my superannuation. That whole scenario didn't particularly appeal to me though. Felt like I was too young to retire, and if I recovered enough from the GKC would give going back to work a go. It did seem daunting at first, but the whole process so far is working alright. It's not easy, but it's working.

It's doing well for my mental health too. There is something to be said for embracing a challenge and accomplishing a goal. Even if you fail at least you know you tried. Can't control everything but there are things you can. Being proactive is better than being a victim. I still don't know if I'm going to succeed in this whole getting back to work thing, and I'm not promising them anything at work either. But I certainly am going to give it my best shot.

Sydney harbour pics

I finally got around to plugging them in to the PC. Although it was a mixed day of very overcast and bright sunny weather, there was the odd shot or two I took that was worth a bit of a look at.

I dunno why the Opera House is so bloody photogenic. Or maybe not so. You can take a picture of it that's boring to look at, or one that's interesting. It seems to just depend on luck. Here are the best ones of Simon and mine trip to Manly on the North Shore of Sydney the other day:

This was on the way as the Manly ferry left Circular Quay on it's way there to Manly.

This one as we were coming back, the city was very cloudy weather, but I thought the combination with the sails from the boats and the Opera House was interesting; the Opera House is designed to represent sails on the water.

This one as we got closer to getting back, for some reason caught my eye in the bucketful of pics I took. 

Here is the Manly ferry, the first one a pic of the one coming back on the way over, and the second the one coming in to Manly that we were catching to come back.

 Manly was, well, what was expected. I used to do that, lie in the sun for ages. These days it bores me shitless, just can't be bothered. Simon and I ended up having a drink in the pub there to get over it all, ugh people seemed so programmed to look cool or some shit. Such a facade.....

BTW, click to enlarge

The land of the living

Simon left this morning back to the country. He was only here a few days this time. He'd left his dog with a friend and only bought a small bag of stuff. I think he was wondering as much as I was what to expect after his last stay. We did find each other again though so to speak. It seems I was much improved physically and mentally. Would have to say I'm not the same person I was before the kidney collapse, and whatever point I've reached in recovering from it is in a different direction than where I was going before. Even simply the experience of near death is changing. But whoever I am now Simon and I haven't lost our connection with each other as I was fearing. 

He can be pretty full on at times and me dragging the chain, and sometimes I had to remind him "hey man, it's only been 3 weeks since I stopped dialysis!" I'm still getting into weird moods at times, still in a bit of shock I think as well from the whole experience. You can't just switch that off. My arm is still bruised from them taking blood from it nearly every day week before last. Physically and mentally the whole experience is very fresh, and feeling very raw from it. I want to move on, and am doing so, but the progress can be slow.

The 6 hour days appear to be fine so far. Three days done now. Am doing a bit more too other than just at a table sitting in a chair. Think they've been a bit freaked out at giving me anything vaguely strenuous in case I faint or something! Suppose I can't blame them after I showed them the tubes from the perma-cath sticking out of my chest last week. Was quite fun though seeing their looks of horror!

Got paid for last week, first pay covering an entire week, although only 4 hour days. They paid me the 2 days I had off as two 4 hour days of sick pay, thought that was good. Thinking of stopping at Centrelink tomorrow after work with my payslips. 

The one thing I am noticing is how easily I get anxious and confused when faced with more than one thing. It's a bit overwhelming. Dealing with starting work again, Simon visiting and reconnecting, soon to start HIV meds again, and lots of other everyday things of modern life that seem to pile up in my head like a long list of things to do and I just don't know where to start. In the end I end up just doing one or two things and the rest I put off until the next day. Dunno how long this will last, or if this is what I'm going to be left with regarding brain injury.

6 hour working days

Up to 6 hour days at work. First day yesterday. Do that for 2 weeks and then likely back to full time.

Get paid tomorrow, not sure exactly how much I will get, or what it means for the Sickness Allowance from Centrelink. I'd say once I'm working 6 hour days I'd be earning too much to be eligible for it. Doctor didn't bother giving another medical certificate for them for that reason. Not to worry, would rather be independent of them anyway than have to continually report back to them.

Life again

Happy to say things have gone back to normal between Simon and I. I was worried after last time that it might continue in that same vein. I was in such a state with the brain injury then and finding it hard to feel and express emotions. Which included how I felt with him as well. Comparatively I felt hardly anything at times, which was a real concern. We'd been so close in the past, and to lose that was huge. I wanted to feel that connection again, that closeness and support. It was like I'd become a zombie.

But it's back now. That connection has returned. As with the previous post, it's like I've been away, and have returned at last to the land of the living. Able to feel and give emotionally.

Saw the Renal doctor this morning, he wants to see me again in 2 weeks. Said the blood results have stabilized. They are a touch on the high side with the creatinine clearance levels at around 160, but he says that's low enough to keep me out of trouble. There's a bit of scaring on the kidneys but they may improve even more yet, they don't know. Eventually I'll will be seeing him 3 monthly to keep an eye on things. He also was saying what a good result this was given how sick I was, and "one more day and we'd have been going to a funeral". 

He asked what I was taking and I told him about increasing the happy pill dose back to the normal 300mg/day again. He thought that was the right thing to do as everyone was quite worried at how depressed I was recently. They don't intervene in that area though as they're not qualified to do so. Asked me if I was still seeing the psychologist, which I am. I was very open about how I was feeling at the time, said straight out to doctors that I was "incredibly depressed" if they asked how I felt. I didn't know they were so worried though.

Went on a trip out on the harbour yesterday with Simon, his idea to get out of the house. Caught the ferry to Manly on the other side. Haven't been on a ferry in years. Took a few photos but haven't looked at them yet, will post one or two here if they come out OK. It was a bit overcast over the city so not the spectacular tourist type snaps that they may have been!

Back

"I've missed you" he said.

"Yes, I've been away. Seems I'm back now" - me.

We held each other tightly in bed. Dunno what exact form I'm back as, but yes I'm back...

End of first week of work

The first week back at work has come to an end. Would have to say has been a complete success. We weren't aiming too high and expectations were simply that I'd be able to manage getting up and working for 4 hours. Although one day was missed because of hospital appts, the other days were all fine. I feel a bit tired today but I think that's more to do with the Efexor getting back into my system on the higher dose. It takes a few weeks to get to full strength when increasing the dose. I'd forgotten just how strong 300mg/day was, and that between 9am and 11am I always used to feel spaced out from it, no matter how long I'd been taking that dose. I see my GP Monday and will probably increase the daily hours worked.

I get two weeks to tell Centrelink of the change in my circumstances; i.e. going back to work. I've only been paid for 2 days so far anyway so there's not a great deal to worry about there. Next week not sure exactly how much will get paid yet so will have to wait and see. Will take both pay slips in and they can figure out my next Centrelink payment from there. If I get those 2 days off (last Wed and this coming Monday) paid out of sick pay, they may say I've earned over the limit and cut off the Sickness Allowance altogether along with the healthcare card, dunno. 

I was considering telling them nothing as the whole thing runs out on the 17th anyway if I don't provide another doctors certificate, and I wouldn't have to have the hassle of going into their office and waiting in that bloody line again. But then if my health got worse and I needed time off work again, I'd guess Centrelink would have a great crisis about me not doing everything by the book. It took such a lot of fucking around to get everything sorted out in the first place, so I think I'd be better to follow every last single rule of theirs so they have nothing to complain about. So payslips to Centrelink it is.

I have the dentist this afternoon. The temp filling the dentist put in came out the other day, but it hasn't been very sore without it there so I didn't bother going back in in the meantime before this appt. Oh how manly of me! Dunno what he's going to decide to do now. Whatever he thinks best I don't care. Gov paying for it so whatever.

Simon is arriving on the train at Central station in the city at about 9pm. Left the car at home this time, just here for a few days. He gets the same dentist thing as I do, he's managed to convince his doctor in the country that he has some kind of chronic illness, forget what it's supposed to be. So his doctor has done all the necessary paperwork and he's seeing a dentist here in Sydney. He had a sore tooth last time he was here and is coming back for another appt at the dentist he went to then, as well as other things he has to do.

I'm feeling a bit nervous again. Nervous seems to be my fuckin middle name at the moment. I want him to enjoy himself and things go right this visit, me not be sick and not freaked out with anxiety about going out the front door or out of the local area. Fuck, I'm fuckin nervous about being anxious! Good grief!

Simon coming to visit

Simon is coming for a few days from the country. He's got a few things to do in Sydney (including me it seems). I hope this visit goes better than the last one. I was so fucked up then, and felt so bad about being that way with him here. Originally we'd planned for me to go with him back out to the country for a week or so at the end of his stay, but I was just too sick and still getting dialysis. I could tell he was really disappointed and I felt so bad about it. He was very caring and understanding though, but that seemed to make me feel even worse! At least this time I'm fully functional without the need for machinery to keep me alive.

By coincidence it's the Mardi Gras this weekend. I've been to a couple but you have to get there quite early otherwise you get stuck behind everyone and can't see much. Haven't got a lot of money either and don't particularly feel like going out much anyway. We'll see how I feel Sat. It's only just up the road from here. Transport is good with lots of buses to get home on and there. Have never been to the after party, although wouldn't mind. It's evidently pretty full on. I've never been organised enough to get tickets to the thing.

Got an email from Vanessa Wagner, drag queen, other week. Am not into drag but I find her hilarious. Wouldn't pay money to see her though. Simon isn't into drag either. Each to their own, but personally I don't get it. I mean if you want to have sex with a guy, why would you want them dressed up as a woman? But they are entertaining.

Perma-cath removed

It's the end of an era! The perma-cath is out!

Took quite an effort. It had a ball shaped thing just underneath the skin around the tube, to act as a barrier against infection and to stop it from coming out accidentally. I'm told sometimes they can come out on their own not long after being put in, as there's no scar tissue formed. This one however was settled in very well after being there for over 2 months, with an amount of scar tissue attached to the ball shaped thing keeping it solidly in. They used local anesthetic and sliced the entry point a bit bigger and into the scar tissue to remove it. Once the ball thing was out the rest came easily. Had to put pressure on the area for about 15 minutes to make sure there wasn't a lot of bleeding. I wanted to keep the catheter as a souvenir but they said no, dunno why. Probably would bring back too many bad memories anyway.

Saw the Cardiologist and did some heart stress test thing on a treadmill, whilst they monitored the heart with an echo thing. The result was everything is fine with it and I don't have to see him again. He said that any abnormalities apparent the other weeks when I was in hospital would have been the result of the infection I had at the time (pneumonia) and possibly the HIV pill as well which they where giving me (Kaletra) after they stopped the other two.  He will inform the Renal team and Infectious Diseases team of the results. 

Had the last blood test early on this morning before the catheter was taken out. I was sure it was going to be fine as I felt fine, so a bit annoying after all the tests last week for them to want another one, but I suppose it's just procedure. The results were still good, the creatinine levels staying constant. 

So a good day at the hospital today. The biggest thing was getting that perma-cath out. I feel fully functional again. The kidney nightmare is getting further behind me.

Nightmares

Had a bad start to the day today. Woke up after having horrible nightmares for a large part of the night. The mood and feelings involved hanging on for some time after waking up. Nothing to do with any medication, simply nightmares. Perhaps it's to be expected after the last few week's events that I'm going to have the odd night like that. 

Got to work OK. Have been setting the alarm a bit earlier as I'm finding the getting ready for work thing a bit of a challenge, in that I'm disorganised in the head. Still doing the same light work, and made sure they knew of the days coming up that I'm having to have off for appts at the hospital. It turns out I may be getting paid for the days off as well. During the 2 months I had off, although I wasn't there I was technically still employed there and my sick leave entitlements continued to accrue during that time. So I may be able to have some of it paid out of sick leave.

Tomorrows appt is with the heart specialist in the private part of the hospital. Some of them do that; have a private practice but work in the public system as well. I don't have private insurance so he's seeing me as a public patient I suppose and bulk billing. The Renal team rang me this afternoon and have arranged for the perma-cath to be removed tomorrow as well. Hurray! I have to go in early to get blood taken so they can do a final check before taking it out. 

Saw the Infectious Diseases doctor today, and had rather a long chat. The main concern I have with them at the moment is getting back onto HIV medication. They have taken some blood today as they have a pill in mind, and they have a specific test they do to definitively detect if I am allergic to the bloody thing. I go back to see them in 2 weeks, with the view of starting medication again.

During the discussion the doctor noted that my case regarding the Naprosyne had become the subject of much discussion at the HIV clinic (it and the hospital are linked, and doctors work on both campus's) and how to avoid it happening again. The problem is that the numbers are so small with such cases; less than 1% over 10 years. So the doctors haven't seemed to see the need to inform patients about it. My point was that if I knew then what I know now, I'd never have agreed to taking Naprosyne for my back ache. I'd have requested some other alternative, even if it wasn't as effective. I felt like I wasn't given enough information to make an informed decision about my care options. 

The case numbers may be small, but the fact is that the risks aren't about just getting a bit sick, they involve death. Serious life threatening illness. And just look at my case, although my recovery is almost a complete one, just look at what I've gone through with it. Nearly died twice, 2 months off work, a month in hospital total, traumatised beyond belief, and all the flow on effects that I'm going to continue to deal with over time. My head is still damaged from the lack of oxygen and it just depends on the day it seems as to how particularly that affects me. I've lost thousands of $ in wages and gone further into debt. Now I'm getting fuckin nightmares .....