Life, please... no more

[Kahlia1981]

teachit: Stress is definitely adding to the current problems and is part of the reason that J is stronger, but it's not the be all and end all. In the last two weeks we have added 6mg of paliperidone (invega), which we know takes about five weeks to reach therapeutic levels, to my treatment and removed 400 mg (XR) of seroquel. This leaves me with only 700mg (XR) of seroquel and up to 400mg (IR) seroquel to assist with sleep on a PRN basis. The seroquel was not working 100% perfectly, but when you adjust doses it is usually done slowly - 100mg every fortnight or so, not a massive drop over two weeks. There has also been a lot of stuff going on which is also contributing.

I'm emailing my pdoc today to get him up to date on the psychotic events of the past two days. I'm sure he will be thrilled (sarcasm intended). He may not be able to suggest anything but at least he will be informed. And it gives him time to think about what the next step should be or how slow we need to move when we finally remove the seroquel, which I believe is what he is eventually aiming for. Something I'm not all that sure about. Seroquel is the only anti-psychotic drug that I'm aware of that doesn't have massive issues during pregnancy. Admitedly I wouldn't be able to breast feed, but that is much better than knowing the being on the invega in the last three months of pregnancy will cause massive birth defects for the child and lasting issues for them. Oh, and not to mention the side effects that occur when you discontinue the invega.

Meh.

[Kahlia1981]

We Live - Superchick

There's a cross on the side of the road
Where a mother lost her son
How could she know that the morning he left
Would be the last time she'd trade with him for a little more time
(so she could say she loved him one last time)
And hold him tight
But with life we never know when we're coming up to the end of the road
So what do we do then
With tragedy around the bend

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

There's a man who waits for the tests to
See if the cancer had spread yet
And now he asks why did I wait to live 'til it was time to die
If I could have the time back, how I'd live
Life is such a gift
So how does the story end?
Well, this is your story and it all depends
So don't let it become true
Get out and do what we were meant to do

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

Waking up to another dark morning
People are mourning
The weather in life outside is storming
But what would it take for the clouds to break
For us to realize each day
Is a gift somehow, someway
And get our heads up out of this darkness
And spark this new mindset and start on with life cuz it ain't gone yet
And tragedy's a reminder to take off the blinders and wake up
(to live the life)
We're supposed to take up
(moving forward)
With all our heads up
Cuz life is worth living

We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love
We live, we love, we forgive and never give up
Cuz the days we are given are gifts from above
And today we remember to live and to love

[Kahlia1981]

Well my pdoc has decided that the events of the last couple of days are due to anxiety, not psychosis. He apparently believes that the reduction in seroquel shows that the only thing it was giving me was sedation and anxiety relief. So, as I interpreted his email, I have immediately stopped taking all of my anti-psychotic medication as of this afternoon. May God help my husband who has to deal with the consequences of this action.

[teachit]

How are things going with being off of the medication?

[Kahlia1981]

teachit: Not good. My husband was getting set to phone my pdoc and "register his disapproval" when an email came through from him...

I emailed my pdoc yesterday to inform him that I had, as per his suggestion, discontinued my anti-psychotic medication. I also sent him a translated copy of the Foreword from The Complete Manual of Suicide. Apparently he found that an interesting philosophical read. Personally it makes me want to read an english translation of the entire book.... something that is never going to happen. It doesn't help that the book was published in 1993 in Japanese and has been removed from print for quite some time now. It was out of print before we reached the end of the 90's if my research can be relied on. The other factor is that if my husband found me with a translated version of the book I would either end up in hospital or the book would be removed and disposed of while I was otherwise occupied. I can understand this, my husband is only looking out for me, but I seriously want to read it. The weird thing is that it isn't even the discussion of the various suicide methods that makes me want to read it. *shrug*

My pdoc has obviously had a change of heart with regards to my anti-psychotic medications. In the email he sent me today he asked me not to discontinue the meds, just to make a decision between returning to the full dose of seroquel (200 mg XR morning, 200 mg XR midday, 700 mg XR night with 400 mg IR PRN) or remaining with the invega/seroquel titration (3 mg invega morning, 3 mg invega midday, 700 mg XR seroquel night with 400 mg IR PRN). My husband has returned me to the seroquel for multiple reasons, one of which being that it is probably the safest anti-psychotic for pregnancy. The invega cannot be taken in the last three months of pregnancy or the baby will be born with various birth defects, whereas with seroquel the difficulty comes only with breast feeding - which can, of course, not be done.

It's obvious from the previous parts of this post but I'll state it in full anyway.... My husband and I are trying to have a child. We've had all sorts of difficulties since we made the decision, but have finally reached a situation where we are both able and safe to proceed. I think our last major discussion on the subject decided that if I am unable to fall pregnant before the end of this year we will both have the various fertility tests to check things out. I've started taking folic acid in preparation and have the pregnancy vitamins, both at the request of our GP. Fingers are crossed that everything works.

[teachit]

AWESOME about the baby making!!Good LUCK!

I am glad that your pdoc decided to put you back on and seems to be able to listento your needs. With all you have going on mentally I am so impressed with your levelheadedness and ability to communicate your needs.

[Kahlia1981]

teachit: Thanks for the good wishes. It's taken a lot of time and work on both sides for me to be able to be fully open with my pdoc. Sometimes it is easier for me to email things through rather than say them in person, and I often find it easier to express myself in written words.

[Kahlia1981]

We've been having massive computer fun over the last couple of days. My husband's laptop has been out of action since he pulled it apart to attempt to reset the CMOS battery. Since putting it back together it hasn't turned on though it does show as having power. As we presently don't have a server or desktop computer we are left with only my laptop. Yesterday our housemate was having trouble with his laptop and when we looked into it we discovered a worm. The virus was travelling from computer to computer via USB devices and brought along some other nasties with it. The appearance was as though there was a link to the attached USB device which aroused our curiosity. Thankfully we were able to save all the data from his computer because when windows attempted to remove the malicious files it rooted the boot sector so there was no way to boot into anything. We wrapped the data files into zip archives to protect my laptop - the only working computer left in the unit - and spent the night running virus scan after virus scan. This finally showed us the other malicious software that was sitting there, a nasty piece of spyware with a keylogger. Aside from advising our housemate to change every password he might have used on his laptop in the last week or so we completely wiped his computer and reinstalled windows. Now we're reinstalling all the updates, then the antivirus and the program to enable us to play with the zip files safely then we're going to attempt to put the data back on - hopefully without reinfecting the computer. It will be nice when this is finished but I get the feeling that it won't end there.

Taking my tech-head off now....

I didn't sleep at all last night. My husband decided to sleep on the couch so that he would be easy for our housemate to wake when he got home from work. When I finally headed to be at around 02:00 am I just was not able to shut my brain off. For the rest of the night/morning it just kept going around with self harm and suicidal thoughts. I kept turning over the different methods, benefits and drawbacks and getting myself into repeating loops of thought. At some points of this morning I was seriously thinking I should just knock myself on the head and get the f*ck out of here.....

We've been having thunderstorms for the last couple of days. That isn't normal for this time of the year, we don't usually start having storms until early in the new year. Rain has been falling which has had both good and bad effects.... the temperature drops when it is actually raining but the humidity is out of this world when the rain stops. Considering we haven't even entered our summer yet this is going to be one hot, stormy year... most unpleasant.

Meh...

[teachit]

Sorry you had a rough night. I know how that is.

I sometimes will bring in a journal or a poem at time to a therapist. It just makes it easier to explain.

[Kahlia1981]

I feel like crying right now.

Although I know I have probably mentioned this previously in this thread, for a while now I've been losing periods of time on what is becoming a daily basis. I appear to wake up and find myself standing in the kitchen holding tight onto one of our kitchen knives with no idea how I got there, why I was holding the knife or what I was intending to do with it. Thankfully my husband's voice is able to get through to me whilst I'm in that state and can bring me back to the present moment as I'm not always able to snap out of it myself, but it can take quite some time for me to get back to "normal".

The biggest problem at present is not necessarily the lost time or me picking up the knife, it's that I'm struggling to put the knife down, and I don't know why. As far as I can tell there's no logical reason behind it but I do know that attempting to put the knife down or hand it to my husband causes extreme anxiety. It takes quite some time for me to calm down and recently we have been assisting the process with xanax.

Since this has been occurring more frequently I've spent a fair bit of time attempting to find a cause. I've also been attempting to piece together any memories from before each instance of the lost time. So far there have been no clues to draw from similarities between the prior memories and there is no obvious cause. To be perfectly honest I don't know whether that is a good thing or a bad thing. My biggest concern would have to be that this "blackout" is going to happen and I find myself not able to put down the knife. This isn't just because I'm afraid that I'm going to hurt myself but that I will hurt someone else - especially my family.

Each time this happens the fear of my hurting myself or someone else becomes stronger. Hopefully my pdoc will be able to help with this but right now we are just ensuring that I am taking my medications, using xanax as appropriate, getting sufficient sleep and keeping my husband aware of both how I am feeling and how things are going. I seriously hope that these "blackouts' stop and things settle down a bit.

*sigh*

[teachit]

Dissociating is scary. Sorry that is happening.

[Kahlia1981]

Well yesterday was my 5 year 3 month SI free anniversary. It really doesn't feel like it. *shrug* Oh well

[Kahlia1981]

So tired today. I managed to get out of bed in time to only wait half an hour on the phone to Centrelink. Apparently I need to have yet another Job Capacity Assessment to decide whether I "can" work eight or more hours per week. They have brought in a new policy where Disability pensioners who are under 35 years of age and have a JCA showing they can work eight plus hours per week must participate in some form of "work related" activity. When I spoke to the chick this morning she stated that people on DSP fitting the requirements would be expected to participate in volunteer work, paid work or some form of study and will receive punitive action (otherwise known as a severe reduction in the pension which is barely enough to keep a person alive at the best of times) if they do not. Considering both me and my husband are on the DSP, my husband receives a Carer Allowance for looking after me and I receive a supplement for studying which barely allows us to stay alive and have a place to live. We can barely afford to buy my textbooks and pay our rent so we cannot afford the punitive treatment. I also am unable to leave the house without either my husband or a member of my family and spend approximately eleven weeks in hospital throughout the year. Not too many employers would be interested in taking on a worker like me at this point. Mind you, my study would automatically ensure I meet the "participation" requirement and it is quite possible that my husband will meet the requirement through being my carer.

The rest of the day I have basically spent asleep. That's the by-product of not really sleeping at night for several days in a row. *sigh* Now I have to attempt to medically knock myself out so that I sleep tonight and am able to make the trip to the GP surgery in the morning. At least I should be able to get some form of back on track before Thursday, which is going to be an extremely full day. First the hospital in the morning, then a viewing of the building that we are looking at turning into the local Clubhouse for the next twelve months. Personally I think we're both going to crash out Thursday afternoon/evening.

So over it....

[Kahlia1981]

Innocence - Avril Lavigne
Waking up I see that everything is OK
The first time in my life and now it's so great
Slowing down I look around and I am so amazed
I think about the little things that make life great

I wouldn't change a thing about it
This is the best feeling

This innocence is brilliant
I hope that it will stay
This moment is perfect
Please don't go away
I need you now
And I'll hold on to it
Don't you let it pass you by

I found a place so safe, not a single tear
The first time in my life and now it's so clear
Feel calm, I belong, I'm so happy here
It's so strong and now I let myself be sincere

I wouldn't change a thing about it
This is the best feeling

This innocence is brilliant
I hope that it will stay
This moment is perfect
Please don't go away
I need you now
And I'll hold on to it
Don't you let it pass you by

It's a state of bliss, you think you're dreaming
It's the happiness inside that you're feeling
It's so beautiful it makes you wanna cry
It's a state of bliss, you think you're dreaming
It's the happiness inside that you're feeling
It's so beautiful it makes you wanna cry

It's so beautiful it makes you wanna cry
This innocence is brilliant
Makes you wanna cry
This innocence is brilliance
Please don't go away
Cause I need you now
And I'll hold on to it
Don't you let it pass you by

This innocence is brilliant
I hope that it will stay
This moment is perfect
Please don't go away
I need you now
And I'll hold on to it
Don't you let it pass you by

[ame="http://www.youtube.com/watch?v=Ir2Sg_8hC3w&noredirect=1"]http://www.youtube.com/watch?v=Ir2Sg_8hC3w&noredirect=1[/ame]

[teachit]

I hope that everything goes well with the assessment.

[Kahlia1981]

I had a concert today for a singing group that I'm part of. Aside from being on stage I was also in charge of the sound desk and microphones. My husband and I got in there early so that we could set up the second microphone as I was unable to do anything with it yesterday as we didn't have enough power points. We brought in one of our own 6-port boards and reorganised all of the cabling so that it was actually possible to work out what was connected where without just randomly grabbing a cord and starting from there.

The concert did go well and the mic's stood up to what they were needed for. In the hall where the concert was they have two massive speakers and the microphones they use are wireless. Normally this wouldn't be a problem but all the sound gear has been shoved in a corner that is chock-a-block full of devices creating EMI (electro magnetic interference). All of this made setting up the various devices fun.... not. Oh, and I kept having people telling me that "this needs to be louder" followed by "get rid of that buzzing sound". I spent quite a bit of time explaining that the more gain or the louder I had the mic settings the worse the buzzing was going to be but I seriously think I would have been better off telling them it was all up to E.T.. Meh.

Overall though things went well. I do have to confess that I did not appreciate when, just before our final number, one of the members went through and thanked individual people by name for their assistance with making the show happen on the day, completely ignoring and leaving out me in the process (without whom they would have had no sound AND no backing track for the numbers that were using CD's) but mentioned the guy working the curtain who turned up for the first time today and then pissed off once the show was over.

My second gripe starts with the fact that people kept moving things that weren't their's. I set up both of the mic's prior to the start of the concert and placed both boxes (one on top of the other) on the far edge of the props table and one of the boxes vanished into the office (we eventually found it thee after looking all over the place for 15 minutes at the end of the show). My choral folder I placed on top of the microphone box as I was the only person who was touching the mic's when they weren't being used and people kept picking up my folder and asking who's it was.... For freaks sake, if the fact it was sitting on the microphone box wasn't enough, the darn thing had my name written on it.......... Other members had parts of their costumes moved, other people trying to walk off with their shoes and people throwing their stuff off chairs so they could sit down - regardless of what they were throwing off. At least one of those things was a pair of (clip on) earrings that took us ages to find.

Admittedly the group consisted of a large number of elderly people but I have to confess that I could not believe the attitude they had towards chairs and where they were sitting. Chairs were set up on the "balcony" for the group members by my husband and I, ensuring that there was a space for people to get up the stairs from the main floor, from the balcony to the backstage area, to the fire extinguisher, to the side exit and also to the office (wherein is the first aid kit). As the group members were sitting down they moved the chairs to block the pathways that we had so carefully ensured were there. If that wasn't frustrating enough, they acted as if they had ownership over those chairs - even if there was nothing on the chair, next to the chair, behind the chair, etc, they would tell anyone else to move because it was their chair. WTF?????

On the same lines..... At interval we had to move the piano off-stage and out of the way and get the choir stands off the stage. To move the piano we had to throw the bit of carpet back so that it could slide against the concrete underneath and one of the other members and I were acting as traffic lights attempting to stop people from walking through. Then, as they were pulling the stands apart to bring them side stage I got everyone who had anything sitting there to move their stuff. Just as soon as I had the space cleared, some group members picked up "their" chairs and placed them in the newly cleared space. I literally had to kick them off the chairs, move the chairs (and anything they had shoved on them) and say "the stands are coming off and are going right where this chair was. You cannot stay here or your will get squished". Seriously I had made sure everyone was aware that the stands were being moved to this exact spot when I cleared it the first time but it seems that people don't give a sh*t about things like that unless you tell them THEY will be uncomfortable (or bashed to smithereens). Seriously???? WTF again.....

After the concert was over the group and audience had an afternoon tea. To be honest I have no idea what was on offer because I spent the first 15 minutes after removing any bits of my costume that I didn't own looking for the second microphone box. Following that my husband and I put all of the sound equipment either away or back to where it should be. So we spent the time unplugging our power board and replacing it with the original one, following all of the cables to ensure that we re-plugged in the CD/DVD/Blu Ray player and the sound board. After that we had even more fun because we opened each mic, took out the batteries, traced the cables for both of the receivers, ensured that we had the right receiver with each mic and then boxed them - including boxes up the power cables. By the time we got down to see what was on offer for afternoon tea there really wasn't anything left worth talking about.

Please don't take all that I have written above the wrong way. I enjoy doing sound and lighting for concerts and musicals. Gosh, I started doing those sort of things when I was about 11 years old!! Being on stage is also something that I enjoy, so when I get to do both of them in the one concert I really do have a great time. The thing that gets my goat is that the majority of the group members can't see past the end of their nose. Seriously, unless they need a mic or particular lighting they don't pay it (or the person running it) any attention whatsoever. Most of them would have been more interested in getting a cup of tea and something to eat than thinking that the costume mistress needed to collect costumes from the society or that I would actually need to put all of the microphone equipment away. A seat, something to drink and something to eat and the rest of the world can go hang.

I sincerely hope that if I reach the age where I am acting that inconsiderately somebody shoots me or puts me out of everyone else's misery in some way.

[Kahlia1981]

Thursday was an interesting day. For the first time we were forced to use the hospital's new Pay Parking system. All things considered the prices aren't too unreasonable but the thing that gets me is that the smallest period of time you can pay for is a full day - so if you are only there for 30 minutes you still pay for the full day... To me that just seems like money grabbing, particularly when there is not enough parking to begin with and there are no plans to add extra parking, or for that matter to make any alterations to the hospital and how it runs. All they really want the money for is to add to the governmental coffers.

Anyhow, my husband's procedure went well and we didn't have all that long to sit around doing nothing much. He was still perfectly able to drive and we headed over to "Clubhouse Thursday". My husband and I spoke to quite a few of the people who were there to see what they thought of the Clubhouse project and idea and got a fairly good look at how they were coping with certain issues in the present location. I have to confess that I was severely concerned when I read a letter that some of the clients were working on as it labelled Clubhouse as a subset of a mental illness organisation - something that fails against the Clubhouse standards. At that point I chose not to say anything but at the next meeting of the founding/steering committee I will definitely be bringing it up as well as the numbers (and full wording) of the "broken" standards.

We went out to have a look at the building being considered for the temporary home of the Clubhouse and there are quite a few things that concerned me. For one thing, although they have a toilet that is disabled labelled toilet there is no way a person in a wheelchair (or wheely-walker) would be able to get in there. Secondly, the gentlemen who owns the building has an office - for lack of a better term - which can only be accessed via the kitchenette belonging to the clubhouse. The building is gun-metal grey and close to completely concrete. There are several Asbestos warnings up on the walls yet no real fire alarm or response systems. All the electrics travel in conduit on the outside of the wall and, while the space is larger than the current building (which I believe is supposed to become Clubhouse property in 15 months or so) the entire area would need very serious redecorating. I know that they were looking at having a wireless connection but the concrete, and the fact that the building will be shared with at least two other tenants and the owner, the sources of interference are going to be extreme. In addition there is no air conditioning - something required here in the summer - and no windows, although there are a small number of fans. Overall thoughts... What the owner is asking for the space offered is way too high. It would be a case of us improving and redecorating our section of the building, spending time and money to make it usable and the owner getting the benefit of it once we leave and head to the new home which we also have to spend time and money on refitting and redecorating. Having said that, if the owner would drop the price from $1000 per month to $800 AND throw in the conference room it would be worth it - barely. Without the conference room even $800 a month is not worth the time, effort and money.

I need to try and get some sleep. *sigh*

[Kahlia1981]

Memories from before my first ECT (2008) are coming back so strong and fast that I'm not sure how to deal with them. I can remember all the events of Jem's death - including my emotions. Right now there's a fair mix of the good, the bad and everything in between. Some of the emotions that the memories are bringing up ... I can't even put it into words. To be honest I had hoped that the memories had been erased - that my brain had been cleared - whilst knowing that all that was likely to have happened was that the link to the memories was temporarily severed. *sigh*

I feel like crying, I really do. Today I've spent most of the day in bed sleeping or trying to sleep because I can't handle being in the world. Tears have been forming with no obvious reason for them. Maybe it's just time for me to go back and get my brain fried. Who knows..... Sleep seems to be the only thing that is stopping me from going completely insane. Now I'm going to try and crash out again and pray like hell that the world stops before I wake up.

[Kahlia1981]

Last night was really awful. I had to force my husband to head to bed because he was fast asleep on the couch. After I'd managed that he wanted to have the blinds wide open which meant I couldn't sleep due to the amount of light coming in. So.... I moved myself out onto the couch with my pillow. Not even half an hour later my husband woke himself up and was then up for most of the night - with the exception of about two hours when he was sitting next to me on the couch. He sent me to bed at 04:00 this morning and even went to the extent of completely shutting the blinds so I would be able to sleep. I woke at 06:00 and really have just wanted to crash out again all day.

I'm really not looking forward to Thursday. Leaving the house is bad enough but making the trip to be "assessed" by Centrelink just makes it even worse. To add to the already crap morning my husband will not be travelling with me as he intends to do some volunteer work for the Fellowship, training some of the members in the use of software such as MS Publisher. Just the thought of being there, by myself, while they decide whether or not I can work eight or more hours a week - especially as they told my husband on the phone that they want to conduct the assessment based on information that is at least two years old. Seriously, they cannot come up with any decision that they haven't already made as the information is the same. I am still bringing my unofficial academic record which states that I'm enrolled for the coming year, and a letter from my psychiatrist. Part of me believes that the phone call stating I don't need to bring anything but myself is a trick.... that if I turn up without any supporting evidence, or the notice of when I can submit such evidence, they will immediately tell me I am no longer able to receive my pension. My husband is getting the same treatment for next week and if either or us is kicked off the pension we will both be living on the streets in a week.... if that....

Meh. So over this.

[teachit]

((((hugs)))hope the evaluation goes well