Life, please... no more

[Kahlia1981]

@Emma: My psychiatrist should have the referral up to them today and they will check my health fund details and the referral and should get back to me next week. So, I should find out next week what will happen. They haven't mentioned how long I might be there, but I guess it would be for as long as it took for me to get well. It could be for as long as a week up to a couple of months I guess ....

It's a brilliant opportunity for me to get intensive psychological treatment while also getting psychiatric treatments such as medications all in the one place. So my body will be in a place of safety and comfort and my mind can be taken care of at the same time!!

[Kahlia1981]

My psychiatrist faxed off the referral forms yesterday to the clinic in Cairns. While I was on the bus yesterday trying to get myself and my paperwork to defer my second exam to Officeworks in order to get it scanned the Clinical Nurse Consultant (CNC) rang me wanting to talk to me about arranging my admission!!!! Because I was on the bus and not heading straight home she is going to call me back today, but I have to confess two things: 1) I was not expecting the process to be that quick. 2) I was so excited I damn near piddled my pants.

As soon as I got off the phone from the CNC I sent a text message to my mother to tell her that it appeared I had been accepted to the clinic and would know more today, and another to my housemate who I was meeting at Officeworks to tell him I had good news. As the weather yesterday was downright depressing due to almost monsoonal heavyset rain that had set in for the day it took me quite a while to cross the road to get to my housemate but when I told him he was almost as excited as I was. I do have to confess though that we are both not counting or chickens until they are hatched. We are still remaining hopeful that it is happening but not committing to it until it is underway - we have had too much experience in the public system where they tell you something will happen and then it doesn't.

Last night I initially struggled to sleep because my brain was trying to work out all the things I would need to do before I could go up to Cairns, all the information I would need to leave behind so that my housemate could get things done if I wasn't here and things went wrong. Our rent, for instance, comes out of my bank account into my housemate's account as a periodic payment on the day I get paid and has been stopped by the bank's system for no apparent reason on one occasion. If that was to happen while I was in hospital I couldn't do anything about it, so something would have to be put in place to rectify situations like that.

I'm also trying to work out what and how many sets of clothes I would need to take, and how much toiletries. I also don't know whether I will have access to electronic items such as my mobile phone or iPods. I'm hoping at the very least to have my music with me because I struggle more with anxiety from the agoraphobia without music, and I'm going to be an awfully long way from home. The mobile would be a wonderful bonus however. There is also the question of my pain meds that I need to discuss with them.

My housemate and I are hoping to get out and buy me a usb charger for my iPods so that I am not tied to a computer to charge my music devices. Freeing me from the computer will make that a lot easier, and allow me to reduce a bit of anxiety by knowing that I can charge them no matter where I am. We've also talked about me taking the better battery devices with me.

I have to say that no matter how well we've planned this I know we will forget something, but I think it is going to be worth it. I'm really looking forward to being treated like a person, and regaining some sense of "normality".

[Pomegranate]

I am so happy for you Kahlia. This sounds like a truely wonderful opportunity for you. I am sure you are right and you will forget certain things but that is what post and visiting hours are for. I hope this opportunity gets you well on your way to being happy and healthy. Will be thinking of you and please update when you can xx

[crazykat]

It's great to hear of this opportunity, I really hope it works out for you.

[Kahlia1981]

Kat & Emma: Thanks both of you. *big hugs*

I'm sitting here and its the night before I leave to head up to Cairns. I'm extremely nervous and anxious as well as excited. To be honest right at the moment though the nerves are winning the war on my emotions. I tried to go to sleep earlier and had to get up because there was just no way I could sleep. I have packed my bags except for a couple of little items but am otherwise ready to head out the door. I am really hopeful that I will be helped by this clinic, but am scared by my previous experiences in wards. I know that my previous experiences are not going to be anything like what I am going to but .... they are all I have known. I also am going to be far from home and with people I don't know and so far from friends and family.

I don't know if I will have internet access, but I will write when I can.

[Kahlia1981]

Hi all.

I am currently in the hospital in Cairns, where I have been for almost three weeks now. It is vastly different from anything I have experienced elsewhere. The nurses are lovely - nothing short of amazing. They actually listen when you talk and want to help. They sit with you while you are crying and help you to get in control. They take the time to help you when you can't sleep. They are even trying to help me with my phobia of medical staff gained from years at my previous hospitals!!

The doctors that I have seen have been brilliant also. In addition to the two psychiatrists on staff there are a number of GPs who are on call when necessary. They complete an initial assessment when you enter the clinic, and come in when and if other physical issues arise. They take all physical issues seriously as well, so you realise that your entire health care is important.

Unfortunately my mental health has not been as responsive to care as we would have liked ....

My first two days in the clinic were extremely overwhelming and saw no changes whatsoever. On the third day a new antidepressant was introduced (Valdoxan - 25mg). My medication wasn't touched again until this monday when the valdoxan was doubled. The next day my depression had worsened considerably. The psychiatrist then informed me that ECT was the best option for me to consider. My mood since then is further deteriorating although I am attempting to act (with assistance from the nursing staff) against the way my mind and body are wanting me to.

The very mention of ECT was enough to make me want to leave the clinic and run home. I am ... not comfortable ... or in some ways **** scared of having ECT as I remember the effects I had from it the last time. I remember the physical effects from going under the anaesthetic, the time that I lost having to go in three days a week, the fact that I lost the majority of my memories of my past prior to the year it happened in, the way it made me feel, the fact that I couldn't do anything, go anywhere or be anything because I had ECT.... I'm also scared that I will lose the last 2.5 years .... There are memories in there that I really don't want to lose....

The depression today is extremely bad, I realise that. I'm seeing the world in monochrome for one thing. I don't want to leave the bed. I'm smoking like there is no tomorrow. I can barely go anywhere without having music playing in my ears. I struggle to make the simplest decisions and my thoughts just seem to ... not even be there. But I am sure there must still be medications they can try....

I should see the psychiatrist today. I am anxious and using my PRN seroquel to keep me calm. I hope that I can do this. I am nervous that I cannot.

The thing with me and ECT is that I believe it is a last resort - a last ditch attempt to save lives. I am severely depressed but I do not feel like self harming nor do I have thoughts of suicide. Surely there is something else they can try first?

I believe there has to be. Now I must convince the doctor of this. Or at least make him present a case for the ECT. Otherwise I go home worse or at least no better than when I came in.

[lostandalone3]

Hey
I have had alot of ECT in the past, I had maintanence ect all of last year so i understand how it feels to lose memories etc.

If you do have ECT, then why dont you write down all those memories you dont want to forget? It helped me. I also kept a daily diary while i was having it so I wasnt able to forget anything that happened, if I re read it then it helps me to remember.

You thjink they would want you to find a medication tho that is going to help since ECT does not last forever.
I read all your posts so I am glad you are getting the help you need and deserve.

[Kahlia1981]

Well I'm home and tons happier than I was when I went, or even when I wrote my last post.

I managed to speak to my pschiatrist on Friday March 18th in relation to the ECT. I assertively put forward the medication options I believed should be tried before going down the ECT path. I explained the problems I had had with the ECT and that I wanted to try the medications first, but made sure he knew that ECT was still a possibility if they failed.

Medication-wise I was changed to Lamictal instead of the Topamax and we added Reboxetine to my combination. A few days later the psychiatrist was happy with his decision as my base mood started lifting.

My partner came up to visit me on March 22nd and while I was on leave with him he proposed. I said yes and we are now looking at possible times and locations for a wedding. The proposal and his visit lifted my mood a considerable amount, some of which disappeared when he did. But even allowing for the environmental factors the base mood given by the medications is still higher than when I travelled to Cairns.

I was discharged and came home from the hospital yesterday, arriving in my home town at about 7pm last night. I am so happy to be back home once again and in the arms of my fiance. To sleep in my own bed, with my own pillows and so forth and not have to stress about what setting I had the aircon on or having to worry about someone coming in with a torch every hour has been wonderful.

I now know as well that the clinic in Cairns will be happy to provide me with good care and treatment if it should become required. Also the clinic is getting ECT in December if things deteriorate enough for me to require it.

Also my fiance and I have been considering moving to Cairns so that we are closer to the clinic now that we have testdrived it (so to speak). I made several friends and now just have to keep in touch with them. It's amazing how places like that bring people together.

[Kahlia1981]

In some ways I wish I had never returned home...

I've been finding each day a real struggle to just do the simple daily tasks. My sleep has gone out the window. My eating has gone out the window. Just to handle the normal running around that we do tires me out so quickly. I am starting to feel like I should just give in and give up. Everything is just so difficult.

Then today I found out that one of my universities failed me, despite having received my special consideration form asking for a deferred exam. They didn't even a) acknowledge its receipt or b) upon deciding that being in hospital for six out of seven weeks was good enough, provide me with the outcome of my application and how to appeal against it if I thought it was wrong. By doing the latter they have gone against university policy, but I guess they figured it was just a student with a disability who would give a ****. I'm considering taking the university to the anti-discrimination tribunal in the appropriate state. I am over being treated like **** because I have a disability. It's not my fault that I needed the hospitalisations. I had maintained medication compliance. I was sick you ****wits. What am I supposed to do? Not seek treatment?

I've already started looking for a different university as I can't handle the stress (and the excessive fees for things that no other university charges for - $50 for each page of a credit transfer that has to separate core subjects and electives to different pages?) and there is one that is standing out so far. I made contact with them today and the first impression really boded well for good study and support. I have to email the DRC tomorrow to find out what they can offer, and then ring the faculty office next week.

I don't know right now whether I was to shout, scream, throw things, kill people .... Everything just seems to be conspiring against me so that my life is full of shitty bits. I know I am whining and I am sorry, but I am just so frustrated and angry right now that I don't even know what to do.

Grrrr

[Kahlia1981]

Caution: Extreme anger and multiple swear words used in the following

It just gets worse at the moment. We lost a combined $400 a fortnight when my fiance and I became engaged - we were classed as partnered instead of dating - even though our costs had not changed and the cost of living has increased exponentially. Then today we got letters telling us that our rent assistance was cancelled because we failed to reply to a request. Neither of us got the request and it was for when I was in hospital so we rang the bastards to find out what was going on. The worker said that the request was a "mistake" by the internal computer because no request had actually been authorised to be sent for the applicable dates. We then had to travel into the office to show them our lease and explain the circumstances. Our rent assistance has gone from $114 each to $44.90 each despite the fact that our rent has not changed ....

On the ongoing Swinburne/OUA ****wits .... Today I received a phone call from the lecturer involved stating that he never received the email containing my special consideration application. I told him that I had a delivery receipt for it - which I do - and he asked me to send it through again whilst pretending to be embarrased, concerned and upset. I attempted to send it through at 10:20 am AEST only to receive an email at 11:10 am stating that I had never sent him the form and I needed to do xyz to sort the matter out. I then found out that my university account had been cancelled and re-sent the email through both my private email and the online version - live@edu. I got both delivery receipts and also confirmations this time. I am so ****ing pissed off at this university that I would be prepared to bury not just the two lecturers but also the faculty and the entire university if required.

Oh and then I found out that I wouldn't be able to get two of my new medications via the pharmaceutical benefits scheme (pbs) meaning that one will cost me $140 a month and the other $30 a month. Considering that we are now (thanks to the ****ed up social security - I wish I could identify as being aboriginal or torres straight islander as then I would receive several thousand dollars a month) $400 a fortnight short on the basics we need to survive!!! Yeah a ****ing $800 a month shortful for no reason making my medication impossible for me to get. I wanted to come off the **** because I can't afford it, but my fiance won't let me.

I feel angry, depressed and like ****. We are going to drown into a state we will never be able to get out of. And why? Cause I need this ****ed up medication that the ****ed up board won't put on the ****ed up pbs. I could seriously kill someone right now. I have had enough of this bullshit. It seems that everything that I do some ****er wants to jump in the way.

Get me the hell off this world. I am over it and everything to do with this life.

[Kahlia1981]

The rest of the week has continued along with disaster followed by disaster.

My fiance and I worked out our budget of Friday ... we're about $400 a month short and currently bankrupt. We had removed any luxury items before this budget. We don't know how we are going to survive.

At least Saturday was not quite so bad. We presented the budget to my fiance's parents. They want us to move to Cairns in June instead of 6 to 12 months later as we were intending. They have offered us the moving costs, but they haven't considered that it would be 3 months at least before my fiance (or I) would be able to start earning an income by the time we settled in, canvassed places to work, started working and actually earning something from that work. They have also offered to pay for my fiance's work uniform and so forth. My fiance's mother paid for us to get a cab home too.

After that we had dinner with my parents. It went fairly well all things considered. When we told them of the shortfall in the budget their response was "that's too bad". WTF???? I'm sorry but I know for a fact that if my brother or sister were in this position the 2 of them would be clamoring to help either financially or by buying them a unit to live in. I seriously hate the inequity in my family sometimes. It's like they thought we were making up or exaggerating how **** things were for us. They also don't believe that the ward in Townsville is as dangerous as it us. Do you know why? Because the times the ward has literally tried to kill me have all been whilst I was living independently.

Today I managed to clean my bedroom to add to the clean lounge room and desk I achieved earlier in the week. It only took me an hour where it could have taken (and looked like it would take) much longer. There is now plenty of space in the master bedroom for my fiance to start putting things in there to make it easier for both of us. In turn, my fiance cleaned up his old bedroom so it is now suitable to be used by guests, should the occasion arise. We've both worked really hard to erase all signs of me having been away, and made the unit liveable but also much more comfortable.

I emailed my parents a copy of the budget today and asked them if they were able to suggest ways that we could cut it down further to bring it closer to the black. It will also (hopefully) convince them that the situation is as we said it was - no black whatsoever. I did have to throw in a couple of "notes" for them stating what was included inside the groceries and miscellaneous, and also to remind them that tobacco was not a luxury for us at this point in time.

This evening we had friends drop by unexpectedly and spend 45 minutes here. Because we had no warning and were both exceptionally tired we didn't really want to spend that much time with them. Their daughter was particularly noisy this time as well and to be honest I was glad when I had to tell them they needed to leave as I needed to take medication. It proves I guess that neither of us is a social butterfly.

Now I am just exhausted and wanting to go to bed. If only my ****ing sleep would improve.

[SoMuchMore]

*hugs you tight*

I really don't have words right now... but I am thinking of you hun.

[Kahlia1981]

Laura: Thanks hun. *hugs back*

I have no idea what is going on at the moment. Social Security has changed my pay date without telling me, so I have no idea when I'm next going to get paid, and there are three days worth they didn't pay me, AND I will never get back. You can't just change someone's pay date without telling them you c***s. As if they haven't made things hard enough for us without sacrificing over $200 of my pay because you've decided that my normal pay date wasn't good enough. F***wits

[Kahlia1981]

Well the disasters are continuing, but we scored one good thing so I guess and hope that the bs is coming to an end ..... finally.

I finally convinced my mother to close our joint account that I haven't put into in years. I thought that the balance was about $1 but discovered that there was about $60 in there.

Then we got our payment summaries from social security. They are giving us rent assistance based on us paying $140 a week rent instead of the $280 we actually pay. We already took the lease in for them to see but they still managed to screw it up. We will attempt to get it fixed before our next pay.

Speaking of pay, my pay date was apparantly changed because both me and my fiance are receiving the disability pension and in that situation both partners must receive their pay on the same day. Personally I think that is an incredibly stupid idea, but it is from social security so that goes without saying.

We finally got a plumber in today to fix the toilet which has been leaking sewerage water all over the bathroom floor. He also fixed the leaky cistern and only took about an hour to complete the job. The last "fix" of the first problem was only around two months ago and apparantly the plumber that did it completely screwed it up.

My fiance has been chasing down Brother to fix our printer as they said they would send someone out to see it over a week ago. My fiance still hasn't heard from the company that is supposed to do it, although they have told Brother that they rang several times, supposedly even speaking to my fiance once. The problem? They have never rung or left a message and my fiance never spoke to them. They claim to have rung several times today but we were only out of contact due to lack of network for 15 minutes and there was no record of voicemail of missed calls or anything.

In addition I went and saw my GP today and got both some good news and some bad news. The good news is that there is nothing wrong with my wrist, or more importantly my neck. The bad news is that it makes the problem into my shoulder region. Due to the effects (tingling, pins & needles, unusually sensations, loss of power, dropping things and other issues in regards to my hand) and the pain in my shoulder it has been narrowed down to my brachial plexus - the area all the nerves to the arm pass through in the shoulder. I am going to require surgery and will need a specialist to do the operation. However there are no specialists of this type north of brisbane. The public system will take years before I even get seen and we aren't sure yet whether I will be able to afford having this done in the private sector. I really hope that this can prove to have been possibly preventable by proper attention and care because then I am suing the f*** out of Queensland Health.

Now I'm tired just from writing that. Bed time me thinks.

[crazykat]

Sorry have only just caught up on how things have been for you, things have been crazy for me. I am glad that your stay at the hospital was helpful and that they were good for you. Also congrats on the engagement. I'm sorry things have gone downhill slightly for you. I do believe you will get through this through as you have proven that you do have that strength and determination there. That's crappy about the university, I would definitely put a complaint in. Also I think it is a wise move to begin to look into other universities. That is complete rubbish about centrelink, seems they never will get it right. Hold on there hun, you will get through this. Thinking of you xxx

[Kahlia1981]

Why is it that life always seems to hand me lemons, and I can't even make sunlight out of them?

I have had to severely reduce the medications I am taking that I can't afford. I've been doing that for several days now and have reached the point where I am completely out of one of them, and have one tablet left of the other. I can't see my psychiatrist until the 27th (immediately after easter but still a week away) and I don't know if he will be able to get me these meds as hospital scripts for the hospital pharmacy. So basically I'm completley out until I see him. This hasn't really been the best move for me as I am now dropping rapidly into depression. Last night I even started planning my suicide complete with date and time. And, while I know that isn't really a good sign, I'm terrified of telling my fiancee what is going on for me mentally. I don't even know why. I texted a friend last night and she rang me back to see what was going on. We ended up talking for an hour or so. She has said that she is going to keep checking on me, but I feel like such a burden on her. I don't even really know what I want to do right now. In some ways I don't even want to leave the bedroom, but I know that will alert suspicion that something is wrong. I just would really like to disappear, because then nothing else can blow up in my face. *sigh* If only I wasn't such a coward...

We did manage to get Centrelink to accept our rent amount that both of the last ladies from there got wrong. We are even being back-paid which I have never heard of before with rent assistance.

In the end though what does it matter? My partner has put out 100 resumes in just over a week, and no-one is even slightly interested in giving him a job. Without him having a job we will be completed homeless. What is there to look forward to?

I should stop my complaining and whining and just get on with it and get the hell out of here.

[crazykat]

Can you get your appointment moved forward at all? I am glad your friend is checking in on you through and no your not a burden. Friends are there for both the good and bad times. Would you please reconsider talking to your fiance? I am glad centrelink is back paying you. Hold no there xxx

[Kahlia1981]

Just realised that I forgot to update on the universities situation. My application for waiving the withdrawal fee from OUA is due to be back about the 11th of May - a few days before the end of enrolments (15th May). That would mean I would be free to enrol in SP2 for one subject that is provided by RMIT, and decide whether it is worth sticking with them until the end of the year. Then I will definitely be changing universities.

With regard to Swinburne, I finally managed to submit my Special Consideration form and get recognition that it was received. In the process of doing so I discovered that my account had been deactivated and therefore I was unable to access it for email or any other purposes. The issue I had with that is that it was done deliberately between me sending an email that the lecturer received and replied to and the next interaction with the lecturer less than 30 minutes later!! Anyway the final decision was to send me a cd with all the course material on it, to set me an alternative assessment and to give me a deferred exam, most likely to be at the end of SP2 because it was too late for the next round of exams.

Monash offered me a deferred exam due to my hospitalisations and I have now received the date and time. The exam was due to be sat at 08:15 am, but there was no way I could get there that early, partly because of medication and partly because as we don't have a car I have to rely on the buses and the earliest bus would get me to the venue only 5 minutes before the exam. Of course that doesn't make for a "good" exam result so I contacted the disability officer from Monash and it was changed to 09:30 am for me. This will hold true of any exams with this university.

My depressive state is still continuing. Today I made my fiancee and my support worker aware of the depth of the situation. It doesn't make me feel any better, or any less guilty for that matter, but at least they know and can make the necessary allowances and be on the lookout for some of the dangerous signs.

I just wish we could get a break from the world feeling like it's caving in. *sigh*

[Kahlia1981]

Again I forgot to mention something. I'm currently deciding whether to finish my studies through either the Southern Cross University or Deakin. Southern Cross will allow me to start mid-year whilst Deakin would mean I have to sit tight until the new year. The other major difference is that mid-year entry is applied for via the university whilst first trimester has to go through VTAC. Both options allow me to apply with "special circumstances" - mature age, disability, female enrolling in a degree where gender is predominately male and financial hardship - so acceptance isn't so much of an issue, especially when my grades (HD average) are taken into account. Deakin has a pretty good disability resource centre. I get Advanced Standing from both - up to 16 subjects - so again not a deciding factor. Both work in trimesters but Deakin has the more attractive package of subjects from what I have seen.

To sum all that up: I am intending to apply to VTAC (with Special Entry) for Deakin in August to give me a first trimester start. In the meantime I am intending to do a couple more subjects through OUA as they are provided by RMIT and will count towards my Advanced Standing. Whether I work in SP2 will depend on when they get back to me on my application to waive the fee. If they refuse to waive it then I will just have to sit back on my laurels and wait until next year. Financially that will kill us even more, but there isn't really another choice - we can't afford to pay the fee which is outrageous to begin with.

I didn't wake up too well this morning. I had a very interrupted night and seriously didn't want to get out of bed. I would still like to be sleeping but the freaks next door have been making industrial noise since 7 am. When you add that to my depression, things really aren't very good this morning. I couldn't make a decision what to wear. I had to ask my fiancee to help me. I couldn't even decide what type of clothing I wanted to wear. On top of that I had to take the towels up from the line downstairs and managed to almost fall down the stairs, hitting my head on the wall in the process. Then I kept trying to put the key in the door in the wrong direction. I had major issues getting the garage door to stay open, and had to stand on a chair and push the door part-way back down again. I lost count of the number of times I dropped the washing basket. I really would like to just go to bed and sleep the rest of the day off so I can pretend it never happened. *sigh*

This is so stupid. I should be able to cope with what is going on. I'm struggling with everything, despite the fact that I should be able to cope. I'm seriously losing the plot over nothing. Yes there has just been disaster after disaster since I got home three weeks ago, but a lot of it has been fixed or is in the process of being fixed and in the hands of something beyond my control. Why am I such a failure? Why can't I cope? God, now I'm starting to take a "poor me" attitude. I really don't feel that attitude is right to describe what is going on right now, but I've just had enough.

So sorry. I shouldn't take my crap out on anyone else.

[crazykat]

I am glad you got some of the university stuff sorted out, but good luck with getting the rest sorted. Your not a failure hun, you told others what is going on and I think you should be proud of that as I know it can be hard to ask for help sometimes. Hold on there xxx