insights into me

mastectomy a go date

2011-08-17T22:25:00.002+10:00

I have a date for the surgery.

Tuesday 27th September.

Scared? Yes.

Relieved? Yes.

Surgery worth the result nearly annihilating my breast cancer risk? Yes

Frightened of spending the rest of my life alone and breastless? Yes.

Angry at myself for being frightened of being alone? Yes.

Whirlwind

2011-07-04T20:50:00.002+10:00

it is like a whirlwind

a rollercoaster

down

sideways

upsidedown

rested

tired

agitated

anxious

.......

waiting for news

2 lots of news

nightmare

.......

surely we have had enough bad stuff now

surely the good stuff is about to begin?

All at once, spiralling out of control

2011-06-30T22:28:00.005+10:00

On the same day that I find a 4cm lump at the top of my left breast the surgeon rings and says he has found a reconstruction surgeon who will do the reconstruction for me with no gap.

I AM SO PLEASED THE MASTECTOMY IS FINALLY HAPPENING. I have an appointment in a fortnight to see him and I assume the surgery will be about a month after that? Not even that long.

......Back up a little there....I found a 4cm lump. There was no lump 6 weeks ago when I saw the breast surgeon????

Saw my Gp yesterday afternoon, he had a feel, gave me a referral to get the lump ultra-sounded.

After many calls found someone to ultrasound the lump today. She insisted on doing the whole breast....whatever...i told her my annual mammogram was booked for a week away, and please just do the lump, like the Dr asked on the referral.....

I have a 4cm lump....No. No. No. No. No.

Not now. I have been doing all I can do to avoid getting breast cancer.

Radiologist didn't say much. Did say it wasn't a cyst.

Seeing GP tomorrow at 2.30.

Left a message with the breast clinic. They were the ones that told me to go to GP.

It's like a whirlwind. I don't know what came first. I don't know what to do next.

Catastrophising? I don't think so.

I've had a gutful of this....what's the word....TORMENT

I want the torment over. Done. Dusted. Zip.

Something is just not quite right....

2011-06-23T15:56:00.003+10:00

Something is just not quite right with my son. Yes, we all know he has autism, but you know if there were a cure I would strongly recommend to him not to line up for it, because it is an intrinsic part of him. He disagrees with me and ultimately it would be his decision.

However, there is something not quite right. He's gained weight, he is moody, depressed, losing cognition, aggressive(again) and well... he's just not right.

He had the massive 2.6cm gall stone removed. He had a test to see if he had Cushing's disease. Negative. But something is not quite right.

Our wonderful GP did a full set of bloods and his tests have lit up like a christmas tree (to quote my BFF). Most concerning is the high prolactin levels that has me extremely concerned....hmm lets pick between causes:

a pituitary tumour or the daily medication he's taken since he was 5.

He's off meds, repeating the tests after 3 weeks med free.

I am soooooooo scared. As my GP said, our little family has enough to cope with at the moment, we don't need this.

Bilateral Mastectomy? Still F#@!$%^ Waiting!

2011-06-23T14:13:00.003+10:00

I can't believe it. I actually made jokes about this. I still have not had my mastectomy. The Family Breast Clinic called today to check that I had had the mastectomy, because if I hadn't, my mammograms and ultrasounds were due.

I'm booked for Thursday 14th July.

I remember making the decision to have a bilateral mastectomy and being so pleased that I had had (what I thought were) my last lot of mammograms and ultrasounds.

Then I had the scare with my MRI results going missing for 3 months and needing a biopsy and waiting for the results (another fibroid adenoma) and again thinking, thank God I don't have to do this any more.

Fuck it, fuck it all, here begins another cycle of screening and waiting. I know as humans we, and definitely I, tend to catastrophise, but hey, three first degree relatives and one second degree relative does not give me good odds.

I made my decision to have these time-bombs removed quite some time ago. It is considered, made with information from geneticists, breast surgeons, GP, my psychologist and psychiatrist. They all support me in my decision. It is not a decision made by emotion and not considered. It is a considered, rational decision.

Yes, I am aware of what I will be doing. I will not have breasts. I will either have a flat chest, or I will have implants. These implants will be under skin alone, they are likely to feel cool and certainly the skin is not likely to have much feeling at all. I will not have nipples.I will be disfigured. I will never look or feel the same. I would rather look and feel like that than have the spectre of breast cancer hanging over me. Extreme? No, I don't think it is. Neither do any of the medical practitioners I have consulted.

If you want to come to me and argue that I don't know what I'm doing or tell me that I will regret it? I would ask that you look at your own reasons for saying that and look inside yourself. I have made a considered decision, with the blessings of every medical practitioner I've consulted.

Why have I not had the mastectomy? Two reconstructive surgeons I have consulted consider me a surgical risk because of my weight. The 2 breast surgeons I have seen think that this is bullshit and that I am not too overweight to handle the surgery. One has found me a reconstructive surgeon, but his fees are so high I can not afford to get the surgery. The second breast surgeon operated on one of my sisters. He has agreed to operate on me with no out of pocket expenses and has told me to give him a little time to find a reconstructive surgeon who will do the same. It has been about a month, no word. :(

If my unemployment lasts longer than a few weeks, I will have to suspend my private health cover until I am bringing in a wage again, so I hope that I get a job soon.

Again, I really thought it would have been done and dusted by now.

Prostheses

2011-05-01T22:39:00.002+10:00

I sort of half wish that we had kept all of mum’s breast protheses after she had died. They fitted into a special pocket she sewed into her bras. The early ones filled with cotton, then lambs wool. The lambs wool were good, cause she would use them as a pin cushion as she sewed and the lanolin kept the pins in good condition. Visitors were shocked when she went to the door with a breast full of pins! Later they were made from whale oil. These were the first ones that really looked and moved like a real breast. Later it was silicon, complete with what looked like a nipple.

Can you imagine a picture of them all lined up? She lost her breast at 43 (my present age) and passed away in her 69th year. Having a reconstruction just wasn’t an option. She was totally mutilated, it was a fucking awful scar.

Glassy Eyed

2011-04-30T10:40:00.004+10:00

Five weeks is a long time for your (MY) psychiatrist to go away, to Germany no less. Since early 2009 when she formally diagnosed that I have type 2 bipolar disorder I have seen her EVERY week, Fridays, 4.30pm. I'm her last appointment for the week. We've had that time because for most of that time I have worked, and it is easier for me to leave early at the end of a day then to have an appointment in the middle of a day. Easier to explain. I say I have a regular medical appointment every week, this day, this time and I will make the time up earlier that day or on another day.

For 6 weeks before she left we talked about her going away, for 5 weeks and what was I going to do. She thought I would be ok, no need for appointments with her colleague, not even a mid way check in. If there were to be an incident, I knew how to get to the hospital, which one and I always can have a good talk to my GP, in fact my GP knows how to get me into said hospital as well. I was meant to be starting a new job, not a good job, a 2 month contracted job, but a job that would allow me to pay the rent on the following Monday, and she knew I would be looking out for better work. The main thing was that I would be able to pay the rent, while looking for something better, something that would give me a feeling of value and that all important feeling that I am making a change.

The job lasted a whole day. They didn't even pay me. I didn't even push to be paid. They were a strange organisation that paid parents to look after their own children. That and a few other unethical practices were ringing alarm bells LOUDLY. I had to call my centrelink job agency during the day to let them know I had a job. They heard me say "yes, well, it pays the bills" when asked why was I doing a job that paid so low, and assumed from that I was not going to stay (hello...2 month contract) and they want someone who will stay, and can I please not turn up again tomorrow ok??? WTF

So I stayed home, I stayed home except for getting groceries, and I applied and applied and applied for jobs. I applied for jobs, slept and applied for jobs. In fact, even today, I think I have 15 active applications. These are not jobs where you just send in a cover letter and a resume, they are jobs that ask you to address 6 to 8 to maybe 10 selection criteria (a page for each is usually acceptable). I apply for anything I might remotely be educated and experienced for, even if I don't really want to do it. I even applied for a job that would involve being locked in a secure facility with sex offenders. I even go to interviews, because of course, for most of the jobs I'm applying for I'm over qualified and experienced, but I just want to work so that I can pay the rent. The jobs I'm getting interviews for I'm even being driven to by the job agency because strangely enough I've been assessed as needing "extra" assistance, but since I've been able to apply for jobs without their assistance, this is the only practical thing they can really assist me with. Certainly helps with the anxiety.

In amongst all of this my sister comes to visit from The Netherlands. She's a clean freak. I let her come here, she left within half an hour and didn't even finish her cup of tea. My house cleanliness isn't at OCD levels like it used to be cause I'm medicated to my eyeballs and can only find time to work/apply for work and sleep.

My daughter came home to live, after 2 years of living away from home. This is a good thing. Very good thing. Just would be nice if I had a job and money so I could spoil her and we could do nice things like go to movies and have coffees etc. All I've had the energy to do with her is snuggle on the couch with her. Maybe this is a good thing. She had chest pain this week, bad enough to make her come home from work early. I drag her to the GP. She thinks this is a bit strange, but shit, I want to do a bit of mothering on her, I've missed 2 years of it, and chest pain is never to be ignored, specially with the biliary problems we seem to have.

Another thing I realise in this time is that I can't have my DIEP reconstruction of my breasts under any circumstance post mastectomy. After long thought I realise I may as well get it done through the public hospital system, which will save me lots of money. I just have to wait a little longer. I had to wait a little longer anyway, since all the money I have saved up for the surgery is GONE.

My son's health has plummeted. It is nearly unknown for a 20y/o to have a 2.6 cm gallstone, but my boy does. The pain he experiences must have been exquisite. He never complains of pain, yet he was writhing on the floor. Awful. I couldn't fix it. Nor could the hospital. Any way. This week I organised a referral to a private dr who will hopefully operate within the public system. Hell, she might even write it up for the medical journals. The GP has written on the referral that he has metabolic syndrome. Already. At 20. Breaks my heart. But I can't fix everything for him any more. He's an adult now. He has autism. I have "fixed" so much in his life so far, but this is something only he can fix. All out of my control. It's his control.

I had an interview for a job I wanted. Managing a program, similar to my last job. I was not successful. Feedback was bla bla interviewed will, strong pool of candidates etc. Let's call this company "a".

I apply for a job with company "b". Am interviewed by phone at night and asked to come in as soon as possible for an interview.

Company "a" ring with offer for a job, designed for me, 6 month contract, pay $15,000 less than other job I applied for with them, and same less with company "b". I say I can't accept offer for another week, because I'm waiting on company "b"s offer. Company "a" ring back within 10 minutes to offer $4000 more. I say thanks, that's not why I'm stalling, still can't give answer for another week. They are cool with it.

I go in for interview with company "b"and they are keen. They ring back that night and say are still keen but have to go through some motions. I contact them 4 days later. Still keen, still have some motions.

Company "a" want an answer. I ring company "b", person I need is in meeting, I leave a message saying I'm still interested but I need an answer soon.

I wait another day and company "a" ring again. I ask for PD to be sent through. "Quality Systems Manager". I ring and accept. Email of acceptance comes though, "Quality Systems Officer". Fucking arseholes. I have to pay the rent. I start Tuesday.

But I have to continue to look for a job that is permanent. I need a job that will support me taking a little time off when I have the mastectomy. I can't keep putting it off because of work reasons. If I do that I'll put it off till I damn well have cancer, and that's defeats the purpose doesn't it?

If company "b" rings with an offer I will walk straight out of company "a". I have to look after myself. It's not something that sits easily in my conscience. Plus the job is better, more interesting, permanent and has room for growth.

I had to ask a charity to pay my rent. I delayed other payments hoping I could manage, but I couldn't. Fuck I hate asking for help. I hate asking for help so much that last time I was this way financially I thought the only answer was suicide and something worse. I was sick, I actually didn't think I had anyone to ask for help. Maybe that's why Dr H thought I was ok this time. She was right I suppose. I problem solved my way out of it.

In this time Dr H has been away I have asked for help, I have talked to friends (so what if I met them on twitter, they are friends), I have taken a LOT of diazepam, I have had one instance of self harm (minor, but significant because I've not done it in so long), I've actually gone out and had dinner and drinks with old work colleagues (I pretended to be "fine", it's easier that way).

I think I've done ok?

Eek

2011-04-20T23:14:00.001+10:00

Phone test

Finally!

2011-04-20T18:12:00.007+10:00

committed

-friends that stop talking to you when you are aged 15 and the impact it has on you when at 42 they say hi after all those years

-breast cancer, not only my mother and her sister now, but also two of my sisters and 3 mastectomies within 2 months?

the two topics are out now, and I will address them in future blogs soon

I wrote the above over a year ago. Goodness me I am slow to move.

My mastectomy and reconstruction are now organised, I just have to wait for the public system to kick in. I am not going to let this health issue bankrupt me. I'm not going to be able to have an ideal reconstruction, but I am able to have something, implants are not ideal, but are apparently the only option. I am used to the idea. It is going to be hard, I am going to be mutilated, but I will reduce my risk of breast cancer, and wasn't that the point? I will look ok clothed and any man that is either already in my life or will come into it in the future will just have to take me as I am. I've always had a philosophy like that, so nothing has really changed. I will be around for longer to support both of my children, because my job isn't finished yet.

Friends that stop talk to me when I was 15? I finally got the courage, via facebook, to basically ask WTF? Would you believe he thought it was me that stopped talking to him?

My. Whole. Life. Changed. Direction. Because. Of. A. Stupid. Communication. Breakdown?

Yes, yes it did.

Oh the joys of mental illness. I can look back at the past with regret? Yes...and no. Life is full of choices, and I made mine. I made them and my life is a different life to that which I dreamed of at 15. I'm not an opera singer. I sing instead in the Queensland Choir and work in the community services sector. I have two gorgeous adult children and I love them with all of my heart. Admittedly, I love that I am nearing the end of my parenting "life", and not at the beginning, as some my age are.

I am slowly clawing back my sanity. I hope to be in a fantastic job again soon. Hey, you never know, I might even get a social life?

I'm ok, and I'm working on remembering what happy is.

Recovery

2011-01-15T21:29:00.003+10:00

Recovery, I really hate that the word implies that there is an end..that the bipolar has gone away and I'm all better now.

It hasn't gone away, I'm not all better now, but...what I do have is a different life. I work, I still have a job in management, I still work in disability, but now, coincidentally work in mental health. My life is different. My life has taken a slow pace. I am doing my job, doing it well and my boss is always astounded at the volume of work that I get through (he should have witnessed me when hypomanic).

My life at home does not look anything like it used to. I do the bare minimum. My lounge and kitchen are clean and tidy, my bedroom and ensuite are clean and tidy. Rhys can live in squalour if he wants to, that's his problem not mine. I rarely do anything that would be considered social. I sleep a lot. Sometimes I get up on a weekend morning, have a coffee and go straight back to sleep on the couch for another 2 hours. Then I might have an hour's nap on the couch at 4pm. Then...TADAH...I sleep 8 hours over night.

I figure my body and mind needs this sleep so that I can cope with going to work and performing there.

I don't panic very often, I don't get angry often and I'm the calmest person at the office. I seem to be able to take significant blows and be able to bounce back immediately. Take this week, I saw the reconstructive surgeon this week, then the next day there was a flood! No problem. Work from home, counsel the staff by phone. It is all ok, no problems.

There is turmoil, inner turmoil, but I can cope with it. Something/someone pushes my buttons and I immediately recognise it for what it is and respond calmly and rationally.

I am in a different place today than I was a year ago and I can only hope that in a year's hence I will have more energy. If I don't? It's ok, I will be ok.

apologies

2010-12-18T11:51:00.002+10:00

Music is a blessing in my life. What a joy to join with other people and sing. The performance of Faure's Requiem was wonderful and I actually had two people in the audience, one family, one friend. I was a little disturbed that I lost my ability to stay on note for the last page, but I was tired. First time in my life that I've had that happen though, but hey I'm getting old, I've turned 43. The evidence stares back at me when I look in the mirror. I've never been one to primp or preen, never wear makeup, so I suppose it's my own fault that I sometimes get taken by surprise when I do look.

Lately Dr H and I have been talking about self esteem. I am totally aware that mine is a little low, but for the inside of me stuff, it is getting better. The outside of me stuff isn't. It will be challenged though, and soon.

I've begun the process of getting a bilateral mastectomy and reconstruction. It's hoped to be performed in the one operation with a DIEP reconstruction using my own flesh. SO... mastectomy, tummy tuck and recon from the flesh of my tummy. No more nipples...but no more hanging tummy. The breast surgeon was really nice, said that he has performed the operation for lots of women with less family history than I have. D's genetic test came back finally too. No brca1 or brca2. This changes my decision in no way. I made my decision to have the surgery long ago. I see the recon surgeon on the 10th of January. It's a 15 hour operation, so getting the 2 surgeons together will be the tricky bit. I'm hoping the surgery is done by end of February.

End of February... the job I have now is a maternity back fill. She's due back then. The job has had it's challenges, but it's been wonderful to have a job where I am appreciated and valued. To have that part of your life settled makes such a big difference on the rest. Like a stable platform from which dives can be taken.

Lonely? I'm still lonely. Yes I still talk to him every day. I'm trying not to analyse it too much and just get on with living. I still have no energy left at the end of the day, nor at the end of the week, but at least I have energy to work, and to do my work well.

Christmas? This time last year I was so sick. The year before I was even more sick. This year I'm doing ok. Let's hope next year I'm doing even better?

time goes by, no change...happy world mental health day

2010-10-10T20:52:00.003+10:00

I still think I need to have a prophylactic double mastectomy. Dr H doesn't think it is an emotional decision. She thinks it is a decision based on an extremely strong family history.

Organised to talk to a geneticist. I don't think whatever he says will change my decision.

New job. Somewhere in the back of my mind I still doubt whether they really want me there. Is it irrational? Is it paranoid? I don't trust my own feelings/judgement any more. I'm too scared to be confident in case it all gets dashed out from under me.

Went to choir rehearsal for the last 2 weeks after not going since ANZAC day. It's hard to go, really hard, but I can't spend my life on the couch...literally. We are doing Faure's requiem, 14 years and I still know it note for note. What do they call that? State memory? It's like riding a bike...

I feel ok. More ok that I have felt in a long time. Ok means going to work, coming home and sleeping, waking up and going to bed, sleeping again then going to work. I'm sad that this is what I consider to be ok. Is this as good as it gets?

I'm lonely. I still communicate with him every day. I don't know it it's a good thing or bad thing. Is it keeping me from being able to develop another relationship? He's the only person I can talk to about the mastectomy at least. I look at the men on the dating sites and they all sound like dickheads.

I've not been blogging. I've not been doing much at all.

At least I go to work.

So...Happy mental health day...as good as it gets?

:(

2010-07-11T00:17:00.002+10:00

I'm lonely.

One (if not 2) of my sisters is dying of breast cancer and the only support I have is my 19 year old son who has autism who has no theory of mind.

I have never felt so god damned alone in my whole life.

Of course this is impacting on my (bipolar) behaviour. It would impact on anyone's behaviour.

I sit crying at my desk, tears literally flowing so fast the paper looks like I've spilled a cup of water over it and NO ONE cares.

I look at a picture of my sister closest to me in age and it is like looking in a mirror of my own fate. My mother and her sister had it too. I'm not exaggerating the seriousness of the issue. This particular sister's white cell count has been zero for nearly a week and she looks like she is dying, no hair, eyebrows etc...she looks like me too, it is like looking into a mirror.

What am I meant to do? Just get them cut off now? Yeah? Great luck finding a new partner then, "42 y/o woman, bipolar, has autistic child and has no breasts...looking for life partner"

Right.

Hard Work

2010-06-27T19:07:00.007+10:00

I'd have thought working at an organisation who's focus was the carers of people who have mental health issues would have been a safe working environment for me. 3 months probation is now 6 months probation due to what are my bipolar problems, the things that I take medication to control and see my psychiatrist every week to work upon. Absolutely no fucking understanding. I was absolutely gob smacked to be truthful. The EO has worked in mental health for at least a decade and she actually didn't get the irony of the discrimination she was displaying.

At first I got angry. Then I realised the anger was only going to eat me up inside and wasn't going to hurt anyone else but myself, so I decided to let it go.

It is hard to let things go when you have bipolar disorder. There are many things in life to be angry about, but in the end what does it matter.

It does make me want to turn the other way and just give up. Why bother with anything, why not just leave my car door open just a little bit and drive really fast into that pole or tree? Nothing will change, I have a mental illness/psychiatric disability and will always be looked upon by society as a second class citizen. If an organisation like the one I work for can't accept me for who I am and the eccentricities that come with that (that would also increase my work output) the world is fucked. Instead I have to change my whole regime of drugs so that I fit their idea of an ideal employee.

Fuck, fuck, fuck , fuck, fuckity, fuck.

committed

2010-03-16T23:06:00.002+10:00

-friends that stop talking to you when you are aged 15 and the impact it has on you when at 42 they say hi after all those years

-breast cancer, not only my mother and her sister now, but also two of my sisters and 3 mastectomies within 2 months?

the two topics are out now, and I will address them in future blogs soon

fine lines

2010-03-16T22:52:00.003+10:00

Fine lines indeed. Apart from the ones around my eyes that is.

I'm tired. Very tired. I think just holding it all together, performing at work (and enjoying it) is exhausting in itself.

This week is the last I will utter "I'm still feeling my way around the job." I really want to get stuck into the nitty gritty. I have plans, I want change and I can see how the organisation can improve with me there doing what I do best.

For the first time in a long time I am excited, unfortunately the energy levels are struggling. I will get there.

Huge family health issues hit hard last week, VERY hard. That is for another blog. (hmm 2 topics I've deferred, is it because I don't want to face them, or feel there are more important things to blog about?)

I am a coward...

employment

2010-02-24T22:49:00.007+10:00

I got a job. I finally got a job. I thought it was NOT going to happen. I thought I was too crazy to fool any panel into giving me a job. Goodness knows I went to enough interviews to start wondering if I had bipolar tattooed on my forehead. got a job. I got a really really good job. Operations and Quality Assurance Manager for a large community organisation. I got a job. From what I could make out of the organisational chart I will be 2nd in charge. I got a job.

Bit repetitive aren't I?

The organisation works within mental health/psychiatric illness/disability. I can not disclose. Hence the two pictures, one with my face fully exposed, raw, no makeup, as it always is. Contrast, one with my hair covering part of my face. Maybe I need one that shows no face at all, just a body part.

I have never been ashamed of my face, no makeup, no mask for the world for me, I am what you see. This goes for my life as well. I am honest and open and I've never been afraid to expose myself.

On Monday this changes. It is going to be really hard.

Celebration of David

2010-02-17T23:21:00.006+10:00

My dear friend David died last Thursday evening. He was 27 years old. He was with someone who had known him since he was very young. There are sayings about nobody wanting to die alone. If that is the case David passed trusting that this beautiful person, who he knew so well, would be there for him when the time came.

I believe that the normal human condition contains all sorts of human beings, some of whom happen to have disabilities. David's was Cerebral Palsy, and in his case he had little voluntary movement, was unable to speak and he communicated through body language and facial gestures. David was so much more than this paragraph, but this paragraph is added as an afterthought to perhaps clarify things that are written further into the blog.

I met David through a work role and through that role got to know him quite well. I was one of the lucky ones. I mainly got to do the nice things with him. We went to parks, Botanical gardens and Mt Cootha were favourites, the gallery, museum, movies, shopping (of course this involved a coffee occasionally) going to the bank, walking around his local community, swimming (commonly referred to as hydrotherapy).
Some days when David was not feeling very well we would read together or listen to music and he would get to listen to me sing along to the radio or cd.

One of the things I noticed at David's house was that in the photos that were displayed around the house, when it was a group shot, David was always sitting on his own where his house-mates always had family or friends sitting with them in the photos. I was told that David had no family. None, zip, nada. (the funeral notice in the paper today said "friends of David are invited...") Anyway... once I found that out, I endeavoured to be at the house, even just for a little while on those days where his house-mates and /or David were celebrating that at least I would be there to be sitting beside him, to be there for him amongst the celebrations. (By the way...the other "D's" 21st birthday party was a riot!) My son attended one of these gatherings and took a bit of a shine to David. One of the ways my son expressed this was to burn many music cd's, spoken book cd's and some annoying "game music" cd's (that last one's a long story in itself).

Now... on to the photos above. I sing. When the pictures were taken I had only just recently started singing again after a decade's "holiday". I asked permission for David to attend a The Queensland Choir's rehearsal of Handel's The Messiahwhere we had the orchestra and it was granted, by both the choir and the organisation who looked after David. I assume, for the organisation, it was just an unusual request, and they were thrilled to grant me permission to take David out at night for the first time, ever! I arrived a little early at the house to pick him up, just in case any clothing adjustments or special requirements needed to be taken care of , but the person who has known him the longest (I didn't ask for her permission to name her here) had him attired beautifully in red which made him look handsome indeed. There were some special instructions about medication administration and the feeding tube and we were off on our way. I have to admit David did look a little ....unsure as we taxied into West End. The only other times he had gone out at night were for hospital visits. We got to the ABC studios, parked ourselves at the front edge in case of a need to exit and settled in for the night. Well, see that happy, ecstatic, joyful countenance? It was there for the whole rehearsal. He even sang along in parts. It's a good thing I know the choruses from memory as I had to adjust feeds and administer some medication and flush the tubing (my fellow choristers did stare a little, but not rudely, more like they had just never been exposed to someone with David's level/type of disability before). I took the pictures at the end of the rehearsal, and even though they were only taken with my phone camera and very much a candid shot, they exemplify PURE JOY to me. On the way home in the taxi he smiled, smiled, smiled, and fell into an exhausted sleep. Have I mentioned that David was one of the happiest people I have ever known? When he was sick, yeah, he was miserable and didn't smile, but hey, the rest of the time, he was one cool happy dude. David taught me a great deal about being happy, despite anyone's circumstances there is still great joy to be found.

Whether I was working with David or just spending time with him I met so many people. At the parties I would meet all of his house-mates' family and friends. If we walked around in his community there was always someone to stop and have a chat to David. We would always make a friend in the gallery or museum (David smiled when I would read out the labels near the exhibits and this would often draw people's curiosity, break the ice and begin a dialogue). At the rehearsal people came up, to speak to David, some to speak to me, which I redirected that they speak to David. By working with David, I met and spent time with his "team", his case manager, even met his speech therapist once. One person David has introduced me to has been of great support to me recently through some difficult times of my own. I have thanks to give to David for being the catalyst for that friendship. I actually tried to sit down and figure out how many people David has been a conduit to me knowing them? I gave up... it was too many to count.

The main character in the Douglas Adams book, Hitchhikers Guide to the Galaxy, Arthur always had a towel with him, when people asked him why did he carry it around, he said a towel is the most important item a hitchhiker can have and was a multipurpose tool For those of you that knew David you will understand this reference. I never took David anywhere without a towel.

David, the body you had allowed you to listen to music, to see the light flickering through the leaves of the trees, to feel the weekly massage and enjoy the hydrotherapy. I still am unsure of what I "believe", but I know you are now free of a body/shell/casing that caused you pain and vomiting, that you could not control the movement of, that prevented you from speaking among many other things. You led a blameless and pure life and found pure joy where others would struggle to. I hope your body is straight and that you can speak, sing, eat and drink with the angels.

I thank you David for all that you have taught me.

To follow...

2010-02-14T01:16:00.002+10:00

At this point initial thought is "Fuck.....David died"

I am totally thrown by this (yes, yes, he is free of the body that restricted him bla bla, I know all the platitudes)

I have to work through this event for my self, my bipolar self, my career, my friends, my family.

David's death has had a profound effect on me, even initially.

I will write, not now. Still at brain stage and disbelief.

abovegroundday

2010-02-10T00:48:00.002+10:00

today

today I wasn't too pleased for it to be...

well...you know...one of those

above ground days

& no one i tried to express this to

wanted to hear

nor listen

just another day

2010-02-09T23:49:00.003+10:00

very anxious day today

no particular reason

well, not that i can ascertain

i am sure my family think what's written in the picture is true

i'm sure other people think it is true

i wish it were true as well

i have absolutely no control over this

winge

2010-02-07T00:55:00.001+10:00

I feel like such a complainer sometimes.

The only time I have something positive to say is when I'm FUCKING HYPOMANIC!

I can't fucking win.

does it ever end?

2010-02-07T00:19:00.003+10:00

Pdoc appointment yesterday

(as bleeding usual)

{Must figure that into my job applications, the new place I work can not be too far away from where she is}

More of one medication

Less of another

The medication the GP gave me for the gastritis doesn't work

I'm assured stress has nothing to do with gastritis (as previously thought)

Another interview this week

Another job not offered to me

Encouraged to apply for others with them

Good organisational fit

Applied for job with a most ironic focus

She who I can't mention speaks to me nicely

She who I can't mention speaks to me with venom that kills

She who I can't mention speaks to me nicely

I am meant to be the one with Bipolar Disorder here

Yes I keep a mood chart

Thank god because I don't want to remember anything

I just want to live

I want to push everything back into its little box

Go to a normal job

And forget that the last 18months happened

Please...

all over the place me

2010-02-02T22:44:00.004+10:00

Ok, so we ALL agree I am absolute crap at identifying ,my emotions

(What pdoc? You mean there are more emotions that happy and sad?)

Part of my therapy (and path to healing) is to really get deep inside myself and figure out how I feel, rather than just say to everyone else AND myself that I am fine.

Late yesterday my pdoc left me a message to call her. I tried a few times today to no avail, but I did leave the phone by my side to grab it if she did call.

Stupid me, when she did try to call it was bleeding flat, all 3 times. By the fourth I had enough charge in it to say my mobile number and she called back. Valproate levels were low, but ok, if I was still feeling ok. I replied "I'm actually not ok, I have agitated depression and mania all at the same time" (I usually say I am irritable, or sad, or manic, or that I just don't know but I never really put it so concisely and together and for it to be so true a reflection of where I am at.)

I also added I had interviews, I had rejections, I had things happening at home I was not happy about, my car was playing up, no steady income. I then said it isn't just the levels, if you want to tweak...ok to get me through till Friday when I see you, but my situation is a factor today.

I got off the phone and was really proud of myself.

Tomorrow I will probably just go back to saying "I'm ok, I'm fine" so as just not to upset anyone. Hey, it's not like anyone in my family realise I truly have a REAL illness.

mixed me

2010-01-30T23:44:00.003+10:00

Me? I'm all over the place. Both my pdoc and psychologist have agreed I am excellent at identifying when I am depressed or even just sad, but I am CRAP at identifying when I am hypomanic/happy/mixed. I agree. Unfortunately in the hypomanic/happy/mixed WHAT EVERS I tend to make mistakes. Noooooo I hear you say?

I love people

I dislike people

I make decisions I regret

I am not perfect

I make decisions that are right

I push people away deliberately

I hate my body

I push people away with out realising

I encourage other people to love their bodies

I hate my body-repeat

I have a love/hate/hopelessness relationship with my family

I try to make friends and come across as manic and weird

I question other people's motives when they try to make friends with me

It all gets hard to keep straight in my head

I can't work 24 hour shifts-puts my bipolar symptoms on edge

I need full time work

Full time work will not be the answer to all of my problems

Some days I don't know where to start, so I don't start them, I stay in bed

I'm ok, just can't get my head together

I'm not going to hurt myself

The issues are just all getting slightly overwhelming

Medication adjustments too, NICE

Is this going to be my life from now on?

Jeez......medication.....again

2010-01-10T22:36:00.002+10:00

Today I am reminded of how much we are held mercilessly by the companies that produce our medications. These medications are not ones we take by choice, nor choose to take lightly (with pdoc's recommendation). We place our trust heavily in our pdoc's hands and hope for the very best.

I consider myself lucky that my pdoc cares. She cares enough to answer a pager call from my GP on her holidays, immediately, while I am still in my GP's office. She cares enough to come into the office on her holidays to make sure I am ok. She cares to ensure that my changeover from Lithium to Sodium Valproate goes as smoothly as possible. She cares enough that she wants me to take as few medications as possible. She cares that I am not just psychologically well, but that I am also physically well.

I consider myself to be a lucky woman.

Even after a few days I felt the effect of the Valproate. I stopped crying, the thirst eased a little and I felt "better". No paranoia, no intrusive thoughts, able to work long and difficult shifts, energy to function, ability to sleep. Some may take these things for granted, but to me and many others they are extremely important when not present.

Now I'm not saying I am cured nor in recovery or what ever terms people like to use. But I feel a little better. I believe thoughts of suicide will always be present, at the back of my mind, a sort of "what if scenario". Those thoughts have been there so long I would be very surprised if they ever disappeared.

I feel a little better, and boy oh boy, would I like it to continue on this upward trend.

Thanks, as ever, for reading.

Lissy

Polydipsia

2010-01-03T12:12:00.002+10:00

What a horrible horrible thing an insatiable thirst is. For the last few weeks, along with all the health problems I've increasingly been drinking more and more water/fluids. My preference has been for icy cold water first, then any other cold fluid. Going to the supermarket and walking down the drinks aisle was maddening. One Doctor suggested I just reduce my fluid intake, easier said than done when you take 2gr of lithium a day and have had chronic diarrhoea for 4 months.

It got so bad I ended up at my GP crying about my thirst. We looked at all of my recent test results, he called my pdoc and further blood tests were performed.

My lithium level had gone from .5 down to .2 then up to 1.2! No wonder I was thirsty. No wonder my mood has been labile. No wonder everything.

Lithium be gone, bring on the valproate.

I'm over having bipolar affective disorder. Anyone want mine?

Rumination, intrusive thoughts & honesty

2009-12-18T00:59:00.005+10:00

I only see my psychiatrist once a week. I am able to comfortably speak to her about how often I think about either suicide or someone killing me. She understands that it is not a cry for help, merely and expression of what I thought about that day/week.

I have had these thoughts daily for at least 20 years. I know I can't discuss them with most people I know without them thinking they need to ring an ambulance. These are not thoughts I can control, when I see a truck when I am driving I wonder if it is going fast enough to kill me if I drive under it. I look at my son's razor in the bathroom and wonder if I took it apart if it would be sharp enough do do a nice long cut up my arm.

I pack my medication up into a dosette box, because if I remove them from their packaging 2 times a day I often think are there enough pills in this bottle to kill me, along with the bottle of vodka in the cupboard.

I know my ex partner (we both have type 2 Bipolar Disorder) also had the same pattern of thinking. Why haven't either of us suicided yet? Because we are aware of the thoughts and we know we can talk about the thoughts with at least our professional caregivers (psychiatrists) with the understanding that it is not a cry for help, merely a statement of fact. We are also lucky enough to have each other still and other friends with whom we can discuss the thoughts without inducing panic. Our children keep us on this earth. and we get by day by day. Each day a new beginning.

I mistakenly thought that other people who had bipolar disorder would understand the statements for what they are. Not the case.

I don't have words today, but I have pictures

2009-12-16T23:56:00.005+10:00

THESE IMAGES ARE NOT A CRY FOR HELP OK? THEY REFLECT THOUGHTS/FEELINGS THAT I'M HAVING DURING A TRULY DIFFICULT TIME IN MY LIFE.

Powerful images via my friend BPD in OKC http://ajourneythroughimages.blogspot.com/

Ashamed

2009-12-12T21:20:00.002+10:00

I am ashamed. Through some fault of my own but a great deal of "fault" of someone else I received much less pay in the bank than normal. Today, 4 days post pay day my account is -50 dollars. The rent is paid for a fortnight but there are still more automatic payments to come out before I can next expect a pay. How much will that pay be? I have no idea as I am now going to be working casually until I can find a permanent job. I don't know when this pay will be, I assume 24/12 and I KNOW it won't be a full fortnight. Today I "found" nearly $300 of credit on a card I forgot. I also found 2 psychologist bills that I can claim a little from medibank private. I am so worried and scared about this I feel like my heart is trying to jump through the wall of my chest. I think I might just put my head in the sand, what do you think?

Also at fault was having an extra $450 on getting some of the medical tests done this week. Some things have turned up, but still more tests to go. It definitely shows so far that I am certainly not malingering. It's nice to know I'm not malingering, not so nice to be told about these chronic, and in my eyes, serious conditions. Pathology still to come back , also 2 ultrasounds as well. No wonder I felt sick.

My life is so fantastic! It takes me telling my daughter via sms that I'm going to hospital for her to reply. That's 2 replies in 3 months. Whoot. NOT.

I am scared.

I am ashamed.

Curse of lithium and stomach problems

2009-12-06T21:52:00.006+10:00

In September I saw my GP for the first time for what I thought was nausea and food poisoning. I had already had symptoms for 3 weeks. I was tested and treated for the big 3, and all tests were clear.

So I did what every woman does, I stopped wingeing and got on with my life ... with certain adjustments and PRN panadiene forte to cope with the obvious symptom.

Over the months the nausea just gets worse and I stop eating breakfast. Then I stop eating lunch. Then I start eating jam sandwiches or extremely plain food for dinner. Sometimes I don't eat anything at all and just have a glass of milk. I take daily doses of panadeine forte instead of sporadically.

I'm at the GP for something else 2 weeks ago and mention this again. Shift in attention was marked. Referral to Gastroenterologist. Gastroenterologist has me in his office for an hour taking an extremely detailed history, physical, psychiatric, medications, timings, family history, my own cancer history. He spoke of best case scenarios and worst case scenarios. Even the best don't look good.

What are we going to do?:

1. blood tests. (complete)

2. colonoscopy. (must book)

3. ultrasounds. (only if above fail to show anything)

4. gastroscopy (only if above fail to show anything)

I go see the Pdoc the next day. Get my lithium levels 0.2 down from 0.5. Dear sweet Jesus no wonder my head has been all over the place. Even with an increase of dose a few weeks ago it is 0.2. I'm surprised I haven't been full on hypomanic. But it certainly explains the emotional lability since mid October. Sooooooooo ............

I'm scared about my psychiatric health and the medications being ok

I'm scared about my bowels. The gastroenterologist wrote words like inflamatory bowel disease and tumour on my list of tests I had to get.

I feel really really ill

I don't have a next of kin =(

Lissy

Anguish

2009-12-03T21:58:00.002+10:00

The true meaning of the word anguish describes how I feel today. I don't know what to do, where to turn. People tell me to think of all my options before making a decision. Options?? The only option is to fucking DIE. Funnily enough I can't drive under a truck because there are traffic Islands on all the roads between work and home. DANG

Last week, I had to confess to the Pdoc that I had recently added a new genre to my music listening habits. No longer and I nearly pure classical (baroque), or some middle of the road contemporary stuff, NOOOO for me the TECHNO, hard , fast with lots of bass is unbelievable calming.

*Lissy just goes and puts some on to listen to while writing..good idea*

Pdoc asks is the music slower or faster than the stuff in your head? I had to think about it. I don't know much about my Pdoc but I know she enjoys string music, she doesn't play a stringed instrument. The techno is SLOWER than the stuff in my head, therefore I find it really calming and relaxing. WTF? I will not question and just accept the calmness, than you very much.

Last week I was agitated to the point of feeling a crawling inside my skin, wanting to cut myself to let the crawling/pain out. I have never self harmed before, and hopefully will not begin now. Bit more Lithium to the mix and an extra day off work, and I was ok. Then the crap starts again, I am expected to gloss problems over, accept that handling something in a culpable fashion is ok. I am meant to accept a huge monetary debt immediate payment now, when I gave them all the information on April 1, 2009. I don't have money like that, and my contract says they work it out and even it up every so often. Just like the "sure pay" for my electricity bill. I didn't fuck up here, they did! Why are the DEMANDS made on me for their fuck up? Are they embarrassed and this makes them feel better? The BIGGY, why the fuck can't I flex my time any more so I can go to medical appointments or if I'm sick, work from home? This was never a problem till I was diagnosed as having Bipolar disorder. I am using my annual leave going to appointments related to my DISABILITY? Is this not a human rights issue?

No wonder I've been nauseous for 3 months or more.

Again, this is not over yet.

twenty six years

2009-11-25T22:27:00.004+10:00

Something happened today that made me realise events happen in our lives, significant events. Sometimes these events involve the actions of other people. These events induce us to change the direction of our lives. The events are not the reason, they are not to blame. The events are merely a catalyst for a change of direction in your life, sometimes massive changes. There's a much longer blog about this inside me. It is not read to come out yet, it is too raw at this point.

lithium = new life

2009-11-25T20:35:00.004+10:00

Can the aliens please bring Lissy back.

Therapeutic level of lithium and your life changes for ever.

When a former partner of mine chased a diagnosis of Bipolar disorder after I suggested that he might have it, he began lithium therapy. The lithium worked well very quickly and I remember him saying to me that:

he didn't know who he was any more, he felt different,

is this what being normal feels like,

he had never been normal as an adult,

he didn't like who he was,

he didn't like who he was now

and the biggy..he had to learn who he was now.

I used to listen to him. I would reassure him that I loved him in what ever form he came in.

Two years after this I gain the same diagnosis. My biggy is the same, who am I as this medicated adult. Can the aliens who took me back and replaced me with this facsimile please bring me back? ................... I know, I need to learn to love myself in this form. Some bits of me I really like, some of the bits I don't really like. However it is me.

Love

2009-11-14T23:33:00.004+10:00

I love this picture. The exposure is all wrong, but the subject matter is so right. Elise could not have been more than 8 or 9 years old in this picture. How things change. For the last two months I have sent her a text saying "I love you." Until yesterday there has been no reply.

I thought I was ready to blog about this. But I can't. I'm sitting here sobbing. I'm still so torn up about it all. I will finish this one OK?

I love her so much. She doesn't think so. She was always the light of my life, always there for a cuddle and a kiss and a talk, always. Rhys was always such hard work. Elise was not work at all. Something I learned from my mother, everyone we love...it's never a case of loving someone more than anyone else, each love is just as much, it's just different.

The day she moved out was sort of just like any other day. I was on the phone a few times with her helping her fill in the forms for Centrelink allowances. Suddenly there was screaming, yelling, shouting and she was gone. I came home from work and most of her stuff was gone in her room. For a few days she still spoke on the phone, or answered my texts. Got to give her her birthday present. Cooler and cooler each contact. I made up with my best friend (her boyfriend's mother) and that was it. No more contact.

Every day (or nearly) I've sent a text saying "I love you". Every day she didn't answer it. I called, message bank. Always left a message though. Friday she answered "what are you doing on your birthday". I burst into tears. No answer since. It is exquisite torture.

I love her so much it hurts.

I love you Elise, more than you will ever know.

MISERY GUTS

2009-11-13T21:54:00.005+10:00

How come when I feel like the picture of the lady pulling her hair out (which I do today) I want touch/hugs. The old shoulder to lean on, protective arms, someone to wipe the tears.

It is not that I can't cope on my own, I can and have done for years at a time. I certainly don't need a man moving into my home without me realising, the last 2 men have done that and I'm still unsure of how it happened.

I have friends, more than I could name a few months ago. They are very good to me and for me. I still feel like there is something missing.

Yes I want sex (sorry, had to get it out), but more, I want someone I can vent with, who will listen to me, that I can listen to in return. Someone to hold me until the sobbing stops.

Misery guts.

That is all.

OMG do I really carry this around?

2009-11-05T23:13:00.002+10:00

Business card holder-for my cards

Business card holder for other’s cards

Purse with photos of the kids

Box of Ritalin

3 letters for Elise

Moleskin notebook

Enamel mirror

Letter from my boss

Letter I need to post

Do not disturb-already disturbed fridge magnet

Glasses and case

Tube of sorbolene lotion

Work keys

Home keys

Car key

Spare car key

Hairbrush

Roll on deodorant

Manicure set

Mini torch

Tube of soov

Pill box

Wet wipes

Eclipse mints

Extra mints

6 script repeats

Note to remind me of appointment

Bag of spare meds

Dental floss

Tin with 2 condoms in it

Purse

Coin purse

Satellite navigation thingy with case

Hugs Damn It

2009-11-05T11:02:00.003+10:00

I am not meeting my daily quotient!

Dang

Discrimination

2009-11-05T00:24:00.005+10:00

Naturally, I'm not a person who likes change (blame the 'tism as Rhys would say). As I gain years I become more and more flexible in my attitude towards change and, if you have seen previous blogs, have experienced great changes in my life over the last 12 months. I even get excited about it and look forward to embracing it now. But, it is still a little un-natural =)

Whether it is an effect of the bipolar medications, or the result of an undiagnosed sleeping disorder, I've had problems with alertness recently. OK, problems with alertness is an understatement, I get all blurry around the edges of my peripheral vision and I GO DOWN. Very scary when you are driving and there is no where to pull over, which is the case on my way into the office.

My GP wrote a certificate saying I was not allowed to drive and that accommodations in my place of work would need to be made TEMPORARILY, as public transport was not an option. My boss said he was unable to make the said accommodations and that I was expected to be at the office regardless. I might ad here my boss works from his home and for my whole employment I have worked alone, unsupervised with barely feedback, let alone supervision.

Stupid me found a packet of my son's Methylphenidate, researched how much I would need, dosed myself with that, energy drinks and real coffee and drove to work for 2 days straight. On the first day I spoke to my psychiatrist and she said to drop on of my meds in my bipolar cocktail. After two days of what is basically the drug speed (I took a massive dose, I don't want to die at the moment, in fact I very much want to life and have so much to look forward to) I felt absolutely dreadful, so decided to see my GP today. Another certificate, another 3 days off this week (silly boss, I could have been working from home).

In the past working form home has been encouraged and has worked well if there were sick kids, clients to visit close to home and medical appointments unable to be at then start of end of a day. Suddenly I need to be at the office to "perform the full range of my duties as quality assurance and programs coordinator and further more he isn't happy about me seeing the psychiatrist every week and expecting to be paid for it" I argued via email that all I do can be performed at home, that no one visits the office and some days the phone NEVER rings. I also mentioned the emails I sent him (dates included) that I had asked for permission to attend these appointments and that I received no reply and that I always worked more than 38 hours a week, therefore he was NOT paying me for being at the psychiatrist. I also mentioned the 6 months at the beginning at 14, 16 and 18 hour days to get the quality assurance done (not one noncompliance might I add).

Three days after I sent the email, he has not replied.

I have called Fair Work Australia, and the Human Rights Commission. If my employment is terminated, or I am forced to resign I have a strong case under the Disability Discrimination Act 1992.

Want to fully understand the irony? I work in the disability sector.

There will be more on this, I promise you.

Lissy

Hugs and Touch-Food for the Soul

2009-10-27T14:54:00.004+10:00

Always need hugs and touch.

I need to attain a daily quotient of hugs and touch.

give and take

2009-10-27T14:15:00.004+10:00

For many years I have been told by many people including family, friends, counsellors, social workers, psychologists and psychiatrists that if i continued to be a giver in all of my life roles it would take its toll eventually. The old “that my fuel tank will be empty” analogy. I suppose it is an understatement to suggest that the situation came to a head last November and I found myself in the Psych ward.

I’ve been waxing lyrically on this blog about moving forward and being excited, for the first time in a long time, about where my life may be taking me and not exactly knowing what that would look like, but excited nonetheless. With both kids’ independence, now I’ve decided it is time for me to be a receiver in at least one of my life roles. I don’t envisage it as changing in my work role. As Dr P says, “you are so good at what you do”. I envision, much to my surprise that Rhys will not be needing my assistance for as long as I had calculated. Elise is fully independent (I just wish she would communicate with me). I can see that in my friendships and intimate relationships things will change so that I can be a more equal partner and not feel guilty when I need to receive attention.

I remember how hard it was when Rhys was little and I couldn't cope, and that to ask for help was extremely difficult, but in the end I did ask. I had certain family members and a few friends that if I called and was incoherent and crying they would just quietly come and take one or both of them away so that I could rest and calm down. In the past two months I have particularly “used” one local friend, calling, texting and meeting up for coffee with her when I needed support (thanks LL...you know who you are). My online friends from all over the world are there at every minute of the day, what an amazing support group they are, on tap 24/7.

A few weeks ago happiness slipped up on me and taken me by surprise. I almost didn’t recognise it and asked myself if I could dare to be happy! I am ready to not just be a giver in my life roles, but in some I am ready to accept being a receiver.

I’m very excited =)

True friends

2009-10-25T22:27:00.005+10:00

These are pictures of my friend Christine and myself. When I first blogged about Christine coming back into my life she was just 20 weeks or so pregnant. She now has just over 2 weeks to go and it is all getting very exciting. Last week the midwives pronounced the baby healthy, happy and growing. The estimate for due date size is 7 and a half pounds! Christine has been sleeping over a bit lately. her co-tenant had made a threat to her (and the baby) and had been physically violent, leaving her battered and bruised. For reasons unknown to me they did not immediately move one of them out, so she spent some time here. Since then we've had at least one or two night sleepovers on the weekends. Lots of girly time and talk about the upcoming birth. Last week we even took Rhys with us and went to see a local band. I am still invited to be in the labour ward to help Christine.

I can not in words properly describe how I feel about her asking me to be there. It makes all the scary and horrible things that I faced in that workplace all worthwhile, because I got through to this one that I was there to help, my job was to make her feel safe and secure and could she please just trust me. (I also got though to others, but Christine is such a powerful expression of trust and love) I am so lucky to have her in my life, she has taught me many things. I can't wait to hold her son in my arms and I pray to whatever entity is looking after us that she gets to keep her son 24/7. She so deserves to prove her parenting skills.

#beatcancer

2009-10-18T23:57:00.010+10:00

Now, for those that know me I am a modest woman who does not usually wear clothes that display cleavage. This week I took some pictures of my cleavage and posted them on Twitter, in aid of #bcawareness and #beatcancer.

I WILL die of cancer. Why?

I am nearly 42 years old. I think my mother was 43 when she found a thickening in one of her breasts and promptly forgot about it for 6 months because we had family over from The Netherlands. BIG mistake. She had a mastectomy that involved also removing lots of glands, ray treatment and chemotherapy. She also saw a doctor in Germany, and when we got home she ate lots of apricot kernels, vegetable juice and from then on we NEVER ate any canned goods. She lived another 26 years and died of a completely different cancer.

I have been screened yearly for breast cancer since I was 23. Even while I was breast feeding. When you are "younger" this involves both mammograms and ultrasounds because your breasts are denser than someone who is older. In Australia it is also expensive for someone under the age of 40 to be screened as medicare will not contribute and all costs have to be met by the patient.

Two years ago I had my usual 5 hour visit to the screening clinic. A few days later I received a call and a letter informing me that I had a lesion and I needed to come back in for a needle biopsy. For one week I really, truly and honestly thought I was going to die, or at least face a double mastectomy. I talked to the kids about where and who they would like to live with if I died and told them about the biopsy and explained about Oma's cancer. The stress was unwarranted, I had a fibroid andenoma, non cancerous. Phew!

In 1999 I noticed a really small mole on my left forearm was bleeding, was itchy and had a scab on it. Whilst I was at the doctor for something else I mentioned this. He had a look, said it looked fine, but because the mole had broken three rules he would excise it for me. I was to come back in 10 days (or 7) to get the stitches out. So after the prescribed time I was sitting in the treatment room, the doctor got the stitches out and went off to find the pathology results. He took some time. When he came back in he explained he had to ring Sydney to confirm the results. The doctor actually looked whiter than me at this point. I will never forget the word he said "malignant". Once he said that I didn't hear much else apart from, "didn't get the margin", "see surgeon to get a certain area all around the mole excised", "ray treatment/chemo if that excision did not come back with clear margins". I ended up with a huge chunk out of my forearm, that still is dented. I was told I was lucky to be overweight as I would have needed a skin graft as well. Guess what?? The margins were clear. I had to go see a specialist Dermatologist ASAP (The only one in Tasmania at that point was in Hobart). He checked my glands, saw me frequently. Removed a number of moles he thought suspicious (all clear). I also ended up having a special picture taken that measured the amount of melanin in my skin. Funny, my family are all olive skinned, except for me. I have very little melanin in my skin and need to be extremely careful in the sun. When I moved here i was still on frequent checks for a long time. I am now finally on yearly checks but my GP humours me by excising a mole now and then. Getting a malignant melanoma made me realise life is short and prompted me to make MAJOR changes in my life. Without it i would never have got my BPsych.

Earlier this year I had some issues with my bowels. In February I had a colonoscopy. The doctor removed seven polyps, none cancerous, but they were the sort that turn cancerous. Need to get a colonoscopy every two years.

In 1998 my long term menstrual issues (I'm not going into details here folks, ask me if you are interested and we can discuss more privately lol) led to me having a hysterectomy, quite suddenly. I also included removal of my cervix. Malignant tumour. I was so shocked it took me quite some time to come to terms with the fact that I would never again be able to bear a child. I dreamed about being pregnant and having children for many years after, in fact I even had thoughts about it today.

I WILL die of cancer. The WHY is above.

P.S. Isn't it good I stopped smoking a year ago!

Lissy.

Please leave comments if you feel so inclined.

Dare to be happy?

2009-10-13T16:36:00.004+10:00

Yesterday I said the following on facebook

"Been a tough day psychologically. Up and down but not depressed or manic. Is this how "normals" feel? I'm to scared to be happy, too scared happy will turn into hypomania or worse. Best to just dull down all feelings than be happy..."

Strangely, today I woke up just before the alarm went off, and I was actually ready to get out of bed. The last time I felt like getting out of bed I was manically flying. The time before that just doesn't exist in my memory, although I am sure there were other times. I got up, turned the alarm off, performed ablutions, made breakfast, coffee. All was good with the world. Then I realised what had happened.

As I've mentioned before I suspect Type 2 Bipolar began for me in my early teens. I do not know what "normal" adult Lissy looks like. Ten months post diagnosis and I still can't tease the manic, depressed, just general fuckedupness from periods of "normality".

I do know that over a week ago I made some very hard decisions. Decisions that I'm still struggling with today, but every day the struggle lessens slightly. I am also sticking by these decisions and when i struggle I'm asking for help from my friends, whether they be online or in the flesh friends. Am I feeling different today because of those decisions? I think maybe at this stage.

I also know today, like magic, I feel ok. I'm not manic, I'm not depressed, I actually think this might be what normal feels like. I use the word normal lightly too. I think normal Lissy is a little bubbly(manic Lissy is extremely bubbly), quick with humour (manic Lissy thinks she is funny when she isn't), she smiles sometimes (manic Lissy smiles all day), she comes across a problem and solves it (manic Lissy thinks she can solve unsolveable problems), she sings in the car (manic Lissy sings loudly in the supermarket) Get the picture?

I feel ok.

Do I dare to think that I deserve happiness?

Do I dare to BE happy?

Time will tell.

Thanks for reading. I love comments BTW!

Body Image

2009-10-08T17:45:00.003+10:00

Body image is so very much tied to my self esteem. When I was born I was merely 46 cm long and weighed about 7 pound. I was a month early because my mother had a blood clot and the pregnancy was a threat to her life. I was to very much make up for being small at birth very quickly. By age 2 I was already taller than my best friend who was 4. We are still friends by the way. My mother was urged to make me skip kindergarten and go straight to year one due to my size. What a strange concept for today, but it was not uncommon then and my oldest brother was put in a grade higher. I was literally head and shoulders above everyone else. I was always treated as if I were older (that included having strange men followed me home from primary school). It was a case of thank goodness when I stopped growing at age 12, reaching 180cm (5"11'). I wasn't ever overweight until after I had my first child (and even then I lost the weight in 9 months reaching an anorexic 68kg) However I thought I was overweight. My brothers would tell me I was overweight. My class mates would insinuate I was overweight. The plain truth of the matter was and is that I was simply taller and bigger than everyone else.

Not so long ago I was looking at my wedding photos. Apart from the mulletish hair do and softly permed waves (it was the eighties folks) to be brutally honest I was drop dead gorgeous. On the day I worried that I was fat, I'm so sad about that now, because I truly was beautiful and couldn't or wouldn't see it. I remember wanting a certain style dress, and mum and my sister D gently explained to me that I couldn't have it because of my body shape. Bullshit??? I could have worn a paper bag and looked good in the shape I was.

Let's move to today. I am 41, turning 42at the end of next month. I've had 4 pregnancies, two of which went full term, I have gained and lost 30-40 kg many times over. Since I moved to Queensland in 2000 I have actually maintained around the same weight for the first time in my life. My body is scarred, covered in silver stretchmarks, my hair is beginning to go grey and the first wrinkles are appearing around my eyes and yes, I am overweight. Today my body tells a story about my life, it speaks of great joy,it speaks of two beautiful offspring, it speaks of great hardship, it speaks of sadness, it speaks of pain and it speaks of cancer.

My beautiful 20 year old body is gone. That body spoke of nothing.

Handel's Messiah

2009-10-01T14:34:00.006+10:00

I have been singing...well, seriously, since highschool. Singing is something that has brought me great joy, great sorrow, great expeiences and facilitated some great friendships.

Once Rhys was weaned I joined a choir after not having sung for 7 years. (My ex husbaned said I sounded like I had a knife stuck in my back when I was singing, so it sort of put me off for a little while). I stayed in this choir, as a mezzo soprano, which was also directed by my old high school music teacher, for 6 years.

Now we may have been a Tasmanian community choir, but we produced some wonderful performances including a combined choir event of Carl Orff's Carmina Burana with the Tasmanian Symphony Orchestra. Another highlight was getting on a bus at 3am to travel down the West Coast of Tasmania, stopping at most towns on the way. We completed the performances at Strahan on the beach at sunset. It was all just a magical experience, and also a long one, I recall the bus arriving back in Burnie around 3am....BIG DAY OUT. The choir naturally had lots of old people in it and I was the youngest member for most of that time. I remember when every so often one of our members would pass away. Always sad. The highlight of our year was the annual Handel's Messiah performance. We always chose soloists from within the choir and gave as many people as possible a chance to have a solo. I will never forget those days.

Roll to 2000. I move to Queensland, 2001 begin University, work work work the whole way through, always promising myself "I'll join a choir when I finish University." Well 3 years later I was still procrastinating, but I saw a notice about "Brisbane Sings Messiah", anyone could join in with the Choir and perform as long as you attended all the rehearsals. I signed up. Performance day was even my birthday, what could be better! I thought I'd best go sit with the altos (too many cigarettes) but halfway through the first rehearsals went and sat with the sopranos. I have sung the work as a soprano so often it is like my vocal cords just can't do it any other way. Unfortunately my vocal cords could no longer do the high notes, no mater how hard I tried, held my mouth, supported with breath, they just did not exist any more :( Despite a relationship break up and some upheavals with my son and giving up smoking just days before the performance I enjoyed it very much, felt like I belonged. I started crying uncontrollably when we got back to the rehearsal space, and I can't remember who, but to those two ladies that sat with me and walked me to my car, bless you and thank you. Two days later I was admitted to a Psych Ward and began the road to diagnosis of my type 2 bipolar disorder.

With the new year I decided that I would audition to join the choir permanently. I mean, the audition piece was part of the Messiah, and surely I could sight read and clap a few rhythms still. I SHOOK the whole audition. I explained I was probably an alto but I was going to sing the soprano line of the amen chorus. Maestro didn't bat an eyelid and announced I was going to be a first alto.

Boy oh boy, does singing again after such a long break use up some brain power. I couldn't sight read like I used to, I was singing alto and not soprano. But week after week it got easier and easier. Our second performance at the QPAC concert hall apparently blew the audience away. Always easy to blow them away when doing Handel's Coronation Anthem Zadock the Priest.

We started rehearsals for The Messiah this week. I sat with the altos, struggled, but coped. I also listened to the sporanos, and just as an experiment got up and walked over to them. I stood behind them and started singing their line. OMG my top notes were back, maybe even stronger than ever, top "A" even. If you are not a singer this may not mean much to you, but you have no idea what it means to me. Maestro said to sing soprano and he will have a listen to me next year to see if we make it a permanent switch (the choir is light on with sporanos)

Joy, joy, happy, happy, joy, joy =D

Forgiven

2009-09-30T16:16:00.005+10:00

Forgiving and being forgiven. These are keystones to any friendship, and belong in a relationship context as well. At some point in a relationship friendship should also be paramount. Now that's over....let's use the word forgive in the context of true friendship, where people love each other.

Loving people, for me, very much comes without conditions. I love unconditionally. I'm told that I am not Christian in my love, but truly humanistic. I remember at university when I was doing one of my counselling subjects we had to analyse a counselling session using a "solution oriented" theory. I got one mark under a pass mark. I went to see my lecturer because I needed to know what I had done wrong so that I would not make the same mistake again. He said something like, "Well Lis, had the subject been Humanistic theory you would have got a high distinction". We discussed humanistic and solution oriented theories and the differences between them and ultimately, even though I did not ask, he remarked my assignment to pass. He said he could see I knew what solution oriented theory was, but that I was so much a natural humanist I couldn't over ride it! I learned so much from that man. A true teacher.

To forgive is hard. I'm probably more stubborn than most (let's blame those van Z genes). Contrary to popular belief I have the capacity to forgive. After a 3 year issue with my best friend of 40 years (and i am 42!) we resolved it so simply. Yes we are angry, yes we feel let down, but yes we figure out why and yes we can move forward. Why, because you can not undo 40 years of friendship easily. There is nothing in my life that this woman does not know about. We have fought, we have laughed, we have cried, we have been close, we have been distant, but most of all we have always been a part of each other's lives since that day we made friends over the fence. Forgiving is two way, forgiving and being forgiven. There are other relationships in my life that I wish this were possible. In some ways I need to know why before I can forgive. Is it my black and white Autisticness? My stubborn Bipolar Disorder which I'm told also carries with it a black and white / all or nothing streak.

When forgiveness is obtained the next step is carrying on / moving forward. Step by step, sometimes slowly, sometimes with trepidation and heart in mouth. Life MUST move forwards, otherwise you do not grow as a person. Self actualisation? The jury is still out for me on that one, but I do believe that as a true humanist I will continue to grow.

Thanks for reading. Please leave comments. The comments give me strength.
Lissy

Hypomania

2009-09-22T00:03:00.004+10:00

It's official! I'm having my first hypo manic episode since I was diagnosed in January.

Cause? Multifactorial (god that's a sexy word isn't it?) Last week Brother R came to visit with 2 of his kids. Psychiatrist tweaking meds, lowering Lithium by 500mg a day. Seeing my ex-step son for the first time in over 4 weeks. Daughter abusing me via text messages. Food poisoning from dodgy Indian curry,

It doesn't matter what the cause is, what is important it managing the hypo mania.

As you know, I've slowly been feeling better and better with the Lamictal/lamotrigine on board. Pdoc decided it was time to lower the lithium with a view to eliminating it from the mix. I was also to raise the Lamictal to 100mg today.

Wednesday onwards last week I noticed difficulty sleeping, but I was still wanting a day nap.

Today, despite getting 3 hours sleep I was not tired. Signs. I also drove around a roundabout a few times last night as a joke to cheer a little fella up. Signs.

At 3.30pm at work I suddenly got chest pain and anxiety. It lasted about 10 minutes. I took a break and had a drink of water. When the pain stopped I was BUZZING. IT WAS LIKE A SWITCH HAD BEEN TURNED ON. Thank god for insight. Got my Pdoc to call me. Lithium back up, lamictal up and extra visit Wednesday.

Now my twitter friends advise me to enjoy because there will inevitably be a crash.

WONDERFUL. Being a newbie, I didn't realise this.

The buzz is nice. I got lots of work done. At the peak I got a bit distracted and unable to concentrate. It feels good. Much better than wanting to kill myself.

For 20 years I've been praised for my unusual insight. Little late this time, but still in time enough to be helpful. Insight is so painful. I often wonder what it would be like to be clueless to my own behaviour and moods instead of keenly aware and at times mortified.

So all in all an interesting day. I've been slowly PRNing myself with Valium/Diazepam. Buzz is still there. I'll stay with my twitter friends till I'm OK. Thank you guys for being such good friends and support.

Lissy

I'm still here...I think

2009-09-17T16:16:00.004+10:00

I've even had a reminder that I have not blogged for a while so here I am.

Time moves forward and I am not the same person I was 4 or 5 weeks ago. That's got to be a good thing right?

What can I say...Lamictal/Lamotrigine has been a miracle drug for my depression. I've said this before, but if someone had told me that I would take a pill and two days after feel ok??? I'd have cried in their faces (I wasn't capable of laughter) The picture to the side? I am going to prove it wrong this time!

What's been happening? I've been crazy busy (get that? crazy busy?....well I thought it was funny) with choir. We've been averaging 2 rehearsals and 2 performances lately and I've managed to keep up but only just. Now on a 2 week break before we start rehearsals for Handel's Messiah. I've sung the Messiah many times but mostly as a soprano, this year I must do it as an alto....sniff sniff. I know all 3 hours of it without looking at my score as a soprano, it is going to be difficult.

Relationships end, others begin, and to quote my brother Robby the cycle of life goes on (was he referring to motorcycles though?) Speaking of Robby he did the surprise pop in after a 2000k drive with two of his kids, Andrew and Learnah. No photos to share because I'm a slack bitch and forgot to take any. But the memories are in my heart. They were only with me for a matter of days but I just love those kids so much. I also love my brother very much too, I had forgotten how much we are alike, and that's probably been the source of some upset lately. Some things never change, he had to tell me I was fat. Does he think I don't look in the mirror?? Men?

I still hurt inside. I hurt for all the promises I will never fulfil, the promises I will never see, for what might have been, for how I thought my life would be, for the additional relationships that now change and go in different directions. I look forward to the future, with excitement to new people, new experiences and making a new direction for my life.

I can remember when I had Rhys his dad said we couldn't have more children because he couldn't possibly love another child as much as he loved Rhys. Well, I managed to talk him into giving me Elise and he found that his heart just grew to include this other child as well as Rhys.

My heart will grow and keep growing.

And the beat goes on

2009-09-01T21:10:00.005+10:00

Sometimes we have to NOT fight life and just LET it happen.

I know all the right things to say, maybe it's a case of do as I say,

not as I do.

I WILL SURVIVE. IT HURTS. LIFE WILL GO ON. WHAT WILL BE WILL BE.

If I were talking to someone else I would be saying, it's just a relationship, you have tried really hard, after this many breakups, it is time to stop fighting. I will stop fighting. I can't do it anymore. I WILL always love him, but I will move forward.

NEXT CHAPTER SPOILERS ANYONE?????

Alone but not lonely?

2009-08-27T22:34:00.005+10:00

Above is a picture of myself and my 5 siblings (I'm the youngest by the way) taken when we were all together in 2005 for dad's funeral. I'm the one at the front, separate from everyone else, and no one else is touching me. It's taken me a long time, but that's how it is and was and always will be. My family do not care for me. They are introspective to the extreme and I suppose in a way to cope, I've made a decision that I will not make further contact with them.

I am alone. No family. One friend. I'm angry that I am isolated like this. I am isolated like this because of my own doing. If I'd stayed in Tasmania I would have had friends and my brother to help me mentally and physically. Because of my choice I am in Brisbane and I don't have any one (My new friend does not know me very well to be truthful, I do love her her though, and we are both getting to know each other.) I am isolated and it is my own fault. No one to blame but myself.

I've just realised how pathetic it all sounds. I don't have anyone in my life because of my own stupidity. It's all my own fault. I made my bed and I should lay in it. It is all my own making. I chose to walk this path in life and this is the consequence.

Someone I love told me that having a relationship with me was not worth the "cost" to his own mental health. No wonder I only have one friend.

I have to "do" the path out on my own.
Lissy

Lamictal/Lamotrigine

2009-08-20T17:14:00.004+10:00

My last post, what a doozie. I think, and thanks for the help from my commenters, that I was disassociating. The last 2 weeks saw many visits to my GP, my psychologist and finally at the end my psychiatrist. I'll try not to think about the 3 hours at the psych ward at the PA where I convinced them I was just telling people how I really felt and that it was not a suicidal ideation.

What a difference a very small dose of Lamictal/Lamotrigine has made to my life. A lift in my depression without the mania? It is amazing what I felt after just 3x25mg doses. Day 5 I almost feel like I'm a human being again. I feel so much better. I don't feel "better" though, and I don't think I ever will. I will always be unusual, sometimes in a good way and sometimes in a bad way.

I'm off to the theatre tonight to catch up with a teenagehood friend. If she looks the same now as she did back then I'll scream!! And then I'll give her another hug =D

control issues written 11/08, posted 30/09

2009-08-11T22:48:00.007+10:00

Some bad things in life happen because of something that I do.

Some bad things in life happen because of something that is out of my control.

I wrote the above on the 11th of August 2009. I have no recollection of doing this and only just found it in my drafts. It's profound in two ways:

1. At that time I was in suicide mode. Thinking, fantasising, imagining all day long. I even decided that suicide wouldn't work, because that would make people angry with me, but if someone killed me it would all be OK.

2. Earlier today I wrote a blog about hopeful change and forgiveness. Also related to things within and without my control.

It is really spooky to have found this blog today. I honestly have no recall of writing it.

Thank you so much for reading.
Lissy

No matter what you do

2009-08-07T14:04:00.002+10:00

No matter what you do, life just seems to want to heap shit on you.
At least that is how I feel at the moment.
Is it life raining shit on me?
Or is it I think/perceive life is shitting on me but it isn't?
I'm sick. So sick I've taken time off work. So sick that reality seems to have gone off on a tangent in my perception. 2 days have given me insight enough that I'm not "seeing straight".
The whole time since diagnosis I've been asking my Psychiatrist "reality check" questions. Unfortunately she is away. But till this week I have had reality. This week I've not been experiencing reality. I think.
Is this the first step towards psychosis?

My beautiful girl

2009-07-12T23:19:00.005+10:00

I wanted the pictures the other way around, younger then older, but I am an imperfect software user.

Isn't she just beautiful? I often wonder what parents of ugly children do when faced with such beauty as I have produced! *tongue is firmly in cheek*

The top pic is only from a few weeks ago. Please ignore the rabid bright cat's eyes to the left of her, no animals were harmed in the taking of the picture. The bottom picture is from years ago, well before puberty hit. Please note the curls are real, as are the blue eyes, and no she IS NOT ADOPTED, despite jokes to the contrary.

This is my beautiful girl. Some times people are surprised when I reveal I am not only mother to Rhys, but also mother to Elise. I've often thought about this. I talk about Rhys often because of the hard work, pain, anguish, heartache I have been though to get him to where he is today. I talk about Elise less, well..........it's awful to put it like this......but she just doesn't suck energy out of me the way Rhys does. Elise has always been the "light of my life". From the minute she was born I fell in love with her, and she responded in kind to that love and I was caught, hook, line and sinker.

Elise, in the time between these photos, entered puberty, got a boyfriend (age 13 and still counting) and for a while there we experienced conflict between us for the first time. Man, it broke my heart. I was so used to relying on her steady unfailing love for me, to have to wrenched away by a 3rd party was heartbreaking.

One thing that never changed were our daily cuddles. We had to find our new "normal" relationship now that "he" is on the scene. It took time, but eventually some closeness returned.

I love her so much it hurts. I love her for listening to me. I love her for the way she prattles on and I listen to her! I love her for her achievements at school. I love her for her work ethic where she works. I love her style. I love her when she is sick and comes and sleeps in my bed. I love her when she intuitively knows I'm not going so well and sleeps in my bed. (Explanation, it's not that she sleeps with me, it's the talking that goes on before we drop off, it's like having a slumber party). I love her hugs. I love her cuddles.

I love her.

I love you Elise, my beautiful girl.

Thanks for reading,
Lissy

Dr John Cade-an amazing Australian

2009-07-12T23:03:00.002+10:00

American Experience A Brilliant Madness Timeline: "1949Australian psychiatrist J. F. J. Cade introduces the use of lithium to treat psychosis. Prior to this, drugs such as bromides and barbiturates had been used to quiet or sedate patients, but they were ineffective in treating the basic symptoms of those suffering from psychosis. Lithium will gain wide use in the mid-1960s to treat those with manic depression, now known as bipolar disorder."

God bless you John Cade.

As much as I curse Lithium and the effects on my body, I can not ignore the effect it has had on my behaviour. NO MANIA since reaching a therapeutic level.

My somnolence is troubling me. I've never been a sleeper. Quite the opposite, I've always suffered from sleeplessness. Give me lithium and effexor though and bam! Somnolence has arrived. I sleep waiting for appointments. I sleep in front of the tv. I sleep in the car. I want to sleep most of the time. I sleep 10 hours at night and after being awake for 2 hours I want to sleep again! I've upped the effexor, I've lowered the effexor, I've changed the time I take my meds, all to no avail. I want to sleep.

I'm at my wits end. I can't continue to function like this (and by function I mean go to work and earn money so I can pay the rent and look after my kids) I'm scared the somnolence may cause me to lose my job. As it is I'm only ever one pay packet away from being homeless. I don't think my psychiatrist understands my concerns. Maybe she's never been homeless like we have been.

Thanks for reading,
Lissy

My beautiful boy

2009-07-05T22:50:00.003+10:00

I hope he thinks this picture is old enough to protect his identity! Yeah right as if more than 5 people will ever see it :-)
Today he put an old VHS tape in the player. The tape must have dated from early 1993, as I was skinny at the start but as the tape went on I progressively looked more and more pregnant. He would have had his 2nd birthday while it was made.
One of my aunts and uncles from the Netherlands had taken it during one of their long visits. Lovely people and still alive today.
I recall at the time being very concerned about his development, but no professionals would listen to my concerns. Later, towards the end of the pregnancy I had very real concerns about how I was going to cope with the both of them.
The tape shows a gorgeous toddler, dressed beautifully. He is inquisitive and busy. He is vocal, but no words are said at all, not one. His play is unusual and repetitive.
Watching the tape brought back all sorts of memories. How happy I was to be pregnant, but scared of the birthing process. I saw footage of my parents, which very much brought mixed feelings. I saw my ex-husband. Surprisingly few feelings there. I felt sad I don't have an equivalent tape of my daughter to watch. She was in this one though, just inside my uterus at the time!
The big thing about watching the tape is that it is so obvious that he has Autism. Another feeling I had was that if I could have him any other way would I want him different? NO. I love him so much just how he is. He wouldn't be him if he didn't have autism.
I don't know what philosophy my next statement belongs to but I truly believe it. I wouldn't be sitting here today if he didn't have autism. Life has taken me down a path and in the end it will be revealed to me why. I am on a journey.
Thanks for reading.
Lissy

Precarious Life

2009-07-01T22:23:00.004+10:00

Life for this butterfly did not last long. Yet it moved me in my life, enough to take a picture so that I would forever remember it.

I think about death. I've been thinking about death often since I was about 14 years old. Just last month my Psychiatrist pointed out to me that it is not "normal" to think about death, particularly as often as I do.

Now this may sound funny, but I really hadn't thought about it like that. It also made me realise what I thought was "mildly depressed without significant impairment" was really "severely depressed with significant impairment". Al least I now mark my mood chart more accurately.

What I am going to say will hurt those who love me. But I am going to say it. I still want to die. I love my children so very much. I've blogged about that. I still want to die. Knowing that you are loved doesn't take the pain away. People say to me, "but your children still need you". This is not a helpful thing to say to me. It makes me feel the burden of caring for them keenly. I am tired. I am so very very bloody tired. I am fucking tired. All I want to do is sleep. Maybe I want the sleep that does not end (death). Knowing my kids need me makes me feel even more tired.

When people ask me how I am, sometimes I say "I'm alive" or "I'm here". These are not flippant comments. It means exactly that. I'm here, I'm not happy, but I survived the night.

What will I leave behind, like this butterfly. I will leave pictures, my children, my "things". I believe people will say I fought the hard fight for children in care and for people with a disability. I believe people will say that whatever I did, I did with all of my heart.

I'm scared if I continue as I have been lately people will say, she slept a lot, she was tired all the time, she was depressed. I don't want this to be my legacy.

Lissy

Choices

2009-07-01T21:27:00.002+10:00

One of the 10 standards that grew from the 2006 local disability services act is decision making and choice.
I recently went out for coffee/hot chocolate with a young woman with whom I used to work with and I have blogged about in the past. She is just over 21 weeks pregnant and we had a lovely afternoon catching up. I asked a lot of questions of her and she was so very patient with me. Probably because in the past she has placed great trust in me and knows that this trust can continue. She expressed fear of the birthing process. I assured her this fear was something I too had and that I had survived giving birth twice. :-)
I think I asked my questions in the wrong order, because it was not till quite late in the visit that she told me she had been presented with 3 choices:
1. Late abortion
2. Adoption
3. Foster care
She told me that she chose foster care because she could still have contact with the child. She said she could never have killed her baby. She also said adoption meant the baby would never know her, nor her the baby. I asked how long after the birth will you give the baby up. She didn't know. We talked about lots of things, many around her very normal fears (not knowing what the baby wanted when it cried, not getting enough sleep, not knowing how to look after the baby,bathing-feeding, dressing, changing nappies)
Where was the forth choice?
4. Keep the baby and look after it myself.
This young woman spent a lot of her early life in a really bad place. It is my belief that if she has an intellectual disability it is very mild and she is very capable of learning.
These choices are not mine to make, but I wonder if SHE was fully informed of ALL of her options and was given the opportunity to make an informed decision.
I will support her whatever she decides. We bough some little outfits to suit a newborn. Whatever the outcome, he will need something to wear. Yes, he...now if only I could remember the name she told me :-)
Lissy

Blessings

2009-06-20T23:24:00.005+10:00

This is an old picture, gosh, probably early 2005, but it shows my small family, the one I created myself. The one that, in the end, will be the one I rely on and can count on for support.

My depression is lifting, slowly, depression medication has been increased. I'm praying I don't flip into mania again. I was very much having trouble getting motivated this morning. Even though I now do the bare minimum housework I couldn't even get motivated to do that. I couldn't even figure out what was most important to do, let alone do it.

Elise was at work, Rhys was home with me. We joked about dishes being done, but in the end he did them. Bless his heart when it was time to cook dinner he put the chicken in the oven and prepared the potatoes. This is a first folks. It was so nice to eat a meal that he had prepared. It was also super duper yummy!

Some days I find parenting so hard. Today I am so very thankful to have them in my life. All week Elise has been getting in the washing , folding it and putting it away. Rhys was so very helpful today and so very understanding of my needs today.

I love them very much. They are the reason that I keep going.

Lissy

hypomania/depression

2009-06-17T21:51:00.003+10:00

Oh, just a quick post!
Remember I was wondering if I was heading towards mania a few posts ago?
Luckily/unluckily no, I am still depressed, moderate (I guess because I still think about death a few times a week) but coping ok.
And damn it...I thought the house was going to get even cleaner...sadly that didn't eventuate.
What's clean? My en suite toilet and my sheets. Selfish I know :-)
Lissy

Validation

2009-06-17T18:04:00.002+10:00

These words relate to an Internet chat I had today with a young woman who used to be one of my clients. She would be 19 or 20 now, but when I first met her she was 13.

I used to work, hands on, with children and young people who were in the care of the state/under protection orders. These children and young people sometimes also had a disability. This particular young teenager had people do things to her that were truly shocking as well as being a subject of extreme neglect, and because of these had severe "challenging" behaviour. The only way I was able to continue working with this sort of client was to always "say" in my head that the behaviour was not really directed at me, I just happened to be there. I also knew from studies during my Bachelor of Psychology that quite possibly this one had Post Traumatic Stress Disorder (PTSD) and I could never be able to predict when the behaviour would appear. There was no way to do an ABC (Antecedent-Behaviour-Consequence) analysis on past behaviours.

One day, what started as a very ordinary, routine day this young lady tried to kill me by throwing a large (catering size) tin of fruit at my head. I must have ducked because the tin of fruit lodged it's self in the door behind/beside my head and actually had to be removed many hours later (it must have been one hell of a throw!). I recall in this instance the police had been called and once she had been taken away I had to stay behind to wait for the police photographer. The house had been trashed.....no better word for it. I tiptoed over and around the mess and went and sat down in the lounge. From my seat I could see the tin, wedged in the door......and I started to tremble. It was not till that point that I realised my life had been in danger. I think I got very drunk that evening. Not a good way to cope with your stress I know, but it worked for that particular night.

The next day I worked with this young lady again. I always believed (and I had to, just to keep my job and to keep working) that tomorrow is always another day, yesterday's behaviour belonged to yesterday and today we strive for better. Life went on, I worked with this young lady for some time. As I graduated from university, stopped working as a Disability Support Worker and "graduated" to working in the office I continued to have contact with this young lady. When she graduated from High School I arranged to get her dress hemmed by a friend of mine who is a professional dressmaker (I did the pinning though) and I myself adjusted the straps on the dress. She came in on the day and may I say she looked absolutely stunning and I had to hide a tear.

Not long after this my job became redundant and the next contact I had with her was through the Internet on a networking site. What a surprise to have a chat with her. She announced she is 4 months pregnant and she has spilt from the father. I was asking her about the support she has now and she claims that she has support. I then said that was fantastic and said:

L: I love babies and you can put me down as a babysitter!

A: which i will. cuz u always had been there for me even through all of the hard bad times

L: yeah, we had some bad hard times together hey? but we both got through them AND we still love eachother!!

This young woman is amazing. I am so proud of her and what she has accomplished and believe that she will continue to grow and change and do amazing things. I am honoured that she trusts me to babysit her baby when it arrives. People come into you life for many reasons. I have learned so much from her and will continue to do so. I hope that she has learned from me too. I don't know the reason she is in my life but I do know that I am honoured and privileged to have played a part in hers.

Lissy

Funerals

2009-06-11T22:03:00.003+10:00

Funerals are or should be a celebration of a life. The life I went to celebrate today was cut short at just 31.

This young man was born with a few strikes against him and tried hard every day to live the best life that he could.

I would like to think that he is somewhere now, with his front teeth restored, beautifully dressed in an Armani suit drinking something alcoholic (somehow I see him as a red wine drinker).

He would be saying something like:
"By golly that 31 years was fairly rough. I'm so pleased to be here now, with no epilepsy, no intellectual disability and no autism"
(or maybe just a little autism, enough to make his personality very interesting).
"Everyone who looked after me tried really hard to give me the best life I could have, but I'm so glad to be here where I am today"

SL, thank you for letting me be a part of your life. I learned much from knowing you. May you rest in peace.
Lissy

Road rage x_X

2009-06-08T19:35:00.005+10:00

I thought my mood was lifting. The depression has been so profound I have managed to do the bare minimum and nothing else. This tactic is designed to preserve what little sanity I have remaining.

This week I felt the depression lift, ever so subtly. On Friday the whammy of one of my clients passing away while in our care hit me right between the eyes, physically and mentally. I deliberately kept Saturday fairly quiet and peaceful. Sunday was pleasant and quiet. Being a long weekend (the Queen's birthday weekend) I thought it might be nice to do a little retail therapy at my favourite clothes store TS14+. I hop into the trusty station wagon and head onto the motorway. At the turnoff I slowed down to 60kph and in my rear vision mirror noticed a young (no more than 20y/o) man in a BMW waving his arms around, putting up his "rude" finger and mouthing obscenities at me. He pulled up beside me at the lights and i zapped the window down to ask him "what's your problem, the speed limit is 60k per hour". He started in with "what's my problem? what's your problem you fat bitch". I repeated the speed limit issue and he replied with more about me being fat.

I've seen what speed can do to someone's brain if they survive the accident. My father, an in law family member and some of my clients. I really didn't give a flying hoot about the comments about my weight, it's never prevented me from finding a man. BUT BY GOD......... I WANTED TO SMASH HIS FACE IN REGARDING HIS ATTITUDE TO SPEED LIMITS. Speed not only kills, it leaves people behind with terrible injuries that may be lifelong issues.

I'm not a violent person...well at least I don't think I am. I honestly started to get out of the car with the intent to walk over to his, drag him out of his car by his t-shirt and hit him in the face. I'm 6 foot tall, he looked little, could barely see over the steering wheel of his car. I could see it happen. My hand went to the door handle, my brain kicked back in and I STOPPED MYSELF.

I'm so pleased my brain found its "brake" and I did not commit assault. I'm a little shocked at my strong emotional response to something I see happen every day. What made today and my response so different?

Thanks for reading,

Lissy

Are eyes the windows to the soul?

2009-06-07T23:01:00.001+10:00

Sad eyes.

In the past sometimes I've met people and they comment that my eyes are so nice and beautiful. Other times people comment on how sad they are.

Are eyes truly the windows to the soul?

Yesterday I put this picture on my Twitter profile because I was sick of looking at the one I call my shiny happy lissy picture (cropped version of my profile picture here). I wasn't happy the night this picture was taken, not for any particular reason, just "normal" depressed.

Tonight I decided to put the happy picture back up on twitter. I'm hoping that just by looking at pictures of me happy (dare I say even hypomanic) will lift my mood.

In early 1995 I weaned my breastfeeding daughter to begin chemical treatment for depression. I recall that even then I couldn't remember what "not depressed/normal" felt like anymore. In 1985 at the grand old age of 16 I attempted suicide. Even then I don't think I remembered what "not depressed/normal" was like. I do recall periods of hypomania before this. My psychiatrist and I were trying to get me to remember what "normal" me is like and it is a hard process when illness has been there for so long. How do you tease "normal" from hypomanic when your life has been either depression or hypomania for over 20 years?

My medication has not brought me "normal" yet. Since the hospitalisation I've either been hypomanic or quite depressed. I fear that there is no happy medium ("normal") and if this depression is "it" I don't want to keep going, I'd rather not be here.

On Friday on of my clients died while in the company's care. Of course I have been shocked and upset. On Friday I began to move into what I think is a mixed state (where I'm cracking jokes, crying and agitated all at the same time). Yesterday and tonight I've stayed up late to clean the house. The house is cleaner than it has been for months. I fear I may be moving back to hypomania.

Lately I've been joking that some hypomania wouldn't go astray. I've been falling asleep during the days, no motivation, lack of focus, trouble waking in morning, driving erratically, forgetting things. The truth is that hypomania is not an ideal mood state. I'm frustrated that for me, so far, there is only the swinging ends of the mood spectrum. Surely it gets better than this?

Thanks,

Lissy

Here goes!

2009-06-07T22:36:00.001+10:00

I do so enjoy reading other people's blogs. I have been asking people how do you set one up etc. and I have finally begun.
I'm going to be really honest in this blog and use it therapeutically. Strange to want to share my innermost thoughts with anyone who wants to read them, but then again I've never been shy in saying what I think, and I never hide anything from anyone either.
2 days after my 41st birthday I found myself in the local psych ward. Interesting considering I had spend a productive 6 hours at work. Suddenly my world crashed around me and thank god I had enough insight and told my GP.
This was the beginning of my known type 2 bipolar journey, even though 7 months later I realise the journey really began in my late teens, early twenties.
More of all of this later.
Lissy