Our Story

[ladywytch]

 

Yes it is ours not mine.

My beautiful daughter became physically ill about 5 years ago.

She was having seizures and was placed on epilepsy meds to no avail.

It wasn't until a complete collapse in January of 2011 that is became obvious this wasn't epilepsy.

187 seizures in a 24 hour period and no knowledge of who any of us were - not even me. Now that was heartbreaking.

She was transferred to a larger hospital, put in the neurology unit and a barrage of tests done.

On doctor, a resident that was training to be a neurologist after 15 of general practice told me he didn't think this was neurological and she was going through a psychotic break.

He also told me that no matter what happened form here, there would be no logic to it - something that has stayed with me until this day.  Two days later she recognised everyone but was very fearful of men, even her brothers and father and uncle.

After 9 weeks in Neurology she broke and drank chlorhexidine.  After that came the many melt downs and breaks from reality that lead to her first admission to a mental health facility.

She was 17 and in an adult facility because there were no adolescent beds available.

She was frightened and got worse.  After a week she was transferred to the adolescent mental health unit in the same large hospital she was in to begin with.

Her stay there was horrendous.  They medicated to keep patients quiet and malleable.  She cut 4 times in there needing stitches and then surgery for the first time.

I was beside myself.  

We had private health insurance and asked many times if she could be transferred to a private clinic because nothing was happening here and she was getting worse. The answer was no because she was on an involuntary order and the doctor was unwilling to downgrade this and we were told that private clinics didn't take ITO patient - found out later that was one of the many lies we had been told.

She eventually kicked a window in and shimmied down a drainpipe from three stories up.

With that she was thrown in seclusion but not after being thrown to the ground, handcuffed, dragged back to the ward and stripped by two male security guards.  (Hope they got their jollies from that).

My husband and I were summoned for a meeting the next morning and she was kicked out but not before the police were very publicly involved.

We offered to pay for the broken window - husband had $1000 in his wallet to do so there and then but no she was to be made an example of and the courts would deal with her.

So we took her home - believe me I did not sleep will that night or the ones that follow.

In the meantime we found the clinic and had an appointment the following week.

She was accepted and all moved very quickly from there.

Saw a psychiatrist and was admitted the next day.

Drugs were sorted and within 2 weeks she was home and stabilized.

The story doesn't end here because this only takes us to August of 2011.

Over the next few years we have had our ups and downs but mostly ups and she is progressing well.

Some days it feels like one step forward and two steps back but at least for the most part we are gaining ground on this insidious illness.

Jumping forward to November last year.  Her boyfriend decided after only a couple of months it was all too much for him and stopped contact with her.  This lead to dissociation and burning her arm with a lighter (new trick as before her choice of self-harm was a butter knife).  This also led to her psychiatrist dumping her as apparently he was 'frightened' of her and her escalating behaviour.

We found another psychiatrist after much begging at the same clinic, who was willing to take her on.

Now problem was psychiatrist number 1 who had just dumped her was unwilling to write a referral to hand her to the doctor that was willing to take her.  She had a place in the clinic that she desperately needed and it was Friday afternoon.  In panic to get this referral, I telephoned out GP and begged him to write one and fax it to the clinic so she could go in ASAP.

My doctor is one of those that you have to plan to be sick a week or two in advance to see him.  He wasn't pleased, but did the referral and all was good she was admitted and safe.

My GP rang me back that afternoon to let me know how unfair I had been to take up his time with something that her original psychiatrist could have done.  I asked him for his email and forward the one that the original psychiatrist had sent telling us that she was no longer his patient and he had neither clinical nor moral responsibility to refer her to anyone.

GP and I had one hell of a fight before that email was forwarded and I have not seen him since.  25 year as mine and my children's doctor and he had a go at a stressed and distressed mother trying to do the right thing by her child.

New doctor is working out well.  :)espite the community liaison nurse trying to get my girl to move to a hostel - for her own independence - more so the hospital group that runs the clinic and also these hostels can get more money from her and our private health insurer.

Up to today.  She is in the clinic and having her anti-depressants changed.  This is usually done with ECT but she can't have ECT for at least another 4 weeks due to reconstructive jaw surgery that took place 6 weeks ago and she is still healing.

She is having a very hard time.  It doesn't help that 2 weeks ago a woman that took her under her wing on her first admission to the clinic suicided and she is taking it badly and a fellow patient swallowed a butter knife last night, yet another young friend.  

I feel hospitalisation, even though there are times it is necessary sometimes makes things worse, even within a top clinic like she is in.

So to end this, apologising for the length, it was cathartic getting this all out.

I feel we can get through this and she can go on to lead a normal life, whatever that is.

My biggest problem these days is not self-harm or suicidal ideation, if you can believe that.

It is her weight.  Before she got sick at 17, she weighed 110kg, she is now 180kg.  A combination of medication and depression (comfort eating).

I have to be extremely careful when talking to her because her mood changes dramatically and then we are in crisis.

Thank you for taking time to read this.  We have been through hell and are slowly climbing back out.  I was naïve and ignorant when all this started to the medical profession and their overall feeling about mental health conditions - even the psychiatrists.  I am no longer ignorant and my eyes have definitely been open albeit pried opened.

I love my daughter with every ounce of my being and my husband and I would walk over hot coals for her however most of her recovery can only come from her so we stand each side and take her hand guiding her through those hot coals as she takes them on herself.  In the meantime, I have 3 other children and 4 grandchildren that need a little attention here and there too.

It's a shame I can't be cloned.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Kwamina]

Hi ladywytch

Thanks for sharing your story. I am really sorry that you're daughter is having these problems, you and your family have been through a lot.

I love my daughter with every ounce of my being and my husband and I would walk over hot coals for her however most of her recovery can only come from her so we stand each side and take her hand guiding her through those hot coals as she takes them on herself.  In the meantime, I have 3 other children and 4 grandchildren that need a little attention here and there too.

It's a shame I can't be cloned.

This last part of your post I found very pleasing to read! It's great to hear you say you love your daughter and are willing to do so much for her. I am also pleased by the second part of your statement which makes clear that you also realize that her recovery is her responsibility. You can guide her, but ultimately your daughter is the one who has got to do the hard work of learning to better deal with her issues. How are your other children (and grandchildren) dealing with this situation?

Your daughter has seen several specialists/psychiatrists? You mention depression in your post, has your daughter also been formally diagnosed with borderline personality disorder?

PS. A shame indeed that you can't be cloned... .but then again, there have been some scientific breakthroughs recently so who knows

[ladywytch]

Yes she has had an official diagnosis of Borderline Personality Disorder, Major Depression and Anxiety and PTSD.

All backed up by each of the psychiatrists she has seen as classic BPD.

One of my kids no longer speaks to the family as he was the trigger to her original psychotic break - yet another long story - and refuses to accept his part so has wandered into oblivion with his the thing he refers to as his other half - yes she is embroiled in this too. 

The other two kids are great.

My son is the one with the children and although he is busy with 4 kids, he always finds time for his sister and so does his wife.

The kids are only 8,5,4 and newborn and really only know that Aunty is sick and sometimes needs to go to hospital - that's all they really need to know.

It is sweet though my 4 year old grandson sometimes sits on the couch beside my daughter watching tv and it seems unconsciously strokes or kisses her scars. 

Her sister, well she's another matter.  She is there for her and me but she isn't at the same time.

Although she understands the situation logically, she is still in 'all about me' mode. 

She recently moved out of home and is doing the whole I'm an independent party animal thing.

Dad (hubby) is the type of person that handles crisis by throwing money at it.  Hence the best clinic with the best doctors etc.

He loves her and will do anything for her - which is becoming a little bit of a drama too because she knows it and is getting to be a bit of a spoilt brat when it comes to getting what she wants.

Monitoring that one closely.

One step at a time, one day at a time, one crisis at a time but we get through.

Even my estranged son I know loves his sister and would do just about anything for her.

Anything but give up his own rather toxic relationship with the woman that caused this.

[ladywytch]

BTW She is home today as she went to her psychiatrist and told him their were too many triggers in the clinic and she felt she couldn't honour their agreement of no self harm if she stayed.

You have no idea how proud I am of her that she is beginning to recognise stressors and act on them in a positive way.