Where is the Line?

I have been thinking a lot lately. Too much for my poor little brain (as we have had birthdays, excursions, playdates, parties and a ballet concert to deal with as well). When do doctors have the right to take away a patients right to choose their treatment. Big question. Lots of answers. Everyone has basically said that when they become a danger to themselves or others. Of course everyones opinion on what a “danger” is is also different.

I have been on and off various antidepressants since I was in my teens. All bar one has had the same side effects. Numbness. So numb I couldn’t feel anything for my children. So numb therapy was useless. No I wasn’t depressed, but I also wasn’t happy. I was just existing. Floating along in the nothingness. The only one that didn’t have that side effect cause incredibly horrible migraines 5-6 days a week. It also seems that the extreme happiness I felt on those were actually the antidepressants (which aren’t suppose to be given to someone with bipolar without a mood stabiliser) was actually triggering a manic episode. I don’t like them. I don’t believe (for me) they are effective at all. They suppress any feelings I have and don’t allow me to process anything and move forward. They cover up the symptoms of depression (but also happiness) but don’t fix anything.

Now once again I am going to say that this is my opinion and I only apply it to myself. Everyone SHOULD have the right to choose their own treatment of what works for them.

I didn’t always feel that way. I felt that everyone should follow doctors advice to the letter and that if they didn’t they were idiots. Then I found myself pregnant with twins. I had previously had two uncomplicated single births. No stitches, no drugs, vaginal birth in a hospital and no complications for the babies either. Where I lived we had three OBGYN’s in the whole town. Two would not under any circumstances allow vaginal births for multiples. So I found myself with the other one. At every single step of the way I was told to ignore anything I felt. I was told I was wrong to see my body as a powerful object that could (and had) deliver babies. The doctor (and the residents and the anaesthetist) all tried to bully me into doing it their way. Their way was an epidural and a c-section. They told me I was risking my babies lives. They told me if anything went wrong I would either be in extreme pain as they performed a procedure on me without pain relief or I would be knocked out for surgery. I was told my babies would be tiny. That I wouldn’t be able to bond with them. Every time I managed to  stay strong as I had done my research and the girls father (and the amazing midwives) stuck up for me. They stayed strong when I couldn’t.

Imagine yourself at your most vulnerable. Imagine being so scared, so lost, so alone, so in pain. Then Imagine someone big and strong comes up and says “I can fix this”. The solution they offer doesn’t sit well with you. It makes you feel even more scared. But you know you can’t possibly think clearly at the moment. The other person knows this and spends more time convincing you that you can’t think clearly than actually listening to you. Then they tell you that they are going to fix it all for you and to stop thinking. They keep the pressure on until you cave. Which isn’t long because you are already so confused and scared.

I know that my bipolar and my depression causes disordered thinking. I know that it warps my perception of reality. I have never harmed anyone else in my life (beyond an incident with chicken pox…it was awful and I don’t remember it at all) except myself. Clearly after the episode two weeks ago I can be a danger to myself. Does that mean I have no right to choose my treatment? Some people think so. I don’t. I used to judge people so harshly that ignored doctors advice and acted on their own thoughts and feelings rather than what I felt was “sound medical advice”. It wasn’t until I found myself pregnant with twins that my thinking started to change. And even then…until the past six months I didn’t think it applied to the “mentally ill”…including me.

Unfortunately these thoughts are scattered and not cohesive at the moment. I hate being inarticulate. I hate being unable to clearly reason and defend my point. I feel it leaves me even more vulnerable to the comments that I don’t know what I am saying or doing.

When I was in the hospital I was given the “option” of the psych ward or the CAT team. Fearing the psych ward would see me back on antidepressants and mood stabilisers as well as the seroquel (and therefore back two years) I agreed to visits by the CAT team. I hadn’t used them before and everyone was raving about how great they were. I would be at home in my safe space and I would have my own voice. In the psych wards I have seen what happens to patients they deem “non compliant”. Locked up in isolation until they agree to take their meds. Unable to see friends and family. It is pretty awful. So as you can imagine … I did whatever they asked of me. I have been in four different hospital psych wards in the public system (one in Canberra, one in NSW and two in Victoria) and it has been the same in each one. Other people may have experienced things differently, but that is how it was where I was.

I slept for two days after…exhausted and sleeping off the effects of what I had taken. Then came the first CAT visit by two social workers. I was exhausted and scared but I stood up for myself and said once again that I didn’t want to be prescribed antidepressants. I was willing to go to therapy, I was willing to get help with sleeping medication but no antidepressants. They lectured me about being an adult and taking responsibility for my life. They reminded me I had kids (you know, in case I forgot) and I needed to do what was best for them. They didn’t let me finish a single sentence. But I stayed strong. They wrote copious notes as I was talking so I assumed they would be handed on to the next team but I was still dreading the next visit.

Visit two went great. I was visited by two men this time and they were awesome. Some people belong working with vulnerable people and some don’t. These guys got it, were supportive, understanding actually listened to me and were results orientated. At that point I hadn’t slept since my last visit and after two full years of every doctor, social worker and psychiatrist telling me my seroquel “should” make me sleep (even though after two years I think I have given it a good shot) they finally heard me. They said if it wasn’t working now after two years of trying, another three days wasn’t going to tip the scales. To be heard and understood is so incredibly powerful. I was so incredibly grateful that they understood that I already felt different. Then they got a hold of the CAT doctor, had them prescribe me two days worth of a non addictive sleeping pill and then went to get it and bring it back for me to sleep that night. It makes me sleepy, but it doesn’t keep me asleep. It is a wonder drug and after 9 days of consecutive sleep I am still singing it’s praises. I don’t wake up groggy at all. If I wake up through the night…well then it doesn’t help as all it does it get me to sleep in the first place which is the problem I have been having for years as I can’t switch my brain off.

Third visit once again (every time I have been seen by a different team) antidepressants were discussed again. I was told that if one didn’t work I just needed to keep trying the latest ones out. Once again I wasn’t allowed to talk for more than ten seconds at a time. I stayed strong, but at this point I was wavering. Sleeping was allowing me to actually think through the day. I was trying to figure out what the fuck had happened to get me to this point and I was back to being confused and scared.

Fourth visit they bough the doctor. Yet another team that was shocked I was refusing antidepressants. But this time I wasn’t even given a choice. After five minutes (of not being able to get a word in edge wise) I was handed a script for antidepressants and they left. There was no discussion about the side effects. They weren’t interested in my history with antidepressants. It was irrelevant to them. This one was new, we could try it and if it didn’t work there were others. Completely overwhelmed I started taking them.

The fifth visit was all about the antidepressants and how great it was I was taking them and being a good girl. But now they reminded me I couldn’t be on antidepressants without going back on a mood stabiliser. So they wanted to put me back on sodium valproate. Which did nothing previously (as in I stopped taking a therapeutic dose cold turkey after a year of taking it and nothing changed. No increase or decrease in anything). I explained again that I wasn’t interested in the valproate but they didn’t seem to be listening as once again I wasn’t allowed to finish a sentence.

The sixth visit they informed me I would be seen one last time before they “disengage” as I was doing what they wanted. I was taking my antidepressants and had made an appointment to see a new psychologist. There was no discussion about the valproate until they were about to leave and handed me a pathology slip as I needed to have a blood test to determine my pre valproate levels. I was totally exhausted after Miss 12’s ballet concert that I didn’t really understand until after they left what they meant.

A this point I just about lost my shit. Six visits of bullying and intimidation. Six visits of 12-14 adults coming into my home when I am most vulnerable and telling me they knew what was best for me, while not listening to a single word I had to say. Six visits of not a single team having read my previous notes. Six visits of having to defend homeschooling over and over again.

That night I didn’t sleep well. All of this was churning around in my head. I felt angry at the girls father as I felt once again he let them bully me into submission (in the past it was him who pressured me until I caved and went on medication…he has since learnt his lesson there). I felt as though, even though I know myself, everyone in the world knew what was better for me than I did. I was confused, scared and angry. But it was Miss (now) 11’s birthday and we had a big day planned. That afternoon two home ed families came over for cake. I know both mums quite well and they have been such an amazing support to me and the girls and ryan over the past few years. One of them took the girls while we went to emergency the other week. The other dropped round food. They both know the struggles I have had and we talk quite openly about it all. I explained the CAT team telling them about how great they were as an alternative to psych wards and was really trying to be positive and they both pulled me up. They both said it sounded awful. They both said it sounded like I had been bullied. They both asked me if I wanted to be on this medication. If I was ok. They listened. They let me finish a sentence. They looked at the pros and cons with me. They didn’t remind me I had kids to worry about. They wanted to make sure I was supported.

In that moment I realised everything they were saying is what I had been feeling. But as I know that I can distort reality I kept trying to convince myself that I was imagining things. That I was crazy and I shouldn’t have any right to make my own choices as clearly I don’t make the best choices. But here were people who knew me. Who have watched me struggled from diagnosis to overmedicated to fighting to have my voice heard and to get to a point where I was being treated as a person and not “bipolar”. They were more worried about what happened the other week than the CAT team.

Since then I have refused to see the CAT team. I have discontinued my antidepressants. I have been in contact with my new psychologist who allows me to talk to her via email (as I have pretty severe phone anxiety). I am looking after myself – exercising, eating properly, sleeping, spending time with my girls, with friends who love and support me. I am running or doing my yogalates when I get stressed. Every night when I take my meds (I am still on my seroquel and sleeping meds) I turn off my computer, run a hot bath and listen to jazz for at least 45 minutes and then go straight from the bath to my bed where I listen to a meditation app and then I go to sleep. I have gone and stocked up on the vitamins I need. I am eating my two serves of fruit and five serves of vegetables every single day without fail. I am staying away from sugar and carbs (which give me mood swings). I am trying to steer clear of preservatives and asparteme (the studies into bipolar and asparteme are pretty shocking). I am spending time focusing on myself. Sitting and drinking a pot of tea quietly with my Glasshouse Marsielle candle burning next to me. Not getting straight on the computer first thing in the morning or last thing at night. I am doing. I am moving forward.

For those that want to offer their support I would love to hear from you. For those that are concerned this is the wrong path or that I should be doing what the doctor thinks is best (the doctor who saw me once and didn’t read my file) I am going to ask you to keep those opinions to yourself. I know that this is a public blog and I now have people who have been reading for awhile, and that I also have new readers and I know you all just want what is best for me. All I ask is that you let ME decide what is best for ME.

Boy does that feel better to get all that out of my head and onto the page.

project:girl

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3 thoughts on “Where is the Line?

  1. The way I see it is that a person’s health and recovery is a process that requires a huge investment by the person. If the person is feeling unempowered and disengaged, that investment is not going to happen.

    The CAT team probably have limited resources and so have to “do their job” which involves ticking boxes about getting you on medication etc. The problem is that most mental health patients have a long and involved history, and so this approach is not going to work in the same way that it would with someone who falls over and needs at home rehabilitation.

    Mental health services (and medical services in general) in Australia are in a very sad state, which angers me. Even with the private system, if you find a doctor who you trust and who is competant to deal with a very complicated case, it’s unlikely they’ll have the time to invest in you. It’s very rare to find a GP for example who is willing to sacrifice 1/2 of his potential wages to accept bulk billing AND spend quality time with each patient (and who can blame them, really).

    I knew one GP like this, who devoted his life to his patients. He was pursued by the medical board for a trivial matter (for which I believe he was made a scapegoat, and which was a waste of public resources to prosecute for), and it absolutely broke him (even though the end result was a slap on the wrist, for someone who did the utmost for his patients and was clearly not negligent as they were alleging, it was devestating). The end result is that he is no longer in general practice. These sort of situations absolutely disgust me.

    Anger aside, nothing is going to change dramatically in the short term.
    We all have to find a way forward in the current circumstances.
    Can you find a psychiatrist who you trust and who listens, to try the newer treatments with? Someone who will support you through it, and let you make your own decisions?

    While I think you’re doing the right think in taking control, the way forward will be fraught if you cannot find a doctor who you can engage with constructively.

    • You always seem to give the most amazingly thought out responses…thanks Lisa. I seem to have found a good psychologist…psychiatrists are tougher to find. Unfortunately I can all too easily believe the story about your doctor friend. The system really does let down those sorts of doctors. As for the mental health system in Australia, or anywhere unfortunately, it is all pretty pathetic. I don’t blame the CAT team individuals…they really are up against it…seeing 20-30 people in a day and driving to each of their houses, I honestly don’t know how they do it. Unfortunately it is a lot like teaching…the good teachers who try to do the best get beaten down in a system that can’t support them being good teachers.

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