More answers to some Questions: Bipolar Disorder 101

Starting and then finishing anything these days takes a huge effort. My mind wanders and goes off on little journeys all its own, flitting from topic to topic as others either talk to me or I simply sit quietly on my own. Following any ‘train of thought’ to a conclusion is challenging and the harder I try to concentrate, the more I appear to meander. So lets see if I can manage to answer the next five questions without heading off on a tangent all my own!!!!

 Question 21; Are you content with it being called bipolar affective disorder, or rather revert to manic depression or rename it completely? Why?
‘Manic depression’ has, in Ireland anyway, a very negative history. Those who struggled with bipolar disorder (formerly known as manic depression)(think prince!!) in this country were historically horribly mistreated, placed in asylums with very little medication and lots of cruelty.   While things have changed drastically in terms of services and treatments, the name still holds negative associations to this day. At the end of the day, it is what I suffer from – I have a manic depressive disorder. The fact that there is still so little really understood about the illness, still so much stigma attached to the condition for those of us who suffer from it and so much discrimination and prejudice shown to those of us with mental illness (and also accepted by us) is a disgraceful indictment of a modern society. The label won’t matter as long as those prejudices remain. The label doesn’t matter as long as medications to counteract the symptoms remain expensive and access to mental health services continue to be inadequate or elitist. I am lucky I can afford both the medications and the specialist psychiatry care. On average a months worth of meds and a doctors visit costs about $300 dollars or 3,500 South African Rand, with the medications costing more than half of that figure. Every month. I could attend a public clinic, but would get less care, less often. All things being equal, I don’t care what it’s called. I just wish lots of things were different – the name is not really one of them.

Questions 22. What meds gave you the worst side effects, how did/do you treat it/them, and do you still get any side effects now?
When I was first diagnosed, I was prescribed a drug called Fluanxol. It is a thioxanthene medicine, diagnosed for both schizophrenia and those of us suffering from depression. I was on this for about five years and I developed a shaking and weakness of the hands which was fairly difficult to deal with. I also had restless legs and would unconsciously move my legs all the time. I didn’t quite rock back and forth, but I wasn’t far off it. My doctor at the time, weaned me off fluanxol after about five years as he said that there had been cases of patients being left with face tics after prolonged use. I was put on tegretol which is a carbamazepine medication. The side effect of this was to give me what I called a ‘cotton wool’ tongue. It made my brain fuzzy, it made me feel like I had a swollen tongue and I was ‘tripping over it’. Sounds strange – how can you trip over your own tongue, but that is the closest description I can think of. It wasn’t until I was put on tegretol retard that this symptom mostly went away. Presently I take 1500mgs of this daily (just before bed actually). I was also put on Lexapro (an SSRI) about ten years ago and 18 months ago, that was changed to 60mgs of mirtazapine.

One of the greatest side effects of these medications for me is weight gain. I have over the last ten years put on a significant amount of weight, which I find extremely difficult to shift. I comfort eat as part of the depression itself, so of course this doesn’t help. Because my brain won’t ‘shut off’ I also take 15mgs of Zolpidem every night. But I don’t sleep well, even taking two tablets every night, my sleep is fairly disturbed – certainly not what I would call ‘restive’.  I deal with the symptoms/side effects as best I can.  That’s all I can do; it’s not ideal, but it is what it is.

Question 23: Why do I blog about bipolar?
I blog to quiet and clear my thoughts, to make sense of what I am thinking, how I am feeling and try and sort things out for myself. I write to have a record of my ups and downs so that I can track how I am actually doing. Sometimes it is difficult to gauge that for myself. I also blog to share with others who struggle and suffer as I do. There is strength in numbers and great support on the blogosphere. I like to feel that, to feel that I am part of a bigger group, to feel I am understood completely without having to explain myself.

Question 24. How much of your life has been stable/euthymic, depressed and hypo/manic?
Well that’s a tough question… to which I actually don’t know the answer.   I am a rapid cycler. I have distinctive high and low episodes regularly.   But I’ve also had a stressful life.  I had three children under the age of four, a fairly stressful business to run, a home to run, and a husband who is a workaholic and an alpha male. I put a lot of pressure on myself to be all things to all people because I am also a bit of a perfectionist. I worry about things more than I should and find it extremely difficult to delegate. Of the last 20 years, I can say that probably half of it has been somewhat balanced, while the rest has been cycling either up or down. That is as exact as I can be.

Question 25. What state are you in right now, when did it start and what are your goals and hopes about it?
I was diagnosed as clinically depressed in March of 2014. My doc said that it was not related to my bipolar disorder.   I had spent about five months before that wanting to put my car under a truck so that I could just “stop” everything. When I almost did it one morning on the way to work, I knew I was in trouble. Since March of last year, I’ve been battling to get out of that ‘valley of shadows’. The medications have been tweeked and upped until I felt at least I wasn’t getting any worse. I feel like I’m coming back to myself now. But anxiety has become a factor for me. Doc says it is like I am having a bit of a crisis, that life is just a bit difficult for me at the moment. When I feel too much stress, I get panic attacks, anxiety attacks and I shut down. But I’ve come a good way already . When I look back on how I was this time last year, I know there is a huge improvement. I just have to make sure that I keep that up, that I get control of the anxiety and I can have somewhat of a normal (or at least what passes for normal) existence. That’s all I can aim for – more good than bad days. I’d settle for that.

Crapshoot, Fate and Genetics!

A few months back, I wrote a piece about having children and the genetics of bipolar. I had my children before I fully realized what my ‘illness’ was and how it would affect me, and those around me. I was almost 27 when I was diagnosed, my firstborn son was nine months old. It started as postpartum depression that just never went away. I have to say I am lucky (if you can put bipolar and luck in the same sentence and not hysterically laugh), but I am lucky that I was diagnosed quickly. I didn’t have to wait years for a definitive answer; I didn’t have to flounder my way from doctor to doctor or specialist to specialist either. I didn’t go through the torment of broken relationships, self imposed and/or inflicted isolation from friends and family, hospital admissions and misdiagnoses galore. I went to my family GP, who sent me to a specialist who diagnosed a ‘rapidly cycling bipolar disorder’ as soon as our first session was over. The fact that he was head of the main Psychiatric Hospital in Dublin at the time probably helped – that and the fact I had a healthy medical insurance plan! It was however, to be a further five years before I actually had a psychiatrist I trusted. (Just because someone is recommended doesn’t mean you have to stay with them. I finally learned this and sought a referral to another psychiatrist from my family GP and have been with the same Psych ever since.)

There is a long and somewhat ‘dark’ history of mental illness on the maternal side of my family. It’s all a bit deep and mysterious! For sure schizophrenia is in there, for sure so is depression. As I am sure happened the world over, bygone members of my family were locked away in what was then termed ‘lunatic’ asylums, (a more offensive name than lunatic would have been difficult to come up with) to while away their sorry existence doped up to their eyeballs. This at the time was cutting edge treatment. So mental instability is inherent in my genes. I didn’t quite comprehend all this before my own diagnosis. The subject never really ‘came up’ and my uncles’ illnesses were spoken of in hushed tones. I certainly didn’t understand the gravity of my own diagnosis – not for years really.

So I had three children. Three wonderful, relatively well adjusted children. And all was well in our household.

But last year, wasn’t the best of years, not for me and not for my eldest, who turns 21 this year. At the tail end of last year, my son came to me and told me he was in trouble. What comes to mind when a son says that to his mother is all sorts of random things; pregnancy, drugs, problems with girlfriends (or boyfriends) or pals, anything but mental illness. He went on to explain that for the past few months he had considered jumping off a bridge he has to cross every day. (He both crosses the bridge every day, and every day he thought of jumping off.) The fact that he came to me and admitted he needed help was a minor miracle all its own. He tends to internalize things, like most young men do, but over the years I have talked to them all about my ‘condition’ and made them promise if they felt they needed help they would ask. And he did.

It’s very hard to explain how I felt when he opened up to me. There was a part of me that was extremely grateful that he had come to me and not done something stupid, that goes without saying. There was another, a much bigger part of me that was filled with pure white terror. Of course Mammy mode went into overdrive, so I arranged an appointment with the family doctor, sent him there (because he’s an adult and no matter how much I would have wanted to bring him I couldn’t) made him tell me word for word what the doctor said and then phoned the doctor afterwards (yep – that mammy thing again) because a referral to a specialist was necessary. I think this is as much to do with my family history as anything else. So I arranged for my son to attend the clinic of my psychiatrist. I trust her therefore he gets the best. Luckily, luckily, my son is only depressed. (That almost makes me laugh to write that!!) What I mean by that is he is not bipolar!

Terror = fear, horror, dread, fright, shock, panic

I don’t know how I would have felt if he was diagnosed as bipolar? Its genetic, therefore it would have been my fault. I would have been responsible for this person, who I love more than life itself, having to take a much more difficult path through life. I suppose my own experience could have helped him, but I know that ultimately, you are alone with your head and in your own head a lot of the time. While others can support you, they can’t really help you.

Fate = providence, destiny.

Don’t tempt fate = believing that events are predetermined and can be changed/altered negatively by the mere mention of them.

It hasn’t altered my opinion of whether to have children or not. It’s all a crap-shoot in the end, the odds are just slightly more weighted. But I don’t think I would have been as blasé about that decision as I think I was, if it even factored at all.