Pink & Blue Mummyland

Pink and blue parenting through pink and blue moods….

Roller Coaster

I’ve not been here for a couple of weeks. This is mainly because I have been doing this:

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and this:

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and this:

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and this:

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It has to be said, I’ve never really been a fan of roller coasters. I like keeping my lunch in my stomach too much. But I am married to a thrill seeking husband and we seem to have spawned two children who take after him in that department. And the ‘family holiday where we do things together’ (which I, now to some chagrin, wish I hadn’t constantly insisted upon) apparently extends to fairground rides.

But, to be fair, I spend most of my time on a roller coaster, albeit in a slightly less joint straining, child restraining way.

Lots of people liken having bipolar disorder to being on a constant roller coaster. It’s a very good analogy – getting higher and higher, and more and more excited as you reach the top, only to lose the exhilaration all too quickly as you plummet towards the concrete of a seaside palisade. Fortunately, with a roller coaster, there is at least a little warning of what is to come. My experience of bipolar is that of blind corners, often unrecognised rises, and largely unexpected and unstoppable falls. 

The most analogous thing about this roller coaster for me was that when on on the pleasantly undulating slopes rather than extreme and invigorating climbs and drops, the car spun around. There was never a point at which you could just relax and enjoy the views, because you never knew which way you would be facing when the exaggerated excitement began again.

That’s my life. I have to be constantly aware, never losing concentration, trying to track every little twist and turn for fear of what might come next. I would like to be one of those sufferers who can see what’s going on with my moods, and predict their arrival based on minuscule changes of demeanour or the rolling of seasons of the year. Perhaps that comes with experience, with years of watching and waiting and willingness to record every mood change that comes to call. Perhaps if I was further on with that process they call ‘acceptance’ I would be doing likewise, rather than just being tossed to and fro, riding the tides as they come. That’s what you’re supposed to do, as a sufferer. It’s what all the blog posts and medical journals and self help group aficionados advise – the better you know yourself, the better your health can be.

Is it wrong not to want to have to do this? I feel like a stubborn little girl, stamping my feet at the idea that the rest of my life might have to be consumed by note taking, mood tracking and medication management.

I’m fairly well aware right now that the closer I move towards acceptance, the more I realise I’m not there yet. Each time I deal well with whatever mood change comes to call, I become more aware of coping mechanisms that need instigating and thought processes that need changing. Eighteen months down the road from diagnosis, I’m only just beginning to own the fact that I suffer from an essentially permanent mental illness (which for some sufferers becomes terminal) that will need long term (if not life long) medicating, and constant acknowledgment, awareness and observation. It’s only recently that I’ve actually been able to say with certainly that I have bipolar disorder rather than, “I kind of have bipolar,” or, “I had a sort of breakdown.” Many years of experience have helped me to use terms like, “I suffer from depression,” but I still don’t find myself able to say, “I was hypomanic,” or use the word ‘episode’ with regards to depression or mania – it is just too close to admitting I have this illness that comes in waves, like chapters of a book, with a cliffhanger at the end of each one. It’s hard to know how to end a post like this. Do I try and think of some witty comment, dramatic climax, piece of wisdom for others following the same path? Do I falter, writing on and on with ever more obscure simile? A roller coaster finishes it’s adrenaline fuelled circuit and comes to a stop, and a family stumbles out, all ready for the next party to clamber in.

Stop the ride, I want to get off.

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Healthcare

So, I saw my doctor this morning, who has added in more medication to help with the depression and anxiety I’m experiencing. I knew I was feeling bad, but I have a tendency to play down my symptoms, feeling like I should stay strong and stoic and somehow manage my moods by willpower alone. Fortunately my doctor is ace, and knows me well enough to see how unwell I am just now.

Doctors are so important in the management of bipolar. The more I read and follow people with bipolar, the more I realise just how different medical care can be with regards to where you live. I’ve been asked by some of my American friends and followers how healthcare works in the UK, as it seems so different to the States. So here’s a short explanation of how services in the UK work, and some of my opinions – other Brits please feel free to comment and put me right on any mistakes.

We are fortunate enough here to have the National Health Service. The NHS was formed in the nineteen fifties, and means that all medical care is free at the point of use. You don’t have to pay to see a doctor or any other medical professional at an appointment – we all pay taxes dependent on how much money we earn, which pays for everybody to have the same access to healthcare. There are some people who complain that if they don’t use the NHS they shouldn’t have to pay for it (there are options for private health insurance for those who can afford it, where you can see a doctor much more quickly and for much longer appointments), but for the most part the system works, and it’s a relief to know that in an emergency there is everything one could need without anxiety over the bills it will incur.

Whatever treatment you seek, you will start with a GP – a general practitioner – who works in a local surgery. They will see you for short (normally ten minute) appointments, during which they will decide if and how to medicate a problem, and whether to refer to an expert consultant – for example, an oncologist, gynaecologist, or, in my case, psychiatrist. The specialist will then treat you until you are well enough to be referred back to the much more regularly accessible (and much cheaper) GP. I am now under the care of my wonderful GP, who is able to alter my meds if needed, refer me back to the psychiatrist if she thinks it’s necessary, and books me double appointments without me even asking.

If your GP refers you to a consultant (specialist), all you have to do is wait for the appointment time to come in the post. The main problem at this point is the wait, which in mental health is often due to the shortfall of psychiatrists (or the shortfall of money to pay more of them). When in crisis last year, just post hypomania and in a horrifically mixed state, I had to wait six weeks to see a consultant psychiatrist – and that was on the fast track. When I finally saw him, he referred me to a clinical psychologist, which turned out to be a nine month wait (although he did continue to see me every other month while I was waiting). All this meant that my non-specialist GP was the one responsible for the management of what can be a very complicated condition to treat. (I should also mention at this point that when I use the term specialist, I don’t mean a bipolar specialist – general psychiatrists cover all mental health problems).

The downside of having a nationally funded health system is that there is often a lot less money than would be ideal for the healthcare of everyone who uses the NHS – much of this caused by the economic crisis that has forced austerity measures. Every department is being forced to find ways to cut back, and none more than the mental health system. As I write, 23% of the NHS workload falls under the umbrella of mental health, and yet in some areas less than 7% of the health budget is allocated. It is also worth noting that for ‘physical’ illness there are imposed waiting time limits; in mental health there are no limits, so a patient can wait months just to see a consultant psychiatrist, and then again for any referrals they might need.

One of the major problems I see with the NHS is that, because of the budget cuts, it is forced to be short sighted, and mental health is the area where this is most apparent. There is no extra money to fund preventative or early intervention because all the money has to be spent on crisis care. But, as us service users know, having the opportunity for early intervention care or support can prevent a huge amount of later crisis.

In an ideal world (or, at least, the way I see it) there would be a period of extra investment in mental health services, so that people can get support before reaching crisis point, but the patients already in crisis can also get the best possible care. Early intervention can often (although not always) lead to crisis being averted, and is much, much cheaper than inpatient care – as well as being much more bearable for sufferers and their families.

In some ways this seems to paint a somewhat drear picture, where people are left on their own to suffer because the system can’t handle its workload, and where there is always the risk of patients falling through the gaps with devastating consequences. But I want to state it now that the NHS is awesome. For all it’s faults (and believe me, people complain about it all the time) the knowledge that I could be homeless with no money but still get medical care is an amazing comfort. From what I gather, nowhere else in the world boasts a system completely free at point of delivery.

The NHS is a huge blessing, and for all the ways I would change it, I wouldn’t give it up for a private system for anything. But I’m aware that everyone feels differently about it, so I’m opening up the floor for discussion. Please do comment – especially if you are from elsewhere in the world and have a completely different system. It would be good to know what you think.

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Inevitable

So, this week I’ve done the thing that apparently every bipolar sufferer does that I swore I wouldn’t do, and went off meds.

It started so innocently. On Tuesday morning,I forgot to take my Lamotrigine. I’ve only been on it a week, and am still only on a tiny amount, so it probably wouldn’t have had any effect. I’m just not used to taking meds in the morning – I’m not set in the routine yet. But then it got to Tuesday evening, and it was 1am, and I hadn’t taken my quetiapine yet. A little ‘what if’ entered my head, and that was it.

I should say, I was already on the way up. The quetiapine hadn’t been doing the job for a couple of weeks – it had worked well enough to make me drowsy and exhausted all morning and tired in the afternoon, but by evening I was wired, not tired, and couldn’t see the point of bed when there was so much else to be done. On Tuesday night, I knew that if I took the quetiapine as soon as I realised, I would completely lose the next day to exhaustion, so decided to give it a miss.

I really did intend to just start everything again on Wednesday. Absolutely honestly I did. But then I woke up.

Waking up was the big deal that kept me from taking anything. I actually woke up. After five hours sleep I was up and at ’em, made breakfast for everyone, and got everyone where they needed to be, before doing housework in record time. I was sold. It was the meds making me feel rubbish, I was fine without them, and would start living a normal life again.

The thing is, although I was on the up and off the meds, I was doing great. I got everything done I’d wanted to do for ages, I saw people, I enjoyed myself, but I didn’t do anything daft. I didn’t do anything that it says to look out for – no shopping, no clubbing, no flying to Vegas on a whim. Ok, I wasn’t even remotely tired on only fifteen hours sleep over four nights, but maybe I was catching up on all the sleeplessness I’d missed over the last few years. And my friends saw that I was doing great. People said I looked more like myself than I had in a long time, that I was back behind my eyes.

Friday saw the first visible signs of hypomania. A close friends, who is deaf and has to lip read me all the time told me I had to slow down because she couldn’t understand me, and another friend asked how my meds were because I seemed a bit ‘hyped’. By afternoon, my ICE girls had got together, taken my car keys away, and told me I had to do make a decision – go back on meds or carry on without to see what happened.

As is my normal state of behaviour, I did what pleased everyone else (see, I can’t have been that high!). So now I’m back on the treadmill of exhausted in the mornings, ok in the afternoon, agitated and wired in the evening, but with an added dose of pissed off that I had it so good for a while and can’t have more. But I guess that with only two good days before becoming classically hypomanic, I’ve recognised that I do need the drugs.

So here’s my plan: up the Lamotrigine as planned, but with the view of coming off the quetiapine as soon as humanly possible. I could just come off it now, but I don’t think my doctors are going to be as open to me making my own drug decisions if I just come off them with no medical supervision. I feel crap, but it will hopefully be for a season.

What I could really do with now is understanding the drugs I’m on. So, has anyone been on Quetiapine or Lamotrigine? Can you give me any insight?

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Kicking denial into touch….

When I started this, I had every intention of writing blog posts daily with all sorts of witticisms related to bipolar and motherhood and Christian faith, and how these three interleave (or clash with resounding wordplay!). The reality is, of course, that things aren’t ever as smooth as you think they are going to be.

The short to medium term plan with regards to my bipolar is to stop the antidepressants I have been on for years, and replace them with a mood stabiliser, so as to prevent the episodes rather than just treat them when they arrive. It’s now fifteen years since my first antidepressant – I started on Prozac (fluoxetine) at nineteen, and have since worked my way through most of the common SSRIs and a few tricyclics for good measure. Most of them worked for a while, and without many side effects, but even when they got rid of the depression it was never permanent, and we ended up back at the beginning, trying yet another drug. I’ve since learned that this is typical for many people with bipolar, and the fact that antidepressants work temporarily is one of the reasons it can take so long to diagnose.

I’ve had a bit of a medication crisis recently. Things haven’t gone entirely as expected, which has led to lots of stress and heartache. Having never really had any side effects related to psych drugs, it would seem that I’m really quite sensitive to the sedative effect of the mood stabiliser I’m on (quetiapine, for those in the know!). Reducing down the antidepressant venlafaxine whilst increasing the quetiapine was going really well until the very last little bit, which I really didn’t expect seeing as I had been on the maximum dose for nearly a year. I get very low when I stopped taking the last half tablet, but the amount of quetiapine needed to bring me back up caused an unbearable level of drowsiness and had a whole body effect – until lunchtime I couldn’t get up the one flight of stairs in my house without my whole body aching, which isn’t ideal when sharing a house with two small children.

Eventually, I got over the withdrawal effects of the venlafaxine, and managed to bring the quetiapine back down to a manageable level, but it’s left me very fearful of the next step of the plan – reducing the second antidepressant, mirtazepine. Because of the extent of the difficulty I had when on higher doses of quetiapine, my doctor will probably have to introduce another mood stabiliser, like Lamotrigine, or my ‘scary drug’ – lithium.

I had a bit of a reality check the other night. I realised that, although the bipolar diagnosis was a relief, I’m still in denial with regards to just how serious it is. I’ve suddenly been hit by the gravity of the situation – that being bipolar is likely going to mean a lifetime of medication to stay stable, and that I will have to either learn to live with side effects on a day to day basis, or suffer the consequences of not taking the drugs I need to stabilise my mood.

So today is not about kicking bipolar into touch, but about kicking denial. It seems to be an ongoing cycle that I think I’m fine and dealing with it, something happens to knock my confidence, and I have to go over it all again, dealing with it all over again. The truth is that I have a serious mental illness, which I ignore at the risk of my own health and safety and those around me.

Today I will kick denial with what hurts it the most – truth.

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