Today I’m reflecting on a comment. A few days ago a relative asked if I wanted a glass of wine with dinner; I declined, explaining it didn’t mix well with my meds. Someone else, overhearing this, expressed irritation that my partner Tom and I “go on” about our meds. I keep pondering this. Do I (we?) talk about meds too much? And are others right to be annoyed? I know I mention them a lot, especially around mealtimes – some have to be taken with food, others before meals, and if I mistime a does it’s a challenge not to fall asleep with my face in my plate. I guess the simple fact is that I do talk about them a lot, because that reflects their massive impact on my life. Trying to manage them takes up almost as much mental space as managing the bipolar itself.
My meds have long affected whether I can go out – to choir, say, or an evening class – and get myself safely home again. They have impacted for years on my ability to get up early for work or travel. They affect whether and when I can drink alcohol; whether I can stay awake until the end of favourite programme; what my energy levels will be like for the day. My life revolves around repeat prescriptions and making sure I don’t run out, particularly around Bank Holidays or trips away from home. I am constantly aware of the need to make sure I’m well hydrated and book in for regular blood tests (lithium), and to take care when it’s hot so I don’t get sunburn or sunstroke (quetiapine). I have for some time now also taken drugs for the side effects of the bipolar medications. I cannot tell you how I resent the fact that I must take unpalatable laxatives daily, without fail, or endure severe bowel problems. Since the summer I have also been on a daily blood pressure drug (both quetiapine again).
But as I say, it’s not just me. Tom takes meds for two conditions, again in different combinations at different times of day. To some extent our daily life is dominated by the drugs we need. Before we leave the house we ask each other, “Have you got your meds?” and at mealtimes, “Have you taken your meds?” If we go out we pop just enough for the evening into my handbag. Perhaps my medication use has become normalised by this, and by association with others who take prescribed drugs. After all, most – not all, but most – people I know with a mental health condition take medication.
In accordance with suggestions from the National Mood Disorder Service, I have recently started thyroid augmentation and I’m also titrating upwards towards a therapeutic dose of lamotrigene. The addition of lamotrigine means I now have to stay vigilant for nasty rashes, although hopefully by this point in treatment I have escaped the one that’s potentially fatal (joy!). I was also recommended pregabilin for anxiety. I am glad of this, as just as my moods have stopped swinging back and forth, acute anxiety has started to rear its head. It’s really quite debilitating and I‘ve become slightly worried about just how much diazepam I am using to cope; it’s just not a viable longer-term option, so as of today, pregabilin is in the mix too.
The idea is that once I am sufficiently stabilised on the lamotrigine, we can begin slowly withdrawing the quetiapine (the lithium will stay). But we’re not at that point yet, and as a result I now take fourteen different pills and one sachet of medication every single day:
- levothyroxine for mood
- lamotrigine for mood/rapid cycling
- quetiapine for mood stabilisation/anti-manic
- lithium for mood stabilisation
- pregablin for anxiety
- losartan to tackle the high blood pressure caused by the quetiapine
- senna to tackle the bowel problems caused by the quetiapine
- Movicol, again for the bowel problems
In other words, I am well into the realm of polypharmacy. Health think tank The King’s Fund defines the term as “the concurrent use of multiple medications by one individual” and notes that in the context of an ageing population it is increasingly common. Traditionally, polypharmacy has been seen as something as something rather negative and as something “done to” patients, particularly vulnerable or older adults, without due care for the overall impact of multiple medications. Indeed I am fully expecting this post to generate horror from the anti-psychiatry brigade and concerned comments from friendly clinicians worrying that I’m on far too many drugs. The King’s Fund however notes that it can be beneficial in some contexts, and suggests it may be more appropriate to distinguish between “appropriate” and “problematic” polypharmacy.
Is polypharmcy appropriate in my case? Yes, I think it is. I’ve gone from unmanageable rapid cycling to mood stability in a couple of months, although as I say the anxiety really needs some work. But of course there are downsides. Without pre-payment, all my drugs plus additional diazepam would set me back just over £70 a month. I do worry about the cost to the NHS – although I have to remind myself they are this remains a cheaper option than Home Treatment or inpatient care. The main consequence for me is that I now have to manage a significantly increased number of pills, taken at three different points throughout the day (formerly two), something I would fail woefully at without a huge dossette box and a pill reminder app. I find it harder and harder to remember exactly how much of each drug I am on. Away from home recently and faced with the possibility having to ask a local doctor for an interim prescription, I realised that for the first time in my life I was not entirely sure of all the doses of all my meds.
So maybe I do “go on” about my meds. But that’s because living with polypharmacy is complex, sometimes difficult, and the consequences of getting it wrong could be huge. I guess I feel that saying that a disabled person “goes on” about any form of treatment is essentially saying that they “go on” about their disability – after all, no disability, no meds. Not having to take meds confers a level of freedom and privilege that younger and/or non-disabled people probably don’t even realise they have. When I took one or two pills daily of a single antidepressant, I had no clue. Yes, I fell into the camp of those maligned by pillshamers, but taking my single drug at the same time every night right before I went to sleep had no real negative effect on my life. Right now the ups currently outweigh the downs, and after all, the goal is to reduce the use of some drugs by the introduction of others. So for the moment, Polly is my friend. Even if she makes me rattle.