What do you do all day?

I was the first of my friends to decide to start a family. I was only 22, and most people in my social circle were a long way from settling down, let alone having a baby. They tried to be supportive during the pregnancy and in the early days of parenthood, but I could tell they didn’t really get why caring for my newborn son left me so exhausted and preoccupied. Sure, they knew that babies wake up in the night, and you have to get up and do something to sort them out, but I was at home with the baby 24/7, right? What did I do all day?

It’s pretty near impossible to explain to a non-parent just how much work it is caring for a newborn. It’s hard to convey how the act of feeding itself can take up so much time (great, he’s drifted off! I’ll just carefully – oh no, he’s suckling furiously again), how the feeds lead to nappy changes, which can lead to unplanned bathing and a total change of clothes those times the nappy proves inadequate. Which, of course, leads to putting on the washing machine. Again. Most of all, it’s hard to explain the weight of total responsibility, that it’s down to you to keep the baby fed, clean, rested, to make sure he or she is not too hot or too cold, to notice if s/he might be becoming sick – and that this really does constitute a full time job. 

Right now, it’s almost 14 months since I spent a day at work. In the early part of my sick leave, it was easy for my friends and family to see why I couldn’t go into the office. I was a mess, either persistently crying, or channelling a manic energy, then noticeably sedated by my medication. But now two years from its start, I think (I hope, I tentatively hope) that this episode is beginning to draw to a close. I am able to do so much more than before. I meet friends for coffee. I am taking regular exercise. I have been attending a weekly writing class, and have returned to singing in two choirs. This is the stage at which people with little understanding of mental health are probably thinking: but then she should be back at work, right? What about the rest of the week? I mean, what does she do all day?

I’m sure I probably look good if you catch me in the coffee shop, or bump into me on the way to choir. It’s easy enough to explain that socialising, singing, getting more exercise, and generally structuring my week, are therapeutic. What you probably won’t realise is that just as two thirds of an iceberg is hidden from view, so is at least two thirds of my recovery. I think that one of the defining features of having a disability is that disabled people have to make sure a variety of things get done (or are avoided) just to live and function; things that those without a disability probably never have to consider.

I have to take my meds. Sounds simple, and wow, I wish it was. I have to take them at the right time, in the right ways, or I may mess up a blood test, fall asleep in my dinner, or be unable to sleep due to horrendous nausea. Like everyone on lithium therapy, I have to get those bloods done regularly, and make sure I never get dehydrated, to reduce the chance of the lithium damaging my kidneys or thyroid. One accidently doubled dose of the lithium could lead to toxicity; while one missed dose of quetiapine means I will probably be unable to sleep for even a few minutes, which could kick off the whole bipolar cycle again. Then I have to take the meds prescribed to overcome the side effects of the original meds (three extra prescriptions per month at the last count). And I have to make sure I have enough of the whole shebang to see me through Bank Holidays, family holidays, or weekends away.

I have to manage my sleep. I avoid late night activities and excitement and need to stop doing anything that is making my mind race at least an hour before bedtime. I have to time the quetiapine around dinner time (although helpfully, I’m not supposed to take it with food) to make sure that it kicks a few hours later to give me a normal bedtime. In a year of taking it, I have never become accustomed to its effect on my mornings. It’s called hypnogogia: a period spent trapped somewhere between sleep and wakefulness, embroiled in strange and often unpleasant dreams, willing myself to wake fully, but finding myself unable to do so. It’s like being underwater and swimming for the surface, only to be dragged back under by a sea monster. I try to get myself awake and functional by 9.30, but this week it’s been closer to 11.00. I’ve given up on alarms – I am awake enough to switch them off, yet asleep enough to sink right back into a dream. I have to try to schedule meetings or medical appointments from late morning onwards. All of which means, of course, that I am a very long way from being able to be at a desk at 9.00.

I have to monitor how much I do and how it’s making me feel. Yes, it’s good to socialise and fill my week with structured activities, but I also have to make sure I don’t become over-stimulated or agitated. If I start to feel stressed by my plans for the week, or equally if I begin to be obsessed with doing more and more, or single-mindedly engrossed in one particular activity (writing’s the big one at the moment) I have to pull back. It’s important that I keep to my usual activities, but I also have to know my limits, and that can be hard for people to understand. I know, for example, that I can just about cope with attending my writing class in the afternoon and then choir rehearsal in the same evening; but it’s no good asking me to come to the pub afterwards. That would be a step too far.

If my med side effects are overwhelming, my sleep pattern is completely out of whack, or I am on a self-imposed “time out” from activities because I’m becoming overwhelmed, you won’t see me at all. Those are the days I stay indoors, achieving not much more than feeding and washing myself. This is the bottom of the iceberg. Just like I once spent all day, every day keeping that scrap of a newborn alive so that he could grow to be the lanky 15 year old I have today, I now spend most of my time keeping myself as well as I can possibly be. So if you’re wondering what on earth I do all day, it’s, you know, nothing much. Just keeping myself alive.

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