Having my treatment come to such an abrupt end was devastating

First published on MadCovid, 23 April 2020

There was a shocked silence in the lounge area of the acute day treatment unit (ADTU): a silence that lasted a good 60 seconds.

Then the questions started. Did we have to go home right now? Would we get home visits? What was going to happen about medication management?

It was March 18 – a few days before the UK officially entered lockdown – and we’d just been told that the ADTU was closing its doors with immediate effect to prevent the spread of coronavirus.

I’d been attending the unit for two weeks, having narrowly avoided being hospitalised, and although I was still very poorly, I was benefiting from some amazing care: twice-weekly meetings and meds reviews with an excellent psychiatrist, daily one-to-ones with gentle, kind and caring mental health nurses, and a safe space away from everyday life.

Having my treatment come to such an abrupt end was devastating. I was less unwell than I’d been two weeks ago, but I was far from stable, and the prospect of suddenly having my support withdrawn was frightening.

The only consolation was that my allocated keyworker – a lovely mental health nurse called Theresa – would be doing daily home visits.

Or so I thought.

The next day, my husband woke up with a temperature, and we knew that we’d have to self-isolate for the next 14 days. And that meant no visits.

Theresa phoned daily, but without face-to-face contact, it felt awkward. I found it hard to express myself, and although Theresa could tell from my voice if I was having a particularly bad day, there was little she could do.

I felt lost, cast aside, cut adrift.

Two weeks after the unit shut, on a Friday, I was discharged from the ADTU back to the CMHT. Usually, this would have been a joint appointment with the mental health nurse and my community psychiatrist, but it all had to be done by phone. And the psych – who, in fairness, is the best I’ve ever had – didn’t even ring me until the following Monday as he was dealing with an emergency.

The past month has been – as for everyone – full of ups and downs.

My meds were changed while I was in the unit, and getting prescriptions has been a challenge. At first, the ADTU nurse was posting them through my letterbox, but since being discharged, I’ve had to get them from my GP. He’s yet to receive my discharge summary so has no official evidence of the meds change, and wondering whether or not he’d prescribe the right things was a worry. And my brain is so foggy that I’ve lost track of what to take and when. Thankfully, my husband is sorting it out for me.

Even though I’d been admitted to ADTU acutely suicidal, I now have no support in the community at all. I previously had an excellent care coordinator who was my first port of call when I was unwell, but she was taken off my case last summer, a few weeks after an inpatient admission, as it felt I was managing well enough to not need her.

I’ve also lost my informal support network. My friends keep me going, but of course I can’t see them now, and although we’re keeping in touch on FaceTime and Zoom, I really, really want a hug.

Compared to many mad people, I’m lucky. I live with my husband and two kids, and as a freelance writer, working from home is normal – although work has been very busy, which brings its own stresses.

My husband was working from home before lockdown as I wasn’t safe to be left alone, and that’s continued. He’s shouldering a lot of the domestic tasks to take the burden off me. But I have extreme guilt about the amount of time my children are spending on screens and my inability to entertain them, reaffirming my belief that I’m a failure as a parent and they’d be better off without me.

My mood has stabilised a lot, thanks to the changes in my medication, and although there have been days where I felt deeply, deeply depressed, days where I’ve lost my rag, and days where I’ve sobbed down the phone to my friend, I’m no longer suicidal, but that doesn’t stop me being scared about what will happen if my mood crashes again.

My next psych appointment is in three months’ time, so who knows whether it’ll take place in person or on the phone. If I need help, I have to negotiate the horrors of the duty team – and no doubt be told that all I need to do is have a nice bath and a cup of tea.

If things get seriously bad, I know I’d be at risk of being sectioned and hospitalised, and this time there’d be no visits from friends and family.

I also feel trapped. I know that if the suicidal thoughts come back, I absolutely cannot act on them. It would be grossly unfair to leave my husband alone with our children at this time, and grossly irresponsible to waste hospital resources if an attempt failed: the last time, I was in ITU on a ventilator for several days. It feels like my escape route has been blocked off.

Covid itself hasn’t affected my mental health – thanks to my ongoing depression, I have a blasé attitude to whether I live or die. But lockdown definitely has.

The lack of certainty, a predicted end point, is really hard. I’m struggling with the juggle of work and kids, and doing a bad job with both. The stress sometimes feels as if it might tip me into hypomania – I’ve been getting that familiar restless, fizzy-headed feeling – and while that would be welcome right now, it’s always followed by a rapid downward spiral into an all-consuming low.

I know this will end, but in the meantime, I have to keep going as best I can: taking my meds, talking to friends, keeping a mood diary, using PRN, and phoning duty if I really have to. I’m trying to focus on self-care, and treating myself to afternoon naps, evenings in my hot tub, and chocolate.

Daily life is a struggle at the best of times, and this is definitely not the best of times, but I just have to focus on riding this time out and coming through it in one piece.