I often refer to myself this way: ‘sorry I’m a bit bonkers today. How high on the bonkers-o-meter are we?’ However, one thing I can speak to is, mental health. On that score, I have been ‘there’ and I can comment.
Where’s there? For me – depression. It’s hard for me to say even now. But there you go. I have chronic depression, with all the fun that comes with it and I’ve been on Prozac for it for about 10 years now.
I have mild (constantly feeling flat) to moderate (not being able to get out of bed) symptoms. Low mood and anxiety being highest among them. And the drugs do work – for me at least (sorry, The Verve). It took a couple of years of trying different ones and careful monitoring by a proper smart GP, but I found one I got on with and it’s made a massive difference. It means I spend most of my time in the mild stage, and sometimes I’m even cheerful.
The team at home consists of me, my wife and the two urchins. The eldest urchin is 13 and reminding us of that fact every day. The youngest, is 12 today and our swan. She now has a diagnosis. She has CTBP1, a genetic glitch that’s so rare that she’s the only one in the UK to have it. I don’t know the real figures of how rife mental health issues are in the swan community, but I’d lay even money that they’re higher than the rest of the population. Higher even than carers in general.
Why? Because I think all of the biggest triggers for mental health crises are when chronic or acute stresses get too much. The very fact of not having a diagnosis and the stress that alone causes, is a huge chronic stress that’s there all the time. And having complex and sometimes extremely poorly kids brings regular acute and constant chronic stress anyway.
What’s helped for me? My big take-home from a few years of counselling, has been self-care*. That is also different for everyone too, but I think have a take-away here. That thing that feels like self-indulgence or selfishness? That you’ve been putting off? That’s the very thing you should be prioritising*. I know, loads of people who are carers, just don’t get chance for any of that: no respite. We’ve worked on getting help from outside where we need it.
Having someone else to come in and help to get a break, isn’t a ‘nice to have’, it’s vital.
However even that is sometimes too much to face. The irony being those who most need the help may be too exhausted/depressed/beaten down, to ask for it. But we are all entitled. If we’re carers, we need help. The law says our local authority, whoever they are, must provide a Carers Assessment if we ask for one. How do I know this? Someone from the SWAN UK community told me.
I think the one other thing that works for me is knowing I’m not the only one out there: with an undiagnosed child and then a super-rare child.
I’m a stay at home carer dad, in a world where women are expected to do all things care related. But that is the real thing about SWAN UK. These things may all be rare, but the experiences aren’t unique and SWAN UK have spent a lot of time creating a framework for families like ours to come together and share tips, stories and sometimes just how awful or brilliant it is right now.
*For me it looks like online role playing games with friends. Taking time to do writing. Having five quiet minutes with a cup of tea. Cooking. Hugs. Enough sleep and enough water.