People who know me and my diagnoses sometimes comment on how well I seem to cope. Or compare me to some other person who is struggling and say how good I must be or how bad the other person is because I look like I am doing so well. If I have chosen to disclose one or all of my diagnoses to people who know me less well I often hear how you’d never be able to tell how much I struggle or how hard I find life or that I have even one mental illness never mind two and autism. That you’d never know that I’m on meds to stabilise my mood and for my depression and I see a psychologist once a week and have done for years.

I work full time. I am a solo parent to my autistic daughter who also has several other diagnoses. I create and exercise a bit and socialise a wee bit. I volunteer where I can at the school and take my daughter to activities. I generally mostly keep up with my life, pay the bills and do the housework and spend time with loved ones. This is what people see. What they don’t see is what it takes to keep things going.

One thing people might be surprised by is that almost every day after work, I pick up my daughter, go home and put on my cosiest most comfortable clothes and get into bed. I usually stay there for anywhere between half an hour and several hours before I can continue with the evening.

Having both a neurological difference like ASD and a severe mental illness like BPD means that getting through each day can be exhausting for me. All day I have coped with sensory input that is often well beyond my comfort zone. I’ve had to be flexible to changes in plans and fit in with the way neurotypicals like to do things. I’ve tried to watch other people’s body language and work out what they are saying while not saying it. I’ve remembered social rules and made the effort to keep my “normal mask” well in place. Often I’ve needed to call upon some or all of my strategies to cope with my emotions. But the effort of doing these things and the toll they take on me is significant. When you add on a high needs child and the fact that I’m a solo parent it’s understandable why I feel the amount of overwhelm I do on a daily basis.

So I do what I need to do to restore myself after the work day. In the winter that means wrapping up in my coral fleece blankets and laying on my bed. Sometimes in silence just looking out the window, sometimes listening to music or a podcast. Usually I have a fidget or a piece of fleece that I rub on my face.In summer I’m usually face down on my bed (extra pressure on the front of my body – mimics the feeling of being wrapped) with the fan blowing on me. The sensory soothing helps me cope with each day.

I worry that my daughter is missing out, on time with me and time being supervised by me (she doesn’t get a lot of homework done). I worry that we don’t eat healthily enough because I am in bed instead of cooking healthy dinners. I worry about whether this is a sustainable way of coping with life, and whether this indicates I should be trying to live a life that doesn’t take such a heavy toll on me.

I am trying to take life one day at a time and just do what gets me through. But the old fear that I am not trying hard enough, doing well enough, is still nibbling at the edges. I feel like things are so finely balanced it only takes one extra thing to tip me into overwhelm. This is where depression can sometimes get a foothold too. If it’s been a bad week and I’ve needed a lot of recovery time depression tells me how hopeless I am. How this coping strategy is really laziness and letting my daughter down. Depression tells me I am not trying hard enough and that I should be able to get through the day without retreating for downtime. I need to keep reminding myself that depression is not my friend and it tells me lies. It has its own agenda. Sometimes life is minute by minute what gets us through and that is good enough.

Stay safe and warm friends. Ka Kite