insomnia – Shiny journey

My brain, again

At the beginning of the summer, I had a doctors appointment. I had been waiting for this appointment for around nine months (which was an improvement on the year that I was originally quoted!). Part A took place in London, and part B was closer to home, and for this one, I was required to bring support, so I enlisted the assistance of Robert, as he knows me well. By the end of the appointment, I had two things. A wet face and a diagnosis of A-typical high-functioning autism.

A while back this was called Aspergers but medical chaps and chappesses are trying to phase that term out as it means the same as high-functioning autism. I understand why people like the differentiation. The autistic spectrum covers a huge range of people with hugely varying behaviours. And to put everyone in the same box can feel somewhat misleading. Some people develop better coping skills, others not so much. I have been told that high functioning autism means autism without learning difficulties, but I don’t know how true this is.

What I do know is that as a woman, my chance of being diagnosed is only 20% compared to that of a man. Women apparently develop stronger coping strategies much earlier, thus it is less likely to be picked up. And everybody has quirks, things that would qualify as being on the autistic spectrum, but that does not make someone autistic. Having lots of quirks, that have always been present, does. I can never appreciate what it is like to have a neuro-typical brain and I guess the reverse is true too. (Incidentally, the a-typical bit means that I don’t present as a typical autistic person, in case anyone is wondering, I have exceptional coping strategies! I rock!).

When I first got my diagnosis it made sense of the obvious things, my social ineptness in unfamiliar environments, my broken sleep and levels of anxiety. But as I started to read up, it has become increasingly apparent that other things that I do are also common traits. Like rarely initiating social contact despite having lots of love for my friends. It mostly just doesn’t occur to me. And if I have one appointment in the afternoon, my morning will most likely be entirely unproductive until that one thing is done. I was diagnosed as hyper-sensory in my early twenties and apparently, this is true of almost 80% of people with autism. When Robert recently got into my car in the evening, having used TCP disinfectant in the morning, it was still strong enough to make my eyes water. And I should probably not share the most voraciously grim smell that I could smell in Kate’s car recently that no one else could.

The biggest contention is how I think. I never stop, even when I am sleeping, my brain is running variables on situations and I have to make a conscious effort to stay asleep. And am not just considering one thing, it is usually two or three. sort of like listening to piece of music and being able to pick out every instrument’s melody. Or maybe more like listening to a few different pieces of music at the same time and being able to follow them all. Curiously, analogy aside, I find that listening, playing or dancing to music really helps my brain to switch off its usual chatter; the quiet is sometimes nice. I recall an ex once asking me to tell him everything that was on my mind. Forty minutes later he was looking like he had just been steamrolled into oblivion and back. He was a brave man to ask that question!

The most utterly best thing about diagnosis is that I seem to be going easier on myself. I am not judging myself as harshly when I struggle with things, which has led to me mostly feeling a lot calmer. It is also giving me permission not to do everything just because I feel I ought to. This is massively empowering.

I had many reservations about writing this post, but it has been on the forefront of my mind for a while and has made writing other things more difficult. I am also aware that this might change how others perceive me, but that is ultimately down to them. I am no more or less me than before my diagnosis, but I am happier.

Map Point. What am I scared to say?

Photo note, I love liquorice allsorts, but not the fondant, they are the wrappers to the good stuff!

I think I can hear milkfloats

How is it that when I have nothing to get up for I am in bed by half eleven, and when I have to be up at the crack of dawn, I seem to think that 3am is a good idea? Or when I have been up chatting with a friend all night and suddenly we are both aware that we can hear the milk floats driving past, without ever being aware of how quickly the time has passed. Relationships with time are peculiar, exciting days go fast, boring days don’t. I have friends who are up at daybreak and others that rise in the afternoon, some of whom survive on four hours sleep a night. I think having this little sleep would hurt. We think of time as steadfast, regular and linear, but in actual terms, it is generally anything but.

Sometimes I seem to work best with a deadline. I love the fact that I write every day, it provides a structure within my day. We all have things that are regularly timed. Times when we eat various meals in a day, times when we do specific things within a week, a month, a year. We all find our own rhythms and most people with instinctively know whether they are a ‘day’ or a ‘night’ person and we fill our schedules accordingly.

The idea of circadian rhythms is one that appeals. Sleeping when it is dark, waking when the sun comes up seems like a much easier way to operate, more in tune with what our bodies need. So often in my life, I can see really simple solutions to challenges that I face, but for some reason, making things more complicated seems to be much easier.

I think having insomnia really challenged my relationship with time. Before insomnia, I think I was fairly fixed on when I thought things should happen. The hours between one and six were definitely those meant for sleeping. But as I couldn’t do what I expected to do at the time I expected to do it, I felt cross, really frustrated with myself. And then I started to change. I accepted that I would quite possibly be awake at some point and started to use the time more productively. Washing up at 3am with a cup of tea and the prospect of an hour or so of inane fb gaming became something to look forward to! And then I stopped viewing insomnia as something bad, and things became easier. My sleep didn’t get any easier through this acceptance, but I stopped letting it control my sense of wellbeing. This felt important. I stopped resenting the time spent awake in the night.

I am still not very good at organising a regular schedule in my life, but I am great at appreciating what I am doing at the time that I have chosen to do it. Perceptions of time continually alter, but if I can let go of my fixed ideas of what it should be, I can maybe enjoy it more.

Map Point. Where in my life are fixed points preventing my happiness?

Who needs sleep?

The first time that I can remember not being able to sleep was over my degree exams, I was in my twenties. I suppose for some people it is entirely normal to react to a stressful situation in this way. This period was short lived, and I thought no more of it. It was after my friend Michael died some years later that insomnia visited my life with an increased intensity, that never really entirely left.

There seem to be two main parts to insomnia, falling asleep and staying asleep. The falling asleep was an issue. I recall my Mum telling me that as a baby I never slept for more than a few hours and then was awake for the next six. She used to use a detuned radio to help me dose off, and this for me is something that mostly still works. Only now I have upgraded a detuned radio to YouTube meditations. I know that within a couple of minutes I will be in the marvellous land of shut eye. But then there’s part two.

The hour of 3am is an hour that I see too much of. Almost doesn’t matter what time I get to sleep, 3am is my sleep time homing beacon. I will wake up, and generally, I will recall all the things that I have been thinking about when I was asleep and then I will start to actively think about them in my more wakey up status. This aspect of insomnia is one that I have found to be especially harsh. During the small hours, I sometimes clean my house, play inane facebook games or a variety of other tasks, including online discussions with all my fellow insomniacs. By around five thirty, exhaustion kicks in and I can sleep. Sometimes.

Sometimes I think that my insomnia is a sort of tribute to Michael. I know that when he was diagnosed with cancer he almost stopped sleeping, eager to enjoy every moment that he had to its absolute fullest. And maybe that is something that I have latched onto too. So much of life is taken up with practicality, that it’s utterly essential for me to make use of all the time that I have. It is too easy to allow time to be sucked away.

So with this thought in my mind, whether I get a whole night’s sleep tonight or not doesn’t really matter. What matters is an enjoyment of my time. Whether I have a sleepy day and do very little, or ten blissful hours and wake up feeling like sunshine, embracing each day with as much or as little energy as I have is what is important. Today has been a sleepy one!

Map Point. What do I love to do?