The Forty Years' War

Hi!
 
If we haven’t met in person, we are probably friends online, or maybe you’ve come across my work on ‘The Notes and the Words’ or DUP. I tend to go by Wafflenose or Ellie online. I have decided to be brave, or as brave as it’s possible for a pathologically shy, mild-mannered, socially-phobic English woman to be. I’m going to share a bit about my journey with a lifelong mood disorder, in the hope that somebody might learn something, and that I might develop more understanding of my condition, which still baffles me from time to time.
 
Like most people, I don’t have many memories before the age of 3 or 4, so can’t comment on how I was before that. However, there was a bit of a shadow over my very early life, which I’ve depicted with a kind of grey cloudy area on this map of my life.
 
At this point in my journey, I’m not ready to share the actual specifics of my problem, but it had definitely reared its head by the time I turned 5. As soon as I’ve had hindsight on any part of my life, and sometimes actually at the time, I’ve been able to see that my life was divided into pretty discrete light and dark sections. Hopefully this is pretty self-explanatory. The light sections were when I was feeling fine, and the dark ones were when I was feeling rubbish. The bad patches would vary in length, but as I grew older they would settle into a pattern of lasting around four to six months, and mostly closer to four. The OK parts in between varied wildly in length. My first three episodes occurred when I was 5, 7 and 9 years old and were precipitated by starting school, no specific event, and moving to a different part of the country, respectively. I then stabilised until the age of 12, when I would experience an annual dip, starting with the new school year in September. After a few years of this, I became very fearful of the autumn and all it represented.
 
Entering adulthood and heading off to university, the episodes became longer, worse and closer together. Sometimes there was an obvious cause, such as a bereavement, but often there wasn’t. At times, I would only have a couple of good weeks before hitting the next crisis. Finally at the age of 19, while studying music and psychology at degree level, I dared to ask myself what was going on. I did some research, read other people’s accounts about their difficulties, took a few tests online, and my disorder revealed its name to me. It helped to know what was happening, but throughout my late teens and most of my 20s, my mood was totally out of control. Apart from the autumn thing, the bad patches were quite unpredictable and dominated my life quite a bit. As this is only an illustration, I haven’t counted out all of the episodes, and there were more than this. I estimate that between the ages of 5 and 40, I probably had about 25 of them.
 
Thanks to a lot of very aggressive treatment, things finally stabilised for a while when I was 27 years old. I had a baby and coped really well for quite a few years, managing to ditch my medications and get signed off by my psychiatrist. I had a difficult ten months after my second daughter was born, but it wasn’t strictly my mood disorder colouring my life at this point. Part of the problem was the exhaustion from having an unsettled baby who cried non-stop (while also parenting a toddler) and the prospect of returning to work.
 
My first child was born in the autumn and I finally managed to break my bad associations with that time of year. She was just like a light in the darkness and her birthday is always something to look forward to as the days grow shorter and darker. For nine years, I found some semblance of normality, was always guarded about my prognosis, but at times considered myself cured. There was another large shadow upon this time. Always reserved, various events in my life made me terrified of socialising, going to work and pretty much leaving the house. The fear remains to this day, although I oscillate between thinking it’s pathological, and thinking it’s normal/ just part of my personality.
 
In the broadest sense, my first 40 years could be summed up as looking a bit like a zebra crossing, with clearly demarcated black and white stripes. Some time in my 41st year, all of that changed and I still have no idea why. Over the course of several months, I struggled to cope with daily life. I would do everything I had to do at work, at home and with two children, but after the colossal effort required to get anything done, particularly teaching, I would flop out on the sofa at home, or a chair in the staff room at work, and the day’s worth of bottled-up feelings would catch up with me, making me feel overwhelmed both mentally and physically. Waves of almost visceral pain would crash over me and I felt like my blood had been replaced with cold, dark ink, which somebody had just decided to shake up and down. After a few months, I overcame the crisis, but the past five years have been very different to what came before. I’m constantly entering bad patches, but sometimes the medication cuts them off after a couple of weeks. Or due to the coping strategies I have developed to cope with a lifelong psychiatric illness, I will talk myself ‘up’, delay the inevitable, then have rapidly changing peaks and troughs throughout any given day. My life no longer resembles a zebra crossing. It’s more like an out of tune TV. There are dark and light spots all over the screen, but they flicker, move and change constantly. My mood isn’t good or bad; it’s many things at once. I can be simultaneously elated and desperate. Being happy or contented often drives me to despair – partly because I know it can’t last, and partly because my body or mind simply can’t cope with heightened emotion. Something within me does not fully recognise which emotion I’m feeling, so they all evoke shadows of each other. I have periods of stability, but they are brief. Most of the time, I’m all over the place and not even during the same day... more like the same sentence. In a way, this feeds creativity. Overall, I don’t think I’d choose to change things, but sometimes I wish I understood them better.
 
I also did some drawings to represent what has happened. I'm very bad at drawing, and indeed all forms of visual representation. I also don't have a perfect memory, so it's not to scale. My first diagram represents the first 32 years of my life. On the x axis, we have time, and on the y axis we have mood. Again, we have some greyness and question marks over the first few years, followed by three dips representing bad patches at 5, 7 and 9 years old. The little zigzag represents the normal ups and downs of childhood, and soon after that, you can see what are supposed to be my annual difficulties, all the way through my teens and 20s. Towards the end of this diagram, the lows become lower and closer together. I was officially diagnosed at 20, and more fully later on. The last bad patch on this diagram lasted ten months, and was due to a large amount of stress and having a very unsettled baby. Her first few months were difficult, but she is fine now. From 32 onwards, I was much more stable, despite becoming increasingly scared of seeing people socially, going to work and leaving the house. Despite my fear, I never stopped doing the things that I actually needed to do, so I've been lucky enough to remain in circulation, so to speak. I still don't socialise much at all.
 
You might be wondering about the green dots all over the page. These have been scattered at random, but are supposed to represent good, bad and indifferent individual days. Life being as complex as it is, things have rarely been all bad or all good. There can be good days mixed in with the bad, and vice versa. The red line shows the trends and demarcates the general patterns of illness. I wanted to show that there's always good, bad and middling in the mix, whatever I have been through. Maybe the same is true for you. I sometimes resented being told this, but there is positivity out there and we sometimes need to actively look for it.  
  
Please note that although there have been some great days, weeks, months and events in my life, at no point has my mood truly crossed into mania. People ask me from time to time if I'm bipolar, and it's not something I take lightly at all. I am not, and to claim that I am would be an insult to my friends who really are. When I explain that I have a bit of a mercurial personality, an artistic temperament and never, ever switch my brain off, sometimes people take that as further evidence for having bipolar illness, but I actually don't. I constantly channel my mind into puzzles, learning, creating, volunteering and all kinds of other projects, simply because letting it stay still is a recipe for disaster. I've found that sitting around thinking about things too much is generally not good for me.

The second diagram starts where the first one left off. My 30s, though plagued with fear and insecurity, were my most stable years to date, hence the vastly oversimplified straight line. I've added the random green dots as before, to show life its richness and complexity. After a long and unexpected low patch which started at the age of 40, my lifelong pattern changed. You can see a frantically oscillating wavy line for the remainder of the page. Instead of putting individual green dots all over the place during this period, I've illustrated a typical day with the vertical line of silvery-blue dots. They show that many levels of mood somehow coexist, in a way that I haven't managed to figure out myself. My worst episodes last for very brief periods of time nowadays, but at the same time, stability is now a thing of the past.

Whether you have listened to this, or listened and watched at the same time, or just read this on DUP, thank you very much for your time and attention. I hope that somehow my words might somehow help somebody else.