The Background

02-2016-12-08-13-47-41At the beginning of August 2016 I was living a normal life. Maybe not “normal” in the sense that many would call normal, but normal for me. I’d just turned 45, my husband and I were about to celebrate our 14th wedding anniversary, and we’d still failed to unpack or sort the chaos in our small flat following a rushed move a couple of years earlier. I spent my days studying when I could, playing music, running, being with our animals, and forgetting to eat lunch. All as usual.

I had, however, started to feel unwell again during the previous year. I’ve struggled with my mental health for decades, and was diagnosed first with anxiety and depression, then later with bipolar disorder. But I’d been reasonably stable since around 2013, had started to play the viola in orchestras again, and had generally spent much more time out in the world, reconnecting with friends, trying to rebuild my life, in the hope that I might one day be able to work again and be back to some sort of genuine “normal”.

But my health had started to decline. I’d had to drop a concert and several chamber music sessions, withdraw from my Open University study yet again, pull out of some races I’d planned to run, and by July I’d been back to my GP and picked up a prescription for the medication I’d successfully come off in 2013. It seemed obvious that I was headed for another breakdown, another episode of depression.

However, looking back now, there were things that didn’t tally with the descent into breakdown. For many years, I assiduously kept a mood diary. Just a simple cross in a box each day, to indicate an elated or depressed mood. My mood was still reasonably stable. A little under, but nothing that would indicate a severe mood shift. On the same chart I had a box into which I’d write a “score” for anxiety each day. The anxiety measurement was consistently high, and rising. That anxiety perhaps explained why I spent so much time feeling sick, why I would suddenly panic and shake for no apparent reason. I needed to calm myself somehow.

I was also perpetually exhausted. Going out to rehearsals sapped my energy and left me worn out and needing to sleep for days. I couldn’t drag myself out of bed much before ten or eleven, even on the best mornings. I’d go shopping to the supermarket and buy a small trolley load of groceries then come home and need to sleep for a couple of hours before I could put them away. That would then be me finished for the day. Going out for lunch or dinner would entail a two day recovery period. I’d had times like this before, but things were getting noticeably worse – no matter how well I ate, or how much mindfulness I practised, or what CBT tools I used, I was bone-numbingly exhausted whenever I went out.

A few people suggested chronic fatigue syndrome, but I knew that wasn’t right. I was still running, and once I’d recovered from the exhaustion I could easily do a 50K training run. Although I was really struggling at races – at the Brighton Marathon expo I’d had to take my husband with me to collect my bib as I’d been hardly able to speak to tell them my name. When other runners chatted to me during marathons I felt my legs get weaker. I got to an aid station only 30K into an ultra (no distance for me) and was unable to get a cup of tea because I had a huge panic. I sat by the side of the trail, shaking and in tears, before eventually pulling out of the race, assuming I had the flu because I felt so ill.

But the summer was approaching. I knew things would be quieter and I’d be able to catch up on sleep and get some rest. I could also pause my training schedule, chill out a bit, and I’d planned to spend much of the summer playing orchestral and chamber music and catching up with friends. I knew it would be busy and I’d be camping, but I also knew it was something I enjoyed. I’d even bought a new tent!

And so I set off with my tent, but without any idea of what was going to happen. I didn’t know then that I was only days away from something that would start to trigger a chain of events that would change my life for ever. Neither was I aware that the next few weeks and months would be an emotional rollercoaster like nothing I’d ever experienced before, and that the biggest discovery of my life was about to occur.

Unable to Wait

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This wasn’t the original first post for this blog. I wrote another one, over a month ago, which was to have been posted after things were “properly sorted” and I had the confidence of a piece of paper to enable me to tell my story to the world.

However, “proper sorting” is taking too long. I was told that things would be sorted last week – they were not (more on that in the future) and the effect on me was so catastrophic that I became suicidal and spent 48 hours living one hour at a time, waking in the night screaming, constantly tearful, and hanging on hour by hour, minute by minute.

I’ve never been good at concealing things. I can keep other people’s secrets totally reliably, but all my natural instincts are to be open, straightforward, and plain-speaking about my own life. I have written candidly about my mental health in the past, and for me that is much much easier than concealing the difficulties I’ve experienced. This new facet of my life will be no different. After last week’s disaster I finally started to feel that life was maybe worth living again when I decided that I would proceed with the original plan (slightly modified) with or without the piece of paper. I also now know that getting that piece of paper might be difficult, and a battle, an uphill struggle – the person I saw last week told me that “intelligent women were a problem” and that I was “very complicated”. I became so distressed during the appointment that I ended up self-injuring. My husband and I will continue to fight on, but my new life and way of living has already started and I need to be open about it now because concealing it is destroying me from the inside.

I don’t expect most people reading this will grasp the full enormity of what has happened to me since the summer. I do know that other people have been through the same thing and will fully understand. Some who’ve known me a while and have a little knowledge of their own might not be surprised. Maybe some won’t believe me at all (hence part of the desire for the piece of paper). Some might not have the faintest clue what I’m even going on about and will reach for Google to try to make sense of it all. Or perhaps think I’m even more crackers than I always have been and will wander off for a cup of tea, scratching their heads as they go!!!

However, for me, this is huge. The biggest thing that has ever happened to me. No question. It dwarfs getting married, getting my degree, burying my relatives, even discovering I can’t have children (I’m not talking here about whether things are good or bad, just about their magnitude in my life). This is the biggest. Is it good or bad? The answer at the moment is probably both, to some degree, although the question is much more complicated than that – and a discussion for a future post. In general, though, I believe this new knowledge will transform my life – it already has in many ways.

It has caused me massive swings of emotion over the last few months, from deep depression to relief and excitement, from severe anxiety to calm beautiful acceptance, and has meant that I’ve had vast amounts of new information to process and absorb. It’s still taking lots of energy. I’ve read over 20 books, hundreds of blog posts (one reason I’ve chosen to blog is that others might feel less alone by reading what I will write here), and lurked quietly on groups and pages on facebook, learning as much as I can. I’m probably still going to make mistakes with new language, recently learnt, and I expect I’ll look back on these early posts in a year or so and laugh at myself or cringe, but this blog is now part of the process too. Please forgive any errors while I’m still learning.

And as I am still learning, I’m not really in a position to start answering lots of questions yet – I still have more questions myself than I have answers, and my ability to respond to comments and questions might be somewhat limited for some time to come. My brain is still massively overloaded with new information and I absolutely need to learn everything at my pace, doing my own research, in my own way. That is really really important to me. I have now reached the stage where I can present the initial research and give my paper to conference, but taking questions from the floor will have to wait a while.

I have entered a world that, paradoxically, is completely new but also absolutely familiar to me. I will tell you as much as I can about it all in the weeks to come, but I’m not going to say exactly what it is yet. Let me just say that it has blown my mind, changed my life, and made sense of almost everything. If you already know what it is or have guessed, then don’t reveal it yet in case there are those who like a story. I’ll tell you very soon, I promise – after I’ve given you just a little bit of background in the next post.

I am still very much me. The same me. Much of my life will return to a normal, maybe not that different from the old one, once I have fully recovered from the seismic effects that the discovery is currently having on my brain, but I am learning a new way to live. A gentler, more forgiving way. A way that I hope will make life a bit easier and more suitable for me, now that I finally know what I am dealing with.