Loss and Recovery – Part One

All I want to do is sleep and sleep – everything else is just so unbearable . . .

Fibromyalgia

All I want to do is sleep and sleep – everything else is just unbearable . . .

I have written and spoken at length about my struggle with mental illness (see About Me), mainly because most of my books centre around this topic. However, I’ve also been battling another illness, this time a physical one, that’s had a similarly devastating effect and in many ways, the two are closely entwined. Fibromyalgia, a type of ME or chronic fatigue syndrome, has been part of my life for a long time now and has co-existed with my depression since my early twenties, although I’ve only been able to actually give it a name over the last five years. The two have fed off each other – depression almost always sparks a fibromyalgia attack and vice-versa.

It is hard not to get circumstantially depressed when your body limits you in so many ways that you have to rely on others for help and can’t be fully independent anymore. I don’t want to get too technical about fibromyalgia, as that is not the main point of this post, but if it interests anyone I can write a seperate post about it in more detail. However, I will give you some information about this disease, and then try to explain the impact it’s had, and still has, on my life.

According to the National Fibromyalgia Association, 3-6% of the world’s population has fibromyalgia syndrome. That’s somewhere around 300 million people worldwide who suffer from the condition. The NHS believes that 2-4.5% of people in the UK may have fibromyalgia syndrome – between 1.2 million and 2.8 million people. 75-90% of people with fibromyalgia syndrome are women.

Firstly, no two days are the same. I can have a good day, which means that I’ll be awake and out of bed for about 8 hours (good quality sleep is impossible with fibro so I’m usually in bed for about 14 hours, waking every hour, and often awake for long periods of time). During that time awake I’ll do far less than the average person, and if you’ve ever read or heard of the Spoons story in connection with Lyme Disease, then it absolutely explains this illness too. If I manage to have a shower, I’ll need to lie down and rest for about an hour or so straight after, as I’ll be too exhausted to do anything else. I’ll be able to take the dog for a short walk and maybe manage to do some work for a couple of hours after. Or, instead of working, I might be able to meet up with friends for a couple of hours instead. But then that will be it. I might still be awake, but I will be lying down on my bed or the couch, watching something on Netflix, or if I’m really tired, something mindlessly funny on TV. I might be able to read for an hour before bed. I might be able to pick up a few things from the shop and play with Misha on the carpet for half an hour. But that’s basically a good day. For medium days, I might be able to walk Misha but then nothing else, not even read. Or someone else might take Misha out for me and I’ll be able to give just one lesson (I also work as an English tutor), then lie down again straight after. On bad or very bad days, it’s a struggle to get down the corridor to the bathroom. Getting up and dressed is out of the question. I hurt all over. I can’t regulate my body temperature so I’ll either be far too hot or shivering with cold. I have a terrible headache and often stomach ache too – I have sharp pains in certain ‘pressure points’ all over my body. My skin seems to burn. Even rolling over in bed is too painful and too difficult – I don’t have the energy for it or anything else. I can’t even have a conversation. I can’t watch TV or listen to audiobooks – I feel too unwell to bear the sound of either. All I want to do is sleep and sleep – everything else is just unbearable. It is almost exactly like having really bad flu. Except instead of it happening once a year or less, my bad flu happens every couple of weeks and often more. But it wasn’t always like this . . .

I was about 22 and had been going out with my boyfriend for six months. I knew it wasn’t really working and this wasn’t the right relationship for me, even though he was a really good, kind person. We had a difficult breakup and at the end of it, he developed Glandular Fever. He was so unwell with it, he even had to be hospitalised briefly. For him it was very severe, but ended very quickly – about a month in total. He told me to get myself tested, which of course I did. GF is often referred to as ‘the kissing disease’ (‘mono’ in the US) because it’s so easily transferred through saliva and usually affects people in their late teens and early twenties – university students are often its victims. So I was really relieved and quite surprised when I rang through for my results a week later and was told that I was clear. What I didn’t know, however, was that the person on the other end of the line had made a mistake. You have to be very careful to rest and recuperate and build yourself back up slowly with the help of a good diet and extra vitamins, when you have GF. Most people know that. What they don’t know, however, is that if you ignore the signs of GF, don’t slow down or worse, go through increasing amounts of stress, not only do you not recuperate but you go on to develop something much more sinister: as in my case, fibromyalgia, or GF led fibromyalgia, which has a much lower recovery rate of 15%.

I struggled for years. My life became a nightmare. I didn’t know what was wrong with me. The doctors didn’t know what was wrong with me. I went for test after test. I decided it had to be all in my head since nothing was coming back positive. One private doctor I saw over a few months told me I was describing the exact symptoms of fibromyalgia. He was adamant that fibro was the cause. Unfortunately, there is no treatment for it, no cure and I couldn’t afford to keep seeing him. Subsequent doctors claimed that this illness, at the time referred to as Yuppie Flu, didn’t exist. I was appalled. I felt like I was dying and now I was being told that my illness was a fake one invented by malingerers! By now I was working full-time as a classroom teacher for 5-6 year olds and, unlike the other teachers, I wasn’t just exhausted. I was constantly ill. I spent weekends, half terms and holidays in bed. I didn’t even have the energy to make myself a meal in the evenings. I was taking more and more time off work. And then finally, in a desperate attempt to hold on to my job, I started taking painkillers. At first a normal dose, but I was taking it every day. It helped a lot. Then gradually the effect wore off. So I took more. And more and more and more. My addiction to OTC painkillers wiped out most of my 30s. By the time they were ending and Hurt was published, I was taking three entire packets a day. I’d tried to come off them a hundred times but it was too hard. The withdrawal effects, on top of the flare ups of my chronic illness, were just too ghastly to endure. I finally ended up in rehab and got off the stuff but it was then that the true nature of my physical illness, no longer masked by pills, became apparent. I was also at the time, more suicidal than I’d ever been in my life. So, at the same psychiatric hospital, I finally agreed to try the world of psychiatry’s very last resort – ECT (electroconvulsive therapy or electroshock therapy). And so in April 2014, five years ago now, I underwent 8 courses of ECT – given a general anaesthetic and then fed electricity into my brain through wires attached to my head while I convulsed.

The ECT didn’t work. It left me with some major short-term memory problems and word retrieval problems (the worst thing for a writer!), but what really affected me were the general anaesthetics. Although I didn’t know it at the time, a general anaesthetic often causes a major relapse, or worsening of symptoms, in people who suffer from illnesses that fall beneath the chronic-fatigue umbrella term. I now know so many people with CF who, after having an operation with general anaesthetic, spent more time in bed recovering from the effect the general anaesthetic had on their CF symptoms than from the operation itself. And that’s after just one operation. I’d had the equivalent of eight.

I spent a year in bed. Thankfully, my psychiatrist had just returned from sabbatical after taking a year off to care for her two teenage daughters. They were so unwell that they’d had to drop out of school, resort to homeschooling and at times could barely walk. After a barrage of different tests, they had been diagnosed as suffering from chronic fatigue syndrome. And my psychiatrist had come back from sabbatical after researching her daughters’ disease for a year, now almost an expert on the condition. Despite feeling painfully sorry for those two young girls (thankfully now doing much better), it was one of the best coincidences of my life. My brilliant psychiatrist not only became the doctor of my mind but of my body too. Thank God, as there were, and still are, medical professionals out there who refused to believe that these chronic fatigue illnesses even exist.

Despite there being thousands of patients in the UK, like the ones visited by my psychiatrist during her research, who live permanently bedbound, often unable to even lift their own head from the pillow, diagnosed with no other illness than the one I suffer from, there are still some medical professionals and large portions of the general public who refuse to believe it is a genuine illness, or that it even exists. Because there is, as yet, no clear test to prove that a patient suffers from CF, ME or Fibro, many people would rather believe that all those suffering from it are malingerers, choosing to live half lives or to stay in bed the entire time. It is such a cruel, shocking, stupid and uncaring reaction – but it’s one that has a major impact on us sufferers – even at times costing us funding needed into proper research. I have had days when I didn’t even have the strength to roll over in bed. Or have sat stuck on the floor, totally incapable of getting to my feet. To be unable to live and do things that others take for granted and that you used to, too, and then be told that you’re just malingering or that it’s ‘all in your mind’ is something I find and will always find impossible to accept.

Depression and Me

The prospect of death was always terrifying but when you are that depressed, you see it as the only way out . . .

The prospect of death was always terrifying but when you are that depressed, you see it as the only way out.

I was inspired to write books about mental illness because it is something I have experienced first hand, something I have grown up with, something which came very close to destroying me. As a child I hated school and spent a lot of time writing stories when I should have been listening in class. Although I didn’t realise I was depressed back then, I found the daily routine stifling and wanted to spend more and more time on my own. By the time I reached secondary school I would lock myself in the toilets at break time just to get away from people. I felt increasingly alienated from my friends around me and out of step with the rest of my peers.

I knew there was something wrong but I didn’t know what it was and I blamed myself for not being more like the others. Finally, things reached breaking point, and I quit school completely at the age of fourteen and did my GCSEs and A levels by distance learning. It was around this time that I started to write – books about mental illness and suicide – a reflection of my deeply troubled state of mind. I studied French Literature at King’s College London and although I found the freedom of university easier to cope with than school, I was still desperately unhappy. My depression peaked in my final year and, just after graduating, I found myself walking around campus, looking up at the tallest buildings, trying to work out which one would guarantee me a fatal fall. In the end I chickened out, wrote a suicide note, and instead went to bed with several bin liners tied over my head which slipped off during the night, sparing me my life.

However it wasn’t until I was twenty that I finally made the link between the horror of my existence and the term depression. I remember wanting to die for a very long time. In fact I think that wanting to die is the wrong expression. The prospect of death was always terrifying and completely final. But when you are so depressed that life is completely and utterly intolerable, you see it as the only way out. It’s like being stuck between a rock and a hard place – you’re terrified of dying, of never seeing your family again, of destroying your family as well as yourself, of the pain, of the terrible irreversibility of it all – but you know you cannot go on living. Being alive is simply, totally and absolutely unbearable and you get to the point where you would do anything, and I mean anything to make it go away.

I finally found the courage to speak out about my depression in my twenties and went to seek help. The first doctor I saw to told me I was not depressed at all. Like most severely depressed people I had become expert at hiding my emotions and so the doctor told me that there was no way a depressed person could smile and chat and be so eloquent. Instead of offering me help, he offered me a job! Being told my depression was a figment of my imagination was like a fist in the stomach. But I went on to see other doctors and was referred to counsellors, psychologists and psychiatrists. Over the last fifteen years I have tried many different types of therapy and more than twenty different anti-depressants, many in combination, as well as anti-psychotics and mood-stabilisers. In 2014, I even agreed to undergo ECT (electroconvulsive therapy). Some medication I’ve had to quit due to intolerable side-effects, some have made my condition worse, many have had no effect whatsoever. Occasionally a drug has helped for a while before wearing off. However, my official diagnosis is ‘severe refractory depression with bipolar tendencies’ which is rare. Most mood disorders respond well to drug and/or therapy.

Although the illness is always there, these days I am so much better than I’ve ever been at any other period during my life (see my other post Loss and Recovery). On the whole, writing about my experiences through fictional characters has proved an amazingly cathartic experience. It has also allowed me to share what I have been through with others. Even though all my books are fictional, I draw heavily on my own experiences and this has definitely helped me make my writing more real. Whilst in the throes of depression, I often force myself to sit down at my computer and write down exactly what I’m feeling, the exact thoughts that are going through my mind. Later, I try to incorporate those sections into the book I’m writing. Since my very first book came out, so many people have contacted me to say ‘I went through that’ or ‘it was like reading a book about myself.’ This allows me to talk to them about my own struggle with clinical depression and for readers to tell me about theirs. It has been an absolute revelation to discover there are so many people who suffer or have suffered from some form of mental health problem and it has been so reassuring to realise that not only am I not alone, but I am actually in extremely good company! Mental illness is alienating by definition. Breaking out of that bubble and making contact with other sufferers is an enormous and crucial first step.

It has been a long road, shuffled from doctor to doctor and from therapist to therapist and trying just about every medication in the book. However, I still hold out good hope that I will eventually be free of this illness: advances in the treatment of mental health conditions are being made all the time. Nowadays, the vast majority of people who seek help get better very quickly and there really is a lot of help available out there if you have the courage to speak out.

Originally published in SANE’s magazine, Your Voice

Mental illness is still a taboo subject, however it is a biologically-based brain disorder which cannot be overcome through willpower and is not related to a person’s character or intelligence. The simple fact is that mental illness is rapidly on the increase and is fast becoming a massive problem in today’s high-pressured society. A staggering one in four people suffers from some kind of mental illness, 20% of all deaths of young people are by suicide, and suicide is the most common form of death in men under 35. In this country alone, there are estimated to be 24 000 cases of attempted suicide by adolescents each year, which is one attempt every 20 minutes. If you think you or someone you know may be suffering from depression, there are many sources of help available. Depression is an illness, and like most illnesses it can be treated and cured. But you really do have to speak out. This is the only way to get help. If you often feel unhappy, you need to speak to an adult. You could speak to a parent, a guardian, a foster parent, a teacher, a friend’s parent, a doctor, a school nurse, an adult you trust, or contact one of the organisations listed here. Millions of people in the UK and all over the world suffer from a mental health problem. You are not alone.

Welcome to this Blog

This is a new path I’ve decided to take, and I hope you’ll be willing to come along with me . . .

This is a new path I’ve decided to take, and I hope you’ll be willing to come along with me . . .

I’ve been thinking about starting a blog for quite some time now – partly because in the past, I always kept in touch with my readers via Facebook, but now that I hardly use it anymore, I need to find a new way. Partly too because I don’t want all my writing to always be restricted to the confines of a novel. And finally because I thought it might be interesting for readers, writing enthusiasts and others to find out in greater detail all that goes into planning, writing and publishing one’s own book, as well as how all that fits into an author’s general life. I am also very aware that due to illness and good old writer’s block, it’s now been a whole six years since I’ve had a new book published, and I feel I owe my readers something else while they wait, as well as regular updates on how that latest book is progressing.

I do feel guilty towards my readers at times. At least towards the very faithful ones who have read all of my published books and who have patiently been waiting for me to give them a seventh since my last book was published in 2013. They are the ones who mean so much to me, since they have been sending me messages through my website and Facebook account for years, and hung on to me as an online friend even when my posts went from regular writing updates and snippets from my seventh book, to just the occasional post about my puppy, Misha. Especially when many of you may have absolutely no interest in dogs at all. But even if you haven’t continued to read my posts there, perhaps you have still continued to hope that I will someday write another book, and for that I am extremely grateful. Grateful, too, for those who haven’t read any of my books but have discovered me online nonetheless, perhaps through a shared interest in writing or creating, and have become my friends, even though we may have never met. In starting up this blog it’s for you guys that I write, because you have supported me over the years and many of you who’ve read my books have taken the trouble to write to me. And I write here because I also have things to say which don’t always fall neatly into the structure of a novel and also because, in a strange way, I feel as if I owe it to you.

However, I should underline the fact that this blog is not here to replace my novels. A blog can’t do that, anyway. It’s here to keep those interested up-to-date on my writing. It’s also in order to ask you questions, so that you can help me with my writing. I’m not only going to be posting about my work-in-progress, but if that’s all you’re interested in then that’s absolutely fine. Just do please subscribe to this blog all the same and feel free to delete the posts you are not interested in straight out of your inbox when they arrive. I won’t be able to let you know on Facebook every time I post here, as those of you who are still following me closely know that I’ve completely fallen out of love with FB, that I hate all the ads and the way the newsfeed gets so cluttered. So in a way, this blog is to replace how active I used to be on FB too. I promise not to flood anyone’s inbox, though. I don’t know yet precisely what my upload rhythm will be, but I will work it out very soon and let you know – once or twice a week should suffice. In addition, as most of my posts will be non-fiction, it shouldn’t be too problematic for non-English speakers to use Google Translate (see bottom of the sidebar). I know I have many readers from abroad who only know me from Forbidden in translation (11 languages now – yay!) and you have been so good and so patient with me that I really want you to be able to access this blog too. Feel free to write comments in your own language and I will just use the translation tool on my side to understand and respond.

So what is this blog actually going to be about? Well, it’s an important question but not one I can give a precise answer to yet. As you can see, I’ve already written three posts in three different categories, but there are going to be many more categories than the ones you see now. Writing updates about Book 7 are a promise and in my first post in that category, I shall attempt to explain why I haven’t published anything since 2013. It’s for more complicated reasons than you might think. A lot of things in that area of my life have changed, making it far, far harder for me just to get my work published now. But I’ve also not tried to get anything published since 2013, mainly because of health problems. But I’ll explain it all, I promise, and will give you regular writing updates as well as excerpts from my current book. I will also be asking you for some help with the plotlines and even the subject matters that I write about. I think it’s going to be fun! However, the reason I can’t give you a more precise answer to what the blog is going to be about is that, for the moment, this is a new path I’ve decided to take, and I hope you’ll be willing to come along with me. I will be guided by your interests as well as my own. I will let you tell me what you would like to read about and I will write about any topic that takes my fancy! So yes, you can expect to find quite a few puppy tips and dog stories – my 2 y.o pup Misha is the only reason I’m still here after some of the mental and physical health hurdles I’ve had to endure in the last few years – so he is such a huge part of my life that it’s impossible to separate the two. Eventually I may even try writing some fresh, new fiction just for this community – short stories without too much plot which are mainly to help you get into a better head space, a more relaxed and calm state of mind. I will also be writing about mental health in general and will share everything that has helped me in my recovery; I will welcome other people’s stories as well as any questions.

Since my own terrifying journey through depression began, when I was only seventeen, I have finally reached a place where I am more stable and recovered just about enough to be able to look back and discuss the subject with more objectivity. Although it still lives with me, it’s not such a live fuse in my life anymore, no longer waiting in the shadows to be ignited by some unfortunate incident or a torrent of negative thoughts. I don’t know if that’s due to wisdom come with age, or the many different pills I still have to take, or just the fact that I’ve learned to be more observant of the very simple things in life that we enjoy. But the last couple of years have been the most peaceful and stable I’ve had in my life so far. I’m not cured of course, I am still mildly depressed most of the time and I struggle with many things people usually take for granted. I still have to be very careful about the situations I put myself in, about what I read and watch, about my thought patterns, about getting enough rest and sleep. But my simple daily routine with Misha, which forces me to be out in nature for a couple of hours every single day and gives me someone other than myself to focus on, has somehow calmed my thoughts and brought me back to a much slower pace of life – one where there is the room and time to notice and be grateful for all the small things which we so often take for granted. And a lot of these things are ones that I strongly believe would be helpful to everyone – or at least everyone who leads a life that is not quite perfect, or who finds themselves getting down, stressed or overwhelmed from time to time. So that is what this blog will be about too.

So yes, I’m better. And looking forward to going on this new journey with you.