Loss and Recovery – Part Two

The only problem with getting a dog was I didn’t like dogs. I didn’t particularly like any animals . . .

Saved by a Dog

The only problem with getting a dog was I didn’t like dogs. I didn’t particularly like any animals …

So there I was, at the end of my thirties – an invalid in bed, suffering from acute fibromyalgia, an ‘invisible’ disease that had gone unrecognised and disbelieved since my early twenties. I’d begun a career as an author – but the illness had caused me to renege on my latest contract and I was too unwell to write anyway. After leaving class teaching due to my health, I’d built up a name for myself as a tutor but now too ill to teach, I’d had to let my pupils go. I’d more or less lost the whole of my thirties to this disease, as well as to the painkiller addiction I’d developed as a result of trying to cope without help. Or even belief. And now that they did believe me, it just felt far, far too late. I just didn’t have it in me to fight anymore. I had come off the painkillers, out of rehab and through eight rounds of ECT, only to find myself in a world of exhaustion and pain – far, far worse than it had ever been before. I had absolutely no motivation to help myself, even though I knew I was going to end up an invalid for life if I didn’t. But all I wanted was to die. I was so sick of it all and had no resilience left to begin this new battle, which was clear I’d most likely be fighting till the end of my days. I just really, really didn’t want to live – especially not like this. So I contacted Dignitas. I spoke about it openly to my family and friends. This was, for a good amount of time, my one and only wish. It wasn’t fair of people to ask me to fight yet another illness in order to lead a life that I didn’t want back anyway. Dignitas accepted patients who suffered from chronic and debilitating depression that hadn’t responded to any medication or therapy. They also accepted patients who had painful chronic illnesses that were unlikely to ever get better, even if they weren’t terminal. Which made me a perfect candidate. I actually felt a tiny bit better once I’d found a sure-fire way out. There would be no mistakes, no unnecessary suffering, no botched jobs to further disable me and burden my family with, or to leave me in a coma for years. At last, I was in control. I had found a way to get rid of both diseases, even though it would cost me my life. But at least I wouldn’t have to suffer anymore. I’d really had enough. Well, at least physically, I’d never had much appetite for life anyway. Ill, there was no way I had the motivation to fight to get to get physically better, just so depression could be the one to run my life. So I spent a further two months just lying in bed. There was no point in getting up or doing anything or seeing anyone, even though I was finally well enough to. Now that my mind was set, I would simply wait to save enough money from disability benefits to be able to travel to Switzerland and pay for my final treatment.

Spring was round the corner but I was still in bed in my darkened room. Despite my best efforts, it was impossible to stay asleep continuously and the hours spent lying awake were torturous. I couldn’t even bear watching TV. I would just stare at the darkness and think about death. I knew that the only alternative to that was to start walking – just to the end of my street – and then build that up by a minute or so each week. But I couldn’t think of anything more frustrating or boring, except perhaps lying here in my own self-made purgatory. Everyone was telling me the same thing – I had to get up and start moving, it was the only cure for muscle atrophy and the only thing that was going to keep me out of a wheelchair. But there was just no way I could force myself to do that everyday, even if I did somehow find the strength to give life another try. Depression had swallowed every iota of motivation and I hadn’t had much to begin with. I might have managed a few days, even a week if I chose to fight, but I knew I’d never be able to do it every single day. Lying in bed for so long did, however, give me lots of time for thinking. After a while it even begin interesting to play the what if game, just to have something to think about. So, what if I really had no choice other than to walk every day? What if someone forced me to do it? Realistically though, nobody was going to come with me and force me to do it, even if they thought they could succeed. At least certainly not every day. Other people’s lives were carrying on, despite mine having stalled for good. And it was my life. If I was completely determined to waste it and throw it away, nobody could stop me.

Although … the what ifs didn’t stop coming. There were some people who really did have to go out and walk, every single day, usually for many years, often for most of their lives. Normal people, living all around me; people who weren’t trying to recover from muscle atrophy or some horrid illness. And if they felt tired, or became unwell, they usually still had to do it, and often more than once a day … People who had dogs. People who had dogs had to walk. It was that simple. You couldn’t have a dog and not take it out for daily, or twice-daily walks. Not to do so would be unimaginably cruel. The only problem with that idea was I didn’t even like dogs. I didn’t particularly like any animals. I’d adored them as a child, but when, aged eleven, I’d been given a baby rabbit, I’d instantly fallen in love with only to have to watch it die painfully the very next day. I’d been heartbroken and deeply shocked. Even now, the memory of seeing something so sweet and so young, die such a painful death, haunts me. It had been separated from its mother too young, given lettuce to eat when it should have still been suckling on its mother’s milk. The vet could do nothing. He should have put the poor rabbit down rather than send us away only to have it die with us on the way home. It was, I now realise, a traumatising event in my childhood and it wasn’t the only one involving animals I’d experienced back then. Ever since, animals had come to represent pain, loss and death to me. To such an extent that I’d become really squeamish about them and wanted nothing to do with them. I felt slightly better around dogs because they seemed stronger than most domesticated pets but I was always worried they might suddenly turn aggressive and become dangerous. It had always felt safer to leave the animals to the animal lovers and experts. Getting a dog was a ridiculous thought, anyway. Almost ludicrous. Who got a dog because they were too lazy to go out for a walk? I was the last person I could imagine with a dog. Anyone who knew me would have laughed at the idea. For a start, you need to adore animals, or at least dogs, in order to own one, otherwise what was the point? The idea stayed with me though. Looking back, I realise now that I was searching hard. Searching for a reason to stay alive. By now, I clearly didn’t want to die anymore, at least not unless I really could find no alternative to getting better again. Maybe I wasn’t completely and totally run down by life. But I was very afraid. Afraid of staying sick, of never recovering. Afraid of more pain to come.

But still, I couldn’t be serious about the dog thing. It was just to pass the time, I told myself as I picked up my mobile from my bedside table and started familiarising myself with the different breeds. Just a silly distraction. However, when I came to a picture of a Cavalier King Charles Spaniel, the breed my mother had grown up with, I felt something. A slight thaw. As a child, my mother had been given a Cavalier as a reward for passing the 11+ and had named her Plus. There were still photos of her around the family home and my mother always spoke of her with such affection, I’d felt like I’d known her. I tried comparing her breed to others in the list but everything in her temperament fit what I was looking for. Great with children – that was a prerequisite as, if I ever got well enough to tutor again, I’d have primary aged pupils coming regularly to my home. And every Blenheim (tan and white) Cavalier I saw online looked so familiar. As I had nothing better to do, I thought I might as well read articles on how to get a dog and what to expect; how to look after, train and care for them. Might be useful for some novel I might someday write … But something took hold. As the days melted into nights and nights faded back to days, I slept sporadically, ate snacks and read and read, on my mobile, still in bed. At least it made the time go faster. When, for fun, I started scrolling through ads for Cavalier puppies, I immediately felt myself melt. But everyone went gooey over puppies, right? And dogs didn’t stay puppies for very long. But even the adults were adorable. They had such bright, intelligent eyes and kind, smiley faces. They looked quite different from most other breeds – almost a species unto their own. In videos those tails just never stopped wagging; they were quite overwhelmingly friendly; they seemed delighted by all other dogs and all humans and everything in the world around them. Their temperaments were the exact opposite of mine in every imaginable way. There was something familiar, something comforting and just so special about them. And they held quite a singular power over me – they just couldn’t stop making be smile … It was a while before it really hit me. But then it did, hard. Maybe getting a dog wasn’t a completely ridiculous idea. Maybe, if I fell in love with a dog, I’d not only be forced to go for walks every day, but I might find a new reason to live.

Barely a month later, I was on a train. Dazed by the spring sunshine, the noise of the passengers, the speed of the countryside flashing past, I sat beside the window for the entire three-hour journey, clutching a canvas puppy travel bag on my lap with a soft blanket, a few toys and a teddy inside. In my rucksack was a heated pad, another blanket, training pads, a bowl and drinking bottle, and some treats. I was headed to Wolverhampton to collect my new eight-week old puppy – an absolutely tiny little Blenheim boy I’d decided to call Misha, the Russian diminutive of Mikhail – or Michael. I’d been to see him once before when he was only 5 weeks old and he’d been a warm, soft, sleepy little bundle of tan and white fur, the size of a baby rabbit that fit neatly into the palm of my hand. But I’d been kept abreast of changes via photos and videos and I knew he was now almost three times the size – although still no bigger than my foot – and that when he played with his toys or his siblings, his tiny tail wagged so fast that it became a blur. I was still very weak and dressed in dark winter clothes as I hadn’t realised it was so warm already and my summer clothes were still packed away. Everything around me felt magnified and I was shell-shocked at the brightness, noise and hustle of life around me. Not only did this day mark one of my few outings since my hospitalisation nearly two years ago, it was also the very start of my recovery. Fibromyalgia might be with me for the rest of my days but my muscle atrophy, which still made climbing a few steps a shaky experience, or standing up for more than a few minutes almost impossible, was being reversed from this day onwards. Lying in bed all day would be a thing of the past and going for walk – not too far at first – would become a big part of my daily routine. Waiting for us back home was everything a puppy could need and more – I had used the interminable three week wait since I’d first chosen Misha to read and watch every dog book and documentary I could lay my hands on, and to shop online for absolutely everything my new puppy might need. When the train finally pulled into Wolverhampton, I could hardly breathe. Most importantly of all, this day marked the most exciting, most anticipated day of my entire life – way above my wedding day; way above the first time I walked in, as newly qualified teacher, to a classroom full of 5-year-olds; way above – something I’d thought impossible till now – even way above the day I first held my first published novel in my hands. This day, I knew, would be utterly life-changing. Nothing would never be the same again …

And I was going to make damn sure that my boy had a good life – the very best I could give him. My purpose was suddenly crystal clear. For the first time in seemingly years, I had a reason to be alive. The depression would come back of course, in stubborn fits and spurts, and there would be some tough physical and mental challenges during the first year of my puppy’s life. I wouldn’t particularly recommend going from two years in bed to buying a puppy! The start was intense. Although I had fallen deeply in love, my drained and weakened body struggled desperately to keep up with the boundless energy of a small, very curious and terrifically active puppy. There would be times I’d think I could no longer manage. But somehow we always pulled through. And it has been so, so worth it. Those deadly, incapacitating and life-threatening bouts of suicidal depression gradually left me, my body grew stronger by the day till my walks to the end of the street gradually increased to rambles in the park or countryside.

He arrived during my deepest, darkest hours, when death felt like the only escape from a world without kindness, or mercy. Like a little burst of magic, he rushed in and restored love, happiness and laughter to my walled-in life and thoroughly iced heart. I no longer live for me and for what I want out of life but for Misha, for whatever he needs, desires and everything I think would make him happy. It’s a much, much simpler life. A much healthier life too. And a much easier way to be. There is no ‘I‘ in my life anymore – there is only ‘we‘.

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.

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.