In 2004 everything was going so well. I had an enjoyable, varied and fulfilling job in a day centre, supporting people with mental health problems. It was easily the best job I’d ever had, and life had been even better since meeting my partner Angie three years earlier. We had recently moved from
London to Sussex, a beautiful county on the south coast of England, and loved our new home close to the sea and the beautiful South Downs.
One morning I woke up with a pain in my groin which I’d never felt before. It wasn’t severe, but I was a little worried, and the pain and my anxiety about it got gradually worse over the next couple of weeks. At first I wondered if it was a pulled muscle or even just constipation. But one night I went into Accident and Emergency feeling so anxious and so desperate to have the pain diagnosed that they decided to keep me in hospital. I stayed for two nights, and at first this reassurance calmed me down, but by the second night I was pacing up and down the ward in tears. I went home the day after, still without any definite diagnosis of the pain. But in a way, what disturbed me most was the dreadful mental state I got into while I was in hospital. Why on earth had I reacted in such a distressed way? In therapy, six years later, my therapist and I realised that this heightened state of anxiety probably resulted as a repeat of three frightening hospital experiences as a very small child: the first very soon after birth, and the other two being separate surgeries for hernia repair.
Back at home the pain continued, and after a few more weeks I asked my doctor if he would prescribe anti-depressants, as I was still distressed and very worried. Even at the worst times of my life I’d never considered this option before, but my doctor agreed and prescribed Citalopram. I didn’t know that a common temporary side-effect of this drug is severe anxiety, sometimes even prompting suicidal feelings. It can make you feel worse before you feel better.
The next few weeks were my first ever experience of severe anxiety. I’d wake up every morning with my heart racing and pains in my chest. I felt as if I was dying. These panic attacks would gradually subside towards the end of the morning, leaving me by late afternoon feeling calmer but completely exhausted. All I could do was lie on the sofa, half-watching TV and not really able to appreciate
Wimbledon (watching tennis is one of my passions). I’ll always associate Maria Sharapova’s endearing winning of the title at the age of seventeen with my nightmarish experience at that time.
In the evenings I felt fine. The exhaustion would wear off, leaving a strange feeling of subdued calm. “Why can’t I feel like this the rest of the day?” I thought every evening. But you can’t will these things. Anxiety is impossible to fight, I’ve learned – you can only try to accept and go with it.
After about a month these frightening side effects had worn off, although I was still concerned and sometimes distressed by the physical pain. The medication had ‘kicked in’, and for the next four years I felt nothing like that panic again. So now I turned my attention to the pain, in what I hoped was now a constructive way. One personality trait that’s often been in my favour is that, whenever something distresses or frightens me, I turn to whatever sources I can for help. I’ve always felt able to use helplines for emotional support. But I also desperately wanted to have the pain diagnosed. After several scans and visits to urologists and a physiotherapist, I was referred to my local pain management clinic where the consultant told me that, other causes having been ruled out and considering the duration of the pain (it had now been about six months), I seemed to have some form of neuropathic (nerve) pain. She couldn’t tell me the cause and there was no ‘cure’; but medication and self-management could ease it somewhat. I asked her if the hernia repairs I’d had as a small child could be related, but she was skeptical because of the long time interval that had elapsed. Far be it from me to think I know better than a consultant in pain management! - but I’ve since learned that there is growing evidence for the onset of neuropathic pain decades after surgery in early childhood. There may be both physiological and psychological reasons for this, but the phenomenon is certainly not uncommon, as the latest research is showing. One health professional even asked me if I’d had surgery in my groin as a child, and wasn’t at all surprised when I told her!
Even so, no doctor has yet been able to give me a definite cause for the pain, so any ideas about my childhood surgeries are, I guess, still speculative. At the time I was diagnosed – rather vaguely, with ‘some kind of neuropathy’ - the idea of a pain condition with no apparent cause was new and quite a surprise to me, but unfortunately it is very common indeed. Millions of people around the world suffer this kind of ‘invisible’ pain, and for millions of us it is often severe, even with all the palliative effect of 21st Century medicine. For a high proportion of sufferers, the pain is sometimes so bad that they want to die, although thankfully it hasn’t been that bad in my own case. On a one to ten scale (with ten being the worst pain I’ve experienced, not the worst a human being can suffer), my pain sometimes reaches about eight during a flare-up, but is usually more like a four. It’s the flare-ups that are the problem. On a day-to-day basis, the pain isn’t usually at all bad, but what’s disabling is the constant need to pace myself and have frequent rests, in order to prevent it from flaring up and becoming distressing and debilitating indeed. So the pain, without being terribly severe for most of the time, has completely changed my life.
Finding oneself in this situation, after more than thirty-five years of ‘normal’ health problems which can be treated or just get better by themselves, is not easy to deal with. Managing the pain was something I needed help with straight away, and even before the diagnosis I had been searching the internet for sources of support which I knew must be out there.
So I read books, and scoured the web for self-help resources. Over time, I learned about deep relaxation through correct breathing, muscle relaxation and visualization. I also learned how to pace my activities, gradually increasing what I could still do physically without risking big increases in pain. This, I found, was a difficult skill and I still don’t always get it right today. But practicing it does give me far more control over my pain levels than would be the case if I constantly tried to do too much, which tends to result in the ‘boom and bust’ cycle that actually leads to less activity and a lot more physical and emotional distress.
I found support from an organisation called Pain Concern, which runs an informative and encouraging helpline. I had regular follow up appointments at the pain management clinic, where the consultant helped me to work out the types and doses of medication which were most helpful. And I took part in two courses for self-management of long-term health conditions, which I found most helpful even though much was similar to what I’d already learned. Learning these skills was definitely a struggle at first, and I had many times when I felt I was drowning in pain and that it was all too much for me. But in spite of often taking steps backward after going forward, I was beginning to learn how to manage my condition.
One of the things I found most difficult – and still do, sometimes – was learning to keep my thoughts positive during pain flare-ups. The feeling of ‘drowning’, and my depressed feelings whenever I had to restrict my activities even more than usual, were hard to deal with especially when I was at home during the day. I would often make use of helplines at these times. It was also a difficult art to pace my activities. Standing, sitting upright, and walking were all painful if continued for more than a few minutes at a time, and I had to rest in a reclining position or lying down in between. It was immensely frustrating, having all my life taken these most basic physical activities for granted. So it was hard not to slip into the common trap of doing too much, then as a result being in so much pain that I could hardly do anything at all. After seven years of practice, I find this difficult even now. And I still have to rest in that reclining chair on a frequent basis through the day – and that means real rest, for my whole body. I can watch TV or listen to music, but not do anything physical, even typing on a laptop. It’s a terrible temptation to stay active if there’s something I want to get done, but frequent resting and practicing deep relaxation is essential if I’m to prevent really difficult levels of pain. It’s the main reason I still can’t work; after all, what job would allow someone to rest for half an hour after every fifteen minutes of work?
Another difficulty was the character of the pain itself. That may seem a strange thing to say, but it’s hard to explain to other people, even health professionals, what the pain is like when the sensations vary so much. It’s not just the intensity but the quality: everything from a dull ache to pin pricks of pain to a more severe burning pain. Sometimes it reaches down into my thighs – which is one reason walking can be a problem – or higher up in my abdomen. Perhaps it’s a bit like post-operative pain that doesn’t go away (another connection with my childhood surgeries), but that’s difficult to say because I can’t remember what it felt like. And very often, an activity such as sitting or walking doesn’t cause much pain at the time; it’s later on, after doing too much consistently, that a flare-up occurs and becomes incapacitating. It rarely affects the mechanics of walking, for instance. I don’t have a limp, or need a stick or a wheelchair. As a result it’s pretty much an invisible condition, like so many other forms of pain - and illnesses too, such as Chronic Fatigue Syndrome. In 2007 I had to have a medical assessment to determine if I was able to work, and as a result I was declared fit (!) and my social security was stopped. I appealed, and after facing a tribunal consisting of a doctor and a lawyer, and given space to explain in a much more paced and detailed way how my condition affects my life, I won my case. Thanks to the new government in
being even more hostile to the welfare state than the old one, I’ll probably have to go through the process again before long and am not looking forward to it. But the experience showed me that despite the difficulties of explaining my condition to others, it could be done with people who possess an expertise and experience in this kind of situation. Britain
Lay people can be a different matter. Just as CFS or ME is still sometimes seen as a kind of malingering, it seems difficult for people to believe in pain they can’t see. The same is true sometimes of anxiety and depression. Neighbours have made hurtful comments to Angie and me (“Michael’s not really ill, is he?”), which increased our sense of isolation and stress. Attitudes like these also tend to feed into the feelings of guilt and low self-esteem that sufferers commonly experience – and I’m no exception. A chronic condition is so much more than the illness itself. It’s all the extra suffering that the illness leads to: isolation, lack of purpose in life, guilt, loss of confidence, sometimes a diminished sex life, fears for the future, and a tendency to beat oneself up. As if being in constant pain wasn’t hard enough already!
Slowly however, it was all coming together. Not being able to work at least didn’t prevent me from being able to appreciate what I could do. My painting and photography, which had begun as a serious interest a few years earlier, was still possible if a bit more difficult than before. Although I couldn’t walk for miles, I could still enjoy being on the
South Downs, especially in summer when I could spread out a blanket and just soak up the sun and the sky. And as my walking and travelling ability slowly improved, I could eventually go on holiday with Angie, although I haven’t been able to go abroad yet. Special times like these, which also stimulated my passion for the stone circles and other prehistoric sites of , were appreciated all the more by both of us, because of the years spent at home before then. Ever so slowly, I began to feel that my life was returning, and by 2008 even imagined a time when I could get back to work. England
Before then, I had begun to get involved in other activities. I’ve become increasingly pacifist in recent years, and when the
US and Britain invaded Iraq in 2003, Angie and I took part in the massive demonstrations in that were reflected across the world. The onset of chronic pain reduced my concerns to a more personal level for a while, but in 2006 we decided to get involved again, and founded a new local peace group. We made friends through this, took part in protests and public awareness actions, wrote letters to the press, politicians and government officials, and I edited a regular email newsletter for our mailing list. It wasn’t exactly the most cheerful or fun activity to get involved in (astronomy, wildlife or art would have helped my mood a lot more), but I’d been feeling a deep loss of purpose in life after losing my job, and this was at least something I felt passionately about. I had found a cause and with it some new friends, which lessened my feelings of isolation. It was another aspect of life coming together for me once more. London
In spring 2008 it all came crashing down.
After three and a half years of taking anti-depressants, I felt I could probably manage without them now. I discussed it with my doctor, who was supportive but advised reducing the Citalopram very slowly, over several months. With his help I did so, and early in 2008 I was off the drug completely.
I certainly don’t want to frighten anyone who may already have anxiety, about the risks of coming off medication. Neither do I want to give the impression that chronic pain always leads to severe anxiety. So if you experience the kind of anxiety that frequently comes with having pain all the time, that doesn’t mean you’re going to have a full-scale breakdown like the one I experienced. Following basic relaxation, realistic thinking practices and many other self-help skills (meditation is a helpful one for me) can do a lot to alleviate both anxiety and pain and make the experience of severe anxiety very unlikely. As for coming off medication, when I look back I certainly don’t think it was a good idea to make the decision at that time, but that doesn’t mean it might not have been successful if I’d been looking after myself more in other ways. People do successfully withdraw even after years of taking the medication, but I realise now that it needs to be done at the right time, when we’re strong enough to cope without it and have our own support structures in place.
I felt fine at first, if a little ‘exposed’, as if my feelings had been muffled and were now in the open air. I was proud of myself, and very happy to be off at least one of my drugs. But six weeks after withdrawal I caught a cold and a bad cough, which got worse and led to laryngitis. I didn’t understand why, but it all made me very anxious, and not being able to speak for several days felt isolating and distressing. I knew that the cold would pass, but I just couldn’t help being frightened by the experience. Eventually I went back to my doctor, who agreed to restart the Citalopram. And after about a week of feeling dreadfully anxious even as the cold symptoms had subsided, suddenly I felt well again.
It was such a relief; this time the drug had taken only a short time to ‘kick in’. We had a short holiday coming up, in the beautiful
only about twenty-five miles away from home, so the recovery was well timed. But a few days before we left to go away, my anxiety returned and went sky high again. This time, recovery took a lot longer. Ashdown Forest
Several things were helping me cope with the experience. The first was diazepam (valium), which would give me several hours of blissful respite when I felt at my worst. The second was the loving support of my partner and friends. And the third was two crisis helplines, the second of which was run specifically for anxiety sufferers, called No Panic. Expressing my feelings in words, to a kind and sympathetic listener, always gives me relief, and I made full use of both helplines whenever I needed to (often several times a day).
I really wasn’t sure if the holiday was a good idea, but I knew Angie had been looking forward to it, and perhaps the change of scene would help me. On the car journey I dosed myself up with valium, but still felt awful. And that night in the hotel room was one of the worst nights of my life. Valium gave me a few hours of peaceful sleep, but I woke in the early hours and felt absolutely terrified. The feelings of panic were so strong and felt so continuous, that I feared I was going mad and might be sectioned in hospital. That was my greatest fear: that my life was collapsing around me, and all the joy I’d found in my life since meeting Angie would now be lost as I disappeared into the mental health system. Those thoughts kept going round and round in my head. I longed to sleep, and part of me didn’t much care if I didn’t wake up again.
As daylight came I said to Angie that I was terribly sorry, but I needed to go home. She accepted without protest. Arriving home in
Eastbourne we drove to our local branch of Samaritans, and the moment I sat down opposite the kindly volunteer, I broke into tears.
The Samaritans were good, but it’s hard to express how wonderful the No Panic volunteers were; how much they helped me over the next six months or so. Many of them (although not all) were extremely kind and empathetic. For much of the time I was in a state of near-despair, and I remember sobbing into the phone as I told a volunteer that I wasn’t sure if I could ever find the strength to come through this. I’ve never forgotten what she said to me then. “I think you will come through this”, she said, “and I think when you do you’ll realize just how much strength you really had.”
I wasn’t sure if she was right at the time, but I held onto her words as a source of hope and comfort. And looked back on them later, realizing she was right all along… (Hayley, if by any chance you’re reading this, THANK YOU!!!)
Thanks to No Panic I also learned about the physiology of anxiety, the importance of correct breathing, muscle relaxation and diet, and how to cope with frightening thoughts by developing more realistic thinking skills. I was already familiar with many of these skills, which are also a core part of pain management. I also joined a telephone recovery group (a sort of weekly conference call, with several other sufferers and a leader), which was immensely helpful and supportive and led to a couple of lasting friendships. Without No Panic I might still have got better eventually as I’m sure I’d have found other ways of gaining support and knowledge, but the organization made a huge difference and probably hastened my recovery a good deal.
And so, little by little, I got better. I spent much of 2008 on the sofa, and even once I’d begun to recover I felt incredibly tired; the smallest tasks would exhaust me after a few minutes. I had a period of – well, not full-on agoraphobia, but a feeling of nervousness and exposure when I went outside. I found it very, very hard to be alone sometimes, which I had to be because Angie lived and worked in
for three days each week. And I still had setbacks, when the anxiety would flare up badly again, or take a slightly different form. But I learned that these were to be expected, and that without recovery there would be no setbacks! It was hard work, but I practiced my breathing, muscle relaxation and thinking skills daily, and talked to No Panic frequently. The alternative to working at it – continuing fear and disablement – was not an option. Even if I wasn’t sure I could do it, I also couldn’t live like that forever. I had to try. London
Throughout it all, Angie was amazing. It was incredibly hard for her, but she looked after me and only very rarely lost patience. I’m very aware that recovery is that much more difficult for people living on their own; isolation tends to breed yet more anxiety. And others are less lucky than me, in that they live with people who don’t understand and cannot show empathy or even – sometimes – sympathy. This produces another kind of isolation which is, perhaps, even more painful in some ways than living alone.
Even during my recovery, I began to realize that withdrawing from anti-depressants might not have been the only reason for my breakdown. Having anxiety made it virtually impossible for me to keep up my involvement in anti-war work; I made several attempts to restart it, but after a while it seemed to trigger more anxiety. And that made sense. As I’d learned more and more about the causes of anxiety, I realized that for the past few years, I had already been coping with low-level stress and anxiety. Pain, of course, causes stress, which is partly why so many chronic pain sufferers are also anxious. But the anti-war work was also stressful, and more than that, it was frightening. War, torture, organized lying by world leaders – these are dark subjects. I’d been afraid for the future ever since
Iraq was invaded, and with the increasing erosion of civil liberties in , some of those fears were getting personal, especially for a peace activist! I was feeling increasingly unsafe. And the need for personal safety and security is paramount for anyone’s well-being. So I had been living with a sort of low-level, background anxiety for years, combined with the physical and emotional stress of being in pain. I also put huge pressure on myself, within what was a very small peace group, to do more and more of the work of that group. Looking back, it’s not at all surprising that my nervous system reached a point where it screamed “STOP!!!!!!!!!!” Britain
And so I did stop. I had no choice, really. For months I couldn’t do much more than lie on the sofa, and once I’d started getting better I found any kind of political work exhausting and depressing. Instead I worked on recovery, putting Angie and myself first at last. And I really did get a lot better.
By the beginning of 2009, despite the occasional setback, I felt on cloud nine. I’d recovered from the worst experience of my life. I’d successfully withdrawn from valium after several months of taking it daily, sometimes at high doses. I had very little physical pain, and my fitness had improved so that I even managed to climb Windover Hill, my favourite place on the
South Downs. Every day I walked round my local park, instead of just down the road and back like I’d been doing a couple of years earlier. The trees were blossoming, the birds singing and the squirrels playing. My life was coming back yet again.
Then, quite out of the blue, the pain flared up badly, and once more everything seemed to close down around me. I lost physical fitness, could barely make it to the end of the road and back, and entered what felt much more like a depression than anxiety.
This too was an extremely painful experience, and I felt stuck and trapped in my feelings. As with the anxiety, I was frightened for a while that I might not recover, and this time referred myself to my local mental health team for support. I had much reassurance from them that I could recover, and by practicing my thinking skills I got better in weeks rather than months. I still have to be careful because my mood can slip easily, especially if I’m in more physical pain than usual. But my experience of depression, although frightening, was briefer and less devastating than my breakdown of a year earlier. And this in spite of the fact that many of the therapies usually recommended for depression, such as having brisk walks in the fresh air, were unrealistic for me because of my physical pain.
As for the pain flare-up, it lasted a long time. At this time of writing, I’m still not back at the levels of fitness I had in early 2009, and in a way it seems like starting all over again. Looking back, I realise that I’d become over-confident about my body; I had pretty much stopped pacing myself, and was neglecting the deep relaxation exercises that had helped with the pain as well as my anxiety. I didn’t know that although the pain had gone almost completely, the chronic condition was still there. I had stopped looking after myself in the ways that I had learned to do, and if I am to avoid such a big flare-up again then I need to make sure I don’t repeat that over-confidence.
Other conditions, which for me complicate things further, are intermittent back pain, joint hypermobility syndrome (a genetic condition apparently passed to me by both my parents), and a mild facial pain which I've had since 2009, and which my GP thinks may result simply from tension. I have learned so much, however, that I know I have all the tools I need to control or reduce my pain as before. It’s still difficult, but one of the things that helps is that I’m on a fairly effective cocktail of different medications, which definitely reduce the pain although they don’t seem to touch it much during flare-ups. A TENS machine is very helpful during flare-ups. Many chronic pain sufferers use TENS, which works by sending mild electric pulses through electrodes attached to the skin. This gives the nervous system a neutral but consistent sensation to focus on, and this can partially or even completely over-ride the pain signals as they reach the brain. I wasn’t convinced at first, but during recent flare-ups the effect has been both noticeable and welcome. It’s another tool which I’m learning how to use, and it’s non-addictive and has no side-effects!
In addition to all the skills you learn on a pain management programme, such as relaxation and pacing, I’ve found the practice of mindfulness to be profoundly helpful, although not the easiest thing to learn. Accepting non-judgementally whatever is happening in the present moment, which meditation helps the mind to develop, teaches us not to get caught up in our stories about the pain – stories which only increase our suffering and the negativity of the experience. Thoughts change, feelings change, even pain changes. As the author and ME sufferer Toni Bernhard says, life difficulties are like the weather; they will always happen, but they’ll always blow over! This doesn’t mean that I’ve stopped trying to help myself in other ways, or to avoid trying new medications or anything else that might help. But acceptance, I’m learning, is the key to living with a chronic condition. Fighting, resisting the pain, only brings more suffering. Acceptance is a huge part of the change in attitude needed to live with chronic pain or illness – and chronic pain or illness can also be a metaphor for all of life’s unasked-for challenges.
It can be such a relief to let go! – although, as I say, it’s not an easy thing to learn, because resistance to pain is an instinctive thing. In a flare-up or an anxiety setback, I find it very hard indeed. But I’m learning, slowly.
Other therapies, too: massage is great! I can’t afford a professional one very often, but I try to have one whenever I can. Since the beginning of 2011 I’ve been learning a very gentle form of yoga called dru yoga, which I can practice at home even with the pain levels that restrict ‘normal’ forms of exercise. And two years ago we adopted a cat called Tally, who has brought joy into both of our lives and has helped so much to relieve my isolation when Angie is working in
. I can’t over-stress how vital it is to have companionship, empathy and support when living with chronic pain or illness. Since I spend most of my time at home, the internet has been a wonderful source of this: a kind of virtual sangha, as a Buddhist might call it. Social networking on Facebook, as well as blogs and forums, put me in touch with the world in a very positive way. And I’m in long-term therapy too – partly to help me deal with the pain and other changes in my life, and partly to help me resolve past traumas and difficulties. The support, expertise and steadfastness of my therapist has helped me to develop a greater inner strength and resilience through these life difficulties, while helping me to hold and contain the worst feelings whenever they arise. It’s a beautiful relationship, however temporary. London
There’s a part of me that’s very curious about the pain itself: how it works, and why I developed it in the first place. For me, understanding the physiology of pain, and how pain signals are processed partly by the limbic system in the brain (which is the home of basic, primitive emotions), helped to normalize my experience. I could see how emotional distress is a normal reaction to being in pain; it’s a part of the process, so being depressed or anxious doesn’t make me a wimp! I find this knowledge very reassuring; it counteracts the urge to beat myself up and create more suffering. As to why this strange form of chronic pain occurred in my body out of the blue, I believe my therapist is probably right when she says that childhood traumas (including the surgeries) and later emotional events are all involved in triggering this physical malfunctioning of my nervous system (neuropathy is a malfunction, because it is pain that’s outlasted the healing time for injury). I had a deep emotional loss, for instance, three years before the pain started, which I am only now beginning to work through and hopefully get over. I guess these connections would be hard to be absolutely certain about, and neither do I want to discuss here my private therapeutic process. But recent research does seem to suggest strongly that trauma can be ‘held’ in the body throughout life if the experience remains unresolved. The muscles can be kept in a state of chronic tension, stress chemicals flood the nervous system, creating a continuous state of excitation and over-sensitization. That interests me too, because anxiety is also a state of chronic tension and over-sensitization to perceived danger, just as neuropathic pain is over-sensitization to unpleasant physical sensations. To many people, this theorizing might seem deathly dull – they just want relief from the pain! But I find this kind of understanding (I am, after all, a lay person with no medical training whatsoever) to be profoundly helpful. It helps me, when I’m in danger of ‘drowning’ in pain once more, to put it in perspective and realise that it’s simply a physical and emotional experience which will pass once the flare-up subsides. It complements the mindfulness practice, which similarly sees all experience as ever-changing and helps to encourage feelings of equanimity in the face of such ‘stormy weather’.
I also have the proof of past experience to show that it’s possible to improve and recover from the worst of my experience. This is especially true of my recovery (which is about 90%) from anxiety, but the pain also improved a great deal a few years ago, so I know that it’s possible to get back there. Despite the setbacks I’ve experienced, I now have far more hope and confidence (rather than over-confidence) about the future than I had when the pain first started. I still have a tendency to beat myself up, to blame myself for the pain and its consequences, although less than I used to. I still struggle sometimes with feelings of worthlessness, self-pity and the envy of other people for all the things they can do and I can’t. But I’ve also learned so much that’s positive – including the fact that those ‘negative’ feelings are a normal and almost universal component of chronic illness. So I’m looking to move forward. Managing pain and anxiety is hard work, but I know I can do it. And what’s more, I feel I have reached the point where I can share what I’ve learned with others.
I’m currently writing a book, with the aim of helping sufferers from chronic pain and the mood and anxiety problems that so often accompany it. Like Toni Bernhard, who wrote the wonderful book ‘How to be Sick’, I’m discovering that I can turn a life experience which initially felt disastrous into a positive thing that can reach out to others. It’s taking me a long time to write, because of my need to pace myself and rest frequently, but that’s okay. It will be finished eventually. I haven’t the slightest idea whether it will be published, but I believe in what I’m writing and if I can help even some of my friends with it then it will have been worth it. I’ll have done something not so unlike what I used to do professionally – not just help myself, but be a source of support and encouragement to others too.
Few things in life are more distressing than being in pain all the time, and few things more frightening (naturally) than living in fear or despair! Both experiences can make us feel that we have no control over ourselves or our lives, and that all enjoyment we once had in our lives is gone. I’ve been there myself; I know how awful that feeling can be. And it’s a huge loss as well, a kind of bereavement. Toni Bernhard, in a blog entry I read, described the four stages of grief as: denial, anger, sadness and acceptance. You don’t have to have lost a loved one through death to experience grief. So much is often lost when we’re struck by a chronic illness, that the experience of bereavement is there and it’s this that can sometimes lead to depression.
But the positive truth is that pain can be managed, and even reduced, with quite simple means that are complementary to any drug therapy you may be having. Although I can’t speak with certainty about other people’s experience, research shows that some relief can be gained no matter how severe the pain or how long you’ve had it. The same is true of anxiety, although I appreciate that if you live alone, or have suffered anxiety all your life, recovery may be more difficult. Even so, studies show that relaxation, cognitive-behavioural therapy, and sometimes meditation, do benefit anxiety and depression sufferers, even those who have suffered all their lives. I decided, in the weeks following my breakdown, that I couldn’t live like this without trying my very hardest to recover. I needed that hope, and now – without, I hope, being too evangelical about it - I want to share that hope and positivity with others.
Like I said, I’ve no idea if my book will be published or not, once it’s finally completed. But if I can help even a few friends with it, then in a way it will have been worthwhile. The blogosphere, too, feels like an expression of sangha, and I have found much comfort through meeting other sufferers from chronic pain or illness – often through Facebook, which has not only helped me make new friends but also linked me to their writing. I have learned much from these new friends. So it felt natural for me to share my own story in this blog as well.
Vidyamala Burch, another chronic pain sufferer and the author of ‘Living Well with Pain and Illness’, describes certain aspects of mindfulness as ‘coming home to the body’. Similarly, I see my own personal journey as ‘coming home to peace’. I spent years campaigning actively for peace in the world, reacting to the distress I felt at the terrible injustices my country has had a part in since our century began. But meanwhile I was at war within myself – in my heart, mind and body. And it was only by addressing this internal war, through listening to what I need and starting to take care of myself, that I could begin to live with the difficulties my life presents without creating more suffering and conflict. I haven’t managed it completely, and maybe I never will. But perhaps I’ve made a start.