How to Stay Sane in Pain

This book is written by someone with lupus, with contributions from people with lupus, for people with lupus, and for those that love and care about them. It is also for those who feel unwell right now but do not know what is wrong with them and are searching for the source of their mysterious symptoms. Similarly, you may be the loved one or friend of someone who seems to be suffering from a range of strange illnesses for which there appears to be no answer. Some 1.5 million Americans have been diagnosed with lupus and it is estimated that approximately 5 million people worldwide currently have the disease. The majority with lupus have Systemic Lupus Erythematosus (SLE) which impacts the whole body, whilst some 10% have Discoid Lupus Erythematosus (DLE) which primarily involves the skin. Systemic Lupus Erythematosus in particular is not neatly diagnosed. No one or two clear symptoms are decisive and lupus is often described as ‘mimicking’ other diseases. It has mild, moderate and severe forms and the path of the condition can also vary from remission and dormancy to periods of heightened disease activity, known as ‘flares’. Systemic Lupus Erythematosus does in fact have a small group of tell-tale symptoms, but at present the disease is unfamiliar to most and widely misunderstood. This lack of understanding is leading to high levels of misdiagnosis, belated diagnosis and downright wrong diagnosis of the disease. Therefore, this could be one of the leading ‘sleeper’ diseases of modern times, with people suffering from Systemic Lupus Erythematosus, unacknowledged and untreated. Why is this important? Well because unrecognised and un-medicated it can progress stealthily to threaten major organs and thereby your life and also the life of unborn children. Lupus pregnancies are now routinely designated ‘high risk’ and the majority of those who are diagnosed are women of childbearing age. Although mild lupus can be well controlled by medication, moderate and severe lupus can be very debilitating and life changing, as this book will show. Patients often struggle against a lack of knowledge about the severity of symptoms and the progress of the disease. There have been great advances in the modern medical management of the disease in the last 70 years, but at the present time no permanent cure has been found. Whilst efforts to raise awareness of the condition continue to increase, there is clearly much more to be done. Some celebrity cases in recent years including Seal, Selina Gomez and Lady Gaga have raised the profile but more education and publicity is certainly needed. I was admitted to hospital for treatment for a severe infection in 2012, unaware that many of the illnesses experienced throughout my life had in fact been lupus symptoms and that in preceding months the disease had been progressing, quietly wreaking damage on my internal organs, largely undetected. What I also did not know that first night in hospital was that the infection had ignited a dangerous lupus flare, which would rage through my body, leaving me within weeks emaciated, life-threateningly weak, in a wheelchair and in constant pain. Once diagnosed with severe Systemic Lupus Erythematosus, it became clear that I owned a medical condition with a strange name that was not widely understood. Indeed, it was to become apparent that it was a complex disease and answers were scattered worldwide. This book aims to address those multiple queries which, from examining the forums on the Internet and interviewing fellow lupus patients, are shared worldwide. This is a multi-faceted condition, which needs a multi-faceted approach. Incorporating the stories of others with lupus and referring to the latest research, this narrative is divided into three easy parts namely medical, psychological and complementary physical. Part I, Understanding Lupus, gives a comprehensive understanding of lupus from how it is diagnosed, through its medical history, to its leading symptoms and medications and their main side effects. Part II, A Mental and Emotional Journey, recognises the psychological implications of living with lupus. Given my training and experience as a counsellor and psychotherapist, I was in a better position than many. Nevertheless, I still had to ride the lupus mental rollercoaster. Validation of these tumultuous feelings would have helped at the time and clarification would have bolstered my shattered confidence. This book aims to give you that reassurance by detailing the psychological toll of medications and the disease, with contributions from others with lupus to complete the picture. Part II then goes on to give you the psychotherapeutic solutions that I used to survive, to recover my equilibrium and gain a new sense of purpose and joy in life, despite chronic pain and debilitating symptoms. It shows exactly how to employ tried and tested cognitive behavioural techniques including positive reframing, rebuilding and rescheduling, together with mindfulness, guided meditations and visualisations. It is a step-by-step guide to changing your mind-set, renewing your sense of achievement and purpose and creating mental calm, despite hugely challenging circumstances. This part in particular may also be helpful to those suffering from pain and chronic illness due to causes other than lupus. The physical and mental benefits of part I and II are consolidated in part III, Holistic Physical Solutions, which firstly is a guide to sensible and achievable nutrition for lupus and shows what to avoid and what to add to your diet. Secondly, Part III describes those complementary physical therapies which reinforce the psychological work carried out, and which add benefits and healing not covered by mainstream medical treatment. These three parts come together to form a holistic methodology which combines the very best of modern medicine with psychotherapeutic techniques, optimum dietary advice and the most suitable complementary treatments. The result is a powerful mind/body approach, specifically tailored to this difficult disease. Ultimately, I have set out to write down the information and guidance that I really needed when my lupus ‘flared’ out of control. I am evidence that this approach is both necessary and beneficial, and this is the story of my journey.