Living Well with A Long-Term Health Condition

An Evidence-Based Guide to Managing Your Symptoms

Angeliki Bogosian

• Publisher: Routledge
• Year: 2020
• Print ISBN: 9781138211131
• eBook ISBN: 9781315453552
• Topic: Medicine
• Subtopic: World History

Living well with a long-term health condition is one of the most challenging experiences one can have. Written based on the most recent research evidence, this straightforward guide to managing both the emotional and physical aspects of chronic illness gives practical suggestions of how those living with a range of conditions can most effectively manage their symptoms whilst still living an active and fulfilling life.

Covering a range of topics including self-management of pain, fatigue, stress and lifestyle changes, and adapting to a diagnosis, the book provides an accessible resource that will enable patients and carers to better understand and meet the psychological challenges of long-term condition. By taking a holistic approach, Bogosian empowers the individual to identify their own goals and the pathways to achieve them to reach personal satisfaction, while negotiating the complexities of their condition.

This book will be an indispensable guide to those living with a long-term illness, as well as their family members. It will also be of interest to specialist nurses, care consultants, or social workers working with people with a chronic illness.

Chapter 1
Itinerary

What has changed or needs to change

The body is beautifully made. It just works. It does its thing, and we get on with life. We create art, we bring up children, pursue a career, travel, bond with people, cultivate interests and hobbies. But the time comes when something is not working well. Symptoms prevent us from doing what we want to do. And then what? When the body changes, do we change? Can we still be us, when we can no longer do the things we used to do?

Yes, we can. We are more than the sum of the symptoms we experience. The core of us remains unchanged, despite the changes in the weather around us. No one wants to be ill, and no one wants to experience painful and ability-limiting symptoms, but the reality is that most of us will at some point in our life. For the most part, it is beyond our control whether and what kind of long-term condition we will get. What we can control is how much the illness influences our lives.

The first step to taking back some control is to understand the condition. This means learning about what causes the illness, its symptoms, what medical treatments are available and what you can you do to manage the symptoms. It also means observing how the condition and its treatment affects you. Most long-term conditions go up and down in intensity and don’t follow a steady path. It is useful to know your path, the symptoms their intensity and their patterns, what exacerbates them and what alleviates them.

With a long-term condition, you become more aware of your body. Minor symptoms previously ignored may now cause concerns. For example, is my chest pain a sign of a heart attack? Is this pain in my knee a sign that the arthritis is getting worse? And things get more complicated if you experience more than one long-term condition. According to NHS England,¹ of the people who report they live with long-term conditions, 24% have two long-term conditions and 20% live with three or more long-term conditions. In the case of multiple long-term conditions, it is even harder to determine which symptoms can be assigned to which condition. There are no simple, reassuring answers. Nor is there a fail-safe way of sorting out serious signals from minor temporary symptoms that can be ignored. It is helpful to know and understand the natural rhythm of your condition(s). In general, if your symptoms are unusual, severe, persistent or occur after starting a new medication or changes in the dose of your medication they should be checked out with your doctor.²

Taking it all in

Blanche

Blanche is known for her perfectionism and discipline. She is a floor manager at one of the biggest luxury goods shops in London, responsible for seven members of staff and for the recent 20% increase in sales in her department. It was Christmas, the busiest period of the year, when some strange issues appeared. Once working tirelessly, 12-hours a day, now Blanche felt tired and achy from the minute she woke up. Arriving home, all she wanted to do was lie in bed. The fatigue and the pain increased over time, causing anxiety, perplexity, fear – and sometimes, guilt. For Blanche was always a reliable worker, always on top of things and now she was distracted and forgetful and too tired after work to spend time with her husband and two young daughters, three and five years old. Blanche did not want to disappoint her employers, especially during the Christmas period, so she pushed through. Every single day was a struggle, but every single day she was there, at the shop. Finally, Christmas day arrived, and she spent all day in bed, unable to do as much as sit up to eat some of the Christmas dinner her husband had prepared. Well aware that a combination of the flu and work stress could have played havoc with her body, Blanche decided to take a week off work to rest. The week that followed was one of the strangest in her life. She could not move her body. Blanche felt like she was trapped in a jelly-like world, and every move required ten times the effort. A week passed, two weeks passed, and things did not improve. Blanche thought it was time to see her doctor, who took a careful medical history, took her blood pressure and some blood samples. The blood pressure was good, and the blood samples did not show anaemia, under-active thyroid or any liver or kidney problems, yet the lymph nodes in her neck were enlarged, indicating an infection. Unable to diagnose anything, her doctor sent her home with the instruction to rest for two more weeks hoping the symptoms will clear up. Unfortunately, things did not improve, but nevertheless, Blanche tried to get back to work, albeit, with not much success. The days she managed to get in the store, she could not think clearly and felt she was more of a hindrance than a help. Her doctor signed her off work for two months, which was then extended to four months and finally to six months. Blanche was devastated. It was so difficult for her not to work. She liked to give advice to less-experienced staff members, she loved the buzz of the shop floor, but she could not cope anymore with the stress of her work or the long hours.

After a few months and numerous medical tests, she was told that she had Myalgic Encephalitis, also known as Chronic Fatigue Syndrome. The causes and timeline of the condition are unclear. Her doctor suggested reserving her energy, getting into a regular but gentle exercise routine, a balanced diet and recommended going to a 6-week stress-management course.

For the best part of a year, Blanche was hindered by her condition, confused and worried about what was going on. But over time her condition became a smaller feature in her life. Once she had a name for her condition, she was able to make peace with the fact that this was something that she would need to deal with in the long run. She decided “It’s best to outsmart your condition, rather than battle it head on”. Leaving emotions aside, she tried to solve each medical issue methodically, the way she approached work issues, examining what was wrong and brainstorming how best to solve them. Blanche was able to let go of wanting things to be different, of wanting her condition to be cured, and she started to live her life.

Preceding lengthy periods of medical tests, hospital appointments and uncertainty, the diagnosis comes with mixed emotions. Finding out about your condition can be upsetting, but also it can be a relief. When diagnosed you might have felt devastated, overwhelmed or completely numb. There are no right or wrong ways to feel. Emotions have a ‘mind’ of their own; they come up without an invitation.

Feeling anxious is very common and usual in the early stages of the condition and after significant changes. When living with a long-term condition, it might be difficult at times to keep a positive attitude, especially when you feel unwell and your future appears uncertain. As a result, you may feel frustrated, angry, demoralised, worried, anxious or depressed at times. Feeling low and at a loss is normal and to be expected. Although small levels of distress can push us into action and motivate changes, being significantly depressed or anxious might have an adverse impact on the prognosis of the condition or even worsen the symptoms.

There are two ways that the emotional response can affect the condition: via behaviour or via the physiological changes that emotions create. Feeling tense, angry, embarrassed, stressed, anxious or low in mood produces physiological changes such as increased tremor and muscle pain, impaired memory and concentration, and poor sleep. Even if we try to shut out these emotions or ignore them, we usually still suffer the physiological effects. There are also some indications that depression is linked to alterations in the immune system,³ including for example in MS, researchers found depression was linked with increases in proinflammatory cytokine activity and inflammation.⁴ Research has shown that chronic depression is associated with clinical and immunological progression of HIV/AIDS, i.e. decline in CD4+ T cells.⁵ However, it is still unclear whether the depression caused the changes in the immune response or whether the immune response changes caused either depressive symptoms or progression of the condition which then led to depression. Furthermore, low mood and feeling numb may rob us of the motivation to make necessary lifestyle changes, such as changing eating habits, quitting smoking, exercising or taking medications as prescribed. Consequently, these behaviours can exacerbate the condition. For example, 18% of people living with a long-term condition smoke¹ and the people who smoke are more likely to have flare-ups in their condition and therefore more likely to be admitted to hospital.

Separating symptoms from their emotional impact

To discuss how best to manage your symptoms, we need to talk about the specific and most common challenges that people face. We know the answer to this question in rich detail thanks to many studies where researchers collected data on the most common problems through questionnaires or interviews. The illness demands can be broadly categorised in three-ways:

• illness related: learning to manage illness-related symptoms, such as pain, fatigue, complex treatment regimes and drugs side effects as well as learning to deal with a range of health care staff, hospital environments and treatments
• emotional demands: such as preserving emotional balance, self-image and sense of mastery and control, and preparing for an uncertain future
• social demands: continuing your social life, sustaining existing relationships and leisure activities.

It is not uncommon to be faced with a combination of physiological and emotional symptoms. With long-term conditions, many people assume that their symptoms are due solely to the disease itself. Although the disease can cause pain, shortness of breath, fatigue and the like, it is not the only cause. Each of the symptoms can contribute to the other symptoms, and all these can feed on each other. For example, depression causes fatigue, pain causes physical limitations, and these can lead to poor sleep and more fatigue. The interactions can then make the condition worse and create a vicious cycle that will get worse unless we find a way to break it. Besides, for some conditions these challenges will remain stable, for others, they will progress, or the symptoms will come and go at irregular intervals. When discussing later on in the book how best to manage symptoms, we will also consider the stable, progressive or cyclical nature of the symptoms.

Symptoms different timelines

Timeline	Description	Examples
Stable	The symptom appears and does not change over time; does not improve or worsen	Loss of motor function in traumatic brain injury
Progressive	The symptom appears and overtime, it gets worse.The deterioration can be fast or slow.	Motor challenges in Parkinson’s disease
Cyclical	The symptom appears, but then it will entirely or partly improve	Relapses in multiple sclerosis

The symptoms and combinations of symptoms will also interact with other factors, like the illness prognosis, the available medical treatments, the severity of the symptoms, the interference of the symptoms in everyday life and also the stage of your life and other personal, financial or family circumstances. These other factors will have an impact on the way you feel, think and act. And consequently, the way you feel, think and act will have an effect on your symptoms.

Unfortunately, we cannot control a lot of these factors, things like the stage of your life when you get the illness, the illness prognosis or the symptoms of the condition. However, what we can control is the way we respond to those symptoms. We can control the way we relate to our thoughts and feelings and the choices we make. Even though sometimes it feels like you have no power over the long-term condition...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Preface
• Introduction
• 1 Itinerary: what has changed or needs to change
• 2 Personal values
• 3 Strengthening body and mind
• 4 Symptoms management
• 5 Cultivating psychological skills
• 6 Lifestyle changes
• 7 You don’t have to do it all on your own
• 8 Designing the life you want
• Index