Living with & Managing Chronic Illness
By Lauren Amphlett

As many of you know, chronic conditions like Aspergillosis require more than just medical intervention. Chronic illnesses necessitate emotional resilience, adaptability, understanding, and physical strength. Patient-centric strategies have proven successful in managing illness and improving overall well-being and health outcomes, irrespective of the condition. The journey can be challenging, particularly when first diagnosed, but having an illness like Aspergillosis doesn’t mean enduring a life of constant suffering.

 

What do we mean by manageable?

“Manageable” does not mean that your illness will completely disappear or you will no longer feel its effects. Instead, it means that the symptoms can be controlled to such an extent that they do not dominate your life or altogether remove your ability to function. Managing a chronic condition involves developing a comprehensive and tailored approach incorporating medication, lifestyle adjustments, emotional well-being, and social support.

 

Chronic conditions require more than medication

 

Understanding Your Illness 

Knowledge is power. Understanding your illness, its symptoms, triggers, and progression will help you manage it more effectively. Ask your doctor(s) questions, do your own research, and consider joining support groups where you can learn from others’ experiences.

 

Acknowledging limitations 

When we discuss acknowledging limitations while living with Aspergillosis, there’s a metaphor that captures this struggle: The Spoon Theory.

The Spoon Theory, conceived by Christine Miserandino, is a valuable metaphor within the chronic illness community to explain the energy required to live with such conditions. In this analogy, ‘spoons’ represent energy units. Each day, a person has a finite number of ‘spoons’ and must budget their activities to ensure they don’t run out of ‘spoons’ before the day ends.

 

So, how does this relate to acknowledging limitations with Aspergillosis? 

 

Physical Limitations

With Aspergillosis, common physical symptoms like fatigue or breathlessness may require more ‘spoons’ than usual. Understanding your body’s signals and resting when necessary helps you conserve your ‘spoons’.

 

Emotional Limitations 

Chronic illness can be emotionally draining. It’s normal to feel uncertain and anxious about your condition. According to the National Institute of Mental Health (NIMH), people with chronic illnesses may be more likely to suffer from depression. Therefore, depression is a common complication of chronic illness.

Managing feelings of anxiety or depression requires ‘spoons’. Acknowledging your emotional health and seeking help and support when you need it can assist in managing your emotional energy better.

 

Social Limitations 

Every social activity costs ‘spoons’. While it’s crucial to maintain a social life, it’s equally important to recognise when you might need to prioritise rest and recovery.

 

Work Limitations

The energy expended at work needs to be factored into your ‘spoon’ budget. Sometimes, it may require a conversation with your employer to adjust your workload or responsibilities to accommodate your health needs.

 

Understanding and applying the Spoon Theory to your life can be a powerful tool in acknowledging and managing your limitations. It’s not about resigning yourself to these limitations but prioritising and becoming effective at working around them.

Each of you will have a different number of ‘spoons’ each day, and what may cost one spoon for some may cost five for another. That’s why it’s so crucial to respect and acknowledge our boundaries.

 

The power of exercise 

Exercise plays an integral role in maintaining our health and well-being. Regular physical activity can significantly improve quality of life, boost mood, enhance lung function, and strengthen the immune system. However, the thought of exercise might seem daunting given the physical constraints of Aspergillosis. But it’s about finding what works best for you.

 

Exercise that suits your abilities 

Remember, the objective is not to exhaust yourself but to gradually improve your endurance and strength within your limits. Lower-intensity activities such as walking, stretching exercises, or chair-based workouts can be beneficial starting points. Even small activities like light household chores can contribute to your daily exercise.

 

Pulmonary Rehabilitation 

These are programmes specifically designed for people with lung conditions. They involve a combination of exercises to improve lung function, education, and emotional support. Trained healthcare professionals supervise these programmes to ensure safety and efficacy.

 

Breathing exercises 

Exercises like pursed-lip or diaphragmatic breathing can improve lung capacity and help manage breathlessness, a common symptom in Aspergillosis.

 

Yoga and Meditation 

Gentle yoga poses combined with mindful breathing can improve flexibility, balance, and strength while also helping with stress management.

 

Staying consistent

The key is regularity rather than intensity. Even 10-15 minutes of exercise daily can make a difference. As your endurance builds, you can gradually increase the duration and possibly the intensity of your workouts.

 

Work with professionals 

Always consult your care team before starting a new exercise regimen. They can guide you.

 

Listen to your body

Most importantly, listen to your body. If you feel excessively tired or experience difficulty breathing, it’s time to rest. Remember, acknowledging your limits is not a weakness; it’s an essential part of managing your health.

 

Mental health matters 

Living with a chronic illness like Aspergillosis can be physically challenging, but it also exacts a toll on our mental health. Anxiety, depression, stress, and feelings of isolation are not uncommon. Acknowledging these emotions and finding ways to manage them is as important as managing the physical symptoms of the illness.

 

Understanding the Impact

Chronic illnesses can lead to a range of emotional responses: fear about what the future holds, frustration over physical limitations, feelings of isolation due to changes in lifestyle or others’ inability to fully understand your experience. Understanding that these are normal reactions to your situation is the first step towards addressing them.

 

Communication

One of the most powerful tools in managing mental health is open communication. This could be with family, friends, a support group, or a professional counsellor. Discussing your feelings can provide relief and offer new perspectives.

 

Professional Help

Psychologists, psychiatrists, and therapists can provide strategies to cope with the stress, anxiety, and depression that can accompany chronic illnesses. Cognitive-behavioural therapy, mindfulness-based stress reduction, and other techniques can help you navigate your emotional journey.

 

Peer Support

We talk about this a lot, and many of you reading this will already realise the benefits because you attend our weekly meetings. Connecting with others who are dealing with similar experiences can be incredibly helpful. Support groups provide a platform to share experiences, learn from others, and gain emotional comfort from knowing you’re not alone.

 

Self-care

Prioritise activities that you enjoy and that help you relax. This could be reading, listening to music, gardening, or any hobby that provides a sense of calm. Mindfulness exercises, yoga, and meditation can also be effective in reducing stress and promoting mental well-being.

 

Depression is not a weakness 

It’s not just the physical discomfort and limitations that pose a challenge. Still, the emotional burden carried with a persistent health condition can also be substantial. Thus, depression is a common complication of chronic illness. Still, it doesn’t have to be a normal part of chronic illness. Depression can manifest through persistent sadness, loss of interest in previously enjoyed activities, difficulty sleeping, or changes in appetite. It’s important to recognise that depression is not a sign of weakness or a normal part of living with a chronic illness. It’s a serious but treatable condition. If you or someone you care for shows signs of depression, seeking help from healthcare professionals is crucial. Therapies such as cognitive-behavioural therapy, medication, or a combination of both can effectively manage depression. Remember, taking care of your mental health is a critical part of managing a chronic illness.

Remember, it’s okay to have tough days. Your illness does not define you, and it’s okay to ask for help when needed. Celebrate your achievements, no matter how small, and focus on the strengths that help you navigate your challenges.

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