Living with Pain

Chronic and acute pain can sometimes be the easiest thing to deal with considering the whole impact of chronic health, and it can also be the hardest and most unforgiving part to deal with. There's no off switch, it can be unpredictable, it demands attention and just when you are making a tiny bit of headway, you get put back a few days, weeks or months.  People who do not live with chronic pain simply do not understand life with pain. "Why aren't you screaming or showing you are in pain", and "if I was in pain all the time I would be", or "you don't look like you are in pain".  This dismisses your pain through their lack of empathy, experience and understanding. If you do scream and cry or live the pain visibly in your posture or through visceral emotions, then this can make the pain experience and your mental health much much worse. Living with chronic pain needs understanding, not judgement. In some cases you may have to work, live life even when you are experiencing high pain levels, as when pain is constant it may not be possible to take time out.  There are ways to help lessen the pain response relating to movement, exercise, posture and alignment, relaxation, releasing muscular tension and reducing stressors.

1. Learn body awareness - what triggers pain, what the types and categories of pain are, what helps each type of pain and what makes things worse. Pain is not simply one pain caused by one single thing. It is usually complex and can involve the connective tissue, muscular, bone, skin, nerve, acute, dull, pulsing, when moving, in stillness etc.
2. Use pain as a diagnostic - pain demands attention, and it can be an early warning system in the body to listen to, observe and respond. Developing body sensitivity in stillness and movement can help you learn about your body and your boundaries.
3. Learn how to soften your pain experience - through gentle exercise, mindfulness and meditation. Find natural methods that help lessen pain.
4. Reduce the stress state - stress can cause physical tension which can cause an increase in pain levels, learn to manage your mental health and reduce the stress response in your daily life.
5. Exercise daily - endorphins are released when exercising and are a natural analgesic. Physical tension is also lessened when you exercise regularly, as it keeps the soft and connective tissue mobile.
6. Change your response to pain - learn how to live with pain without it taking control. How you respond matters. Read more in my article on the absences of resistance. 
7. Develop health distractions - find what you love to do, a new hobby, learn a language, or a new skill, start an online group, and use your passion to happily distract you from your pain experience. For me this is the most important, to experience joy, laughter and playfulness to help distract you from pain.

Becoming an expert in your own pain experience and knowing your own body are skilled gifts.   Read more in my article here on how to manage life with chronic pain.  Read more in my article called pain instructs.

Isolation & Loneliness

One of the by products of living with chronic illness is the increased risk of isolation and loneliness. Living with pain and fatigue often means that there is not much room for anything else but survival on a day to day basis. Whereas before chronic illness you may have been someone who had an active social life, who loved visiting and doing things with friends and family, being out and about, exploring, taking trips and travelling around. Living with chronic fatigue and low energy levels is likely to lead to you spending more time at home, in some cases alone, where your connection with others diminishes. It can be very hard for friends and family to accept that you are unable to live as you did before, that you would love to have the energy or health to be out all the time, but you are simply unable to. You really find out who your true friends and loved ones are, and it is common for friendships and relationships to fade away. This change to life can be difficult to work through, as reducing face to face connection with others has a negative impact on your mental health.  You may also be faced with having to cancel plans again and again due to an increase in pain and fatigue etc.

Your world growing smaller isn't what most people with chronic illness had envisaged their lives would be. It is a horrible by product of living with pain and fatigue. You may be at home for the majority of your time. You may have to work and then be at home the rest of the time. It can be debilitating not having the resources to live a fuller and bigger life. The impact this has on mental health cannot be ignored. Your quality of life decreases by living within four walls, especially if you live alone. It can feel like you are watching other people live their lives from a tiny window that you cannot step through. Always observing and never interacting or engaging. Which in turn can be a constant difficult reminder of what your life used to be like and what you feel you have lost out on.

1. Being transparent with your friends and family is essential, so they have the opportunity to really understand your needs and what you are going through on a day to day basis. Consider it is a learning process for them as much as it has been for you.
2. The online world can help reduce loneliness, with the caveat that online friends can never replace face to face connection and try to avoid spending all day online. Become part of an online community for one of your hobbies or interests, or take an online class.
3. Find new ways to connect with other people in your local community, from book clubs to coffee mornings.
4. Seek out a befriending scheme for face to face or online support:  www.befriending.co.uk or www.ageuk.org.uk
5. If you feel that your feelings of isolation and loneliness are too much to work through alone, seek professional guidance from a professional talking therapist. You can self refer into your GP for mental health support or contact organisations like Mind UK.
6. If you are in crisis please contact SHOUT or the Samaritans. These organisations have a free and confidential helpline offering mental health support 24/7.

Misunderstood by Everyone

From friends, family, colleagues, work, state services, doctors, consultants, nurses to medical professionals. The most understanding people I have met, are those who live with chronic illness themselves. We are part of a group of people who have boundless empathy for others who live with the same challenges that chronic illness brings. For those who live with rare illnesses and syndromes, being misunderstood is a daily experience. This can be difficult to deal with as it is exhausting to try and continually advocate for yourself, having to explain your condition and symptoms over and over again to different people who stare back blankly. No one really understands the impact your health condition has on your life.

Our society is sadly built around how people look, from facial looks, to muscle tone, body weight and fitness. We have been conditioned since an early age to place worth and value on these meaningless things. Living with chronic illness may mean that you experience physical changes outside of your control. Body image can be a contributing factor to poor mental health when living with chronic illness. When your body changes visibly due to your health it can feel like you have lost control over your life, and can be an ongoing reminder of living with ill health. These changes may be from swelling, inflammation, medication side effects, hair loss, skin changes, scars, weight gain, weight loss, to the use of medical devices, support aids and mobility aids.  It is common to develop feelings of low self worth, low self esteem, low confidence, insecurities, worry, anxiety and depression. Take note that life is worth more than looks alone. One of my favourite quotes is:

and he went back to the fox.
"Goodbye" he said.
"Goodbye" said the fox. "Here is my secret. It's quite simple: One sees clearly only with the heart. Anything essential is invisible to the eyes".

With invisible and hidden health conditions the symptoms may not be visible and you may look and act like a healthy human when out and about. Society will also judge you for how you look when living with chronic illness with the examples of "but you don't look sick" or "you look so well".  This can feel like you are being dismissed, not believed, unheard and invalidated. People never see what goes on behind closed doors, and they rarely see or know the true impact that chronic health has. You may never see people living with a chronic illness out and about when they are in a flare. 

When living with chronic illness, passing off as someone healthy is a nifty trick that can be a double edged sword as it encourages people to think you are fine, when the opposite may be true. I hold my hand up to passing off as a healthy human daily, whether putting on a warm smile when in constant pain or presenting myself in a certain way. It gives me a sense of normality to not live my symptoms, pain and fatigue openly. It helps me cope and actually reduces some fatigue as I just let go of my symptoms and pay them little attention when I am working or out and about.

1. Clear communication is key - with friends, families, those close to you. Be open about your health, the challenges you face and the real impact on your life. Whether through conversation, writing letters, emails etc. Find a method of communication that works for you. People who care for you will want to hear your experience and your voice. It is as much a learning experience for the people close to you as it is for you.
2. Find people - you don't need to pass off as healthy around, where you can be you.
3. Find balance - between feeling misunderstood and being the eager advocate.
4. Choose your battles - only you will know when to advocate for yourself and when to save your energy. Use your daily resources wisely.
5. Find ways to develop self compassion and self worth - through professional talking therapy or practices that help foster these life skills.

Grieving & Loss

Living with chronic illness may mean going through a grieving process over the life you had before you became ill. In some cases this can happen again and again as your symptoms worsen and the condition degenerates. It is extremely difficult and traumatic to lose your identity without it being within your control. For some people it can be sudden, an overnight change that tips their world upside down in an instant. For others it can be a long and slow drawn out process that happens over many years. Neither is easier than the other, they both suck.

It is possible to build a new identity and live a meaningful life. It does take time and there will be a lot of trial and error. You almost have to die as the person you were, to create space to be the person you are becoming. What helps, and this comes from my personal experience is to find something you can do with your new baseline, that you love, are passionate about, and fills you full of joy. It could be a new hobby, new skill, new routine, new job, new friends, new connections, new way of living. There is great potential in change. You may always grieve the life you had before, I can certainly say that I go through times where the grief and loss feels stronger some days than others, even 15 years after my own health deconstruction.

You may experience common triggers of feelings of grief and loss that can cause a flood of emotions. It may be watching friends or family flourish and thrive in their lives and whilst you have no hard feelings for them, it can trigger a wave of grief and sadness over your own situation. Experiencing two lives / identities within one lifetime can be challenging, as you always have something to compare to, especially when you are struggling with health and know what it was like previously to live a healthy life.

The grieving and loss process is different for everyone and it is often does not follow a line. Whatever emotions and feelings you are experiencing, no matter when, where, how or why, they are all normal. Find ways to feel into these emotions, to express and acknowledge them behind the stories they belong to. The raw emotions are to be felt and honoured.

Deconstruction & Reconstruction

This is how I describe the changes that happens when chronic health, illness, accident or injury enters into your life. Going through a sudden and serious change to your health status changes you as a person, you either sink or swim.

The people that go through a health deconstruction have everything stripped away from them. Back to a shell of a mind and body. In that phase there is nowhere to hide, no pretending, no self, no nothing, you are in the rawness of your essence. Whatever you have been hiding behind or hiding from in life is waiting in that space. It is a time to work with your shadow and it is not easy as you are likely in the worst physical and mental state of your life. Sink or swim.

This is an opportunity, the most visceral opportunity you will ever have been given. In this space lies potential. To go inwardly, to find out what really matters to you, to make peace with who you are, to forgive yourself, to forgive others, to forge through, to create from new. Sink or swim.

Deconstruction changes you forever as a person, with the perspective that it is the natural you that is being birthed. You have left an old identity behind, one that may no longer serve you. Those who swim, the reconstruction can take many years, and like the grief process, it doesn't take a linear form. Paddle, swim, paddle, swim.

I am one of those people to have gone through a health deconstruction and reconstruction, mine was overnight when I was 32 years old. Everything changed within 24 hours and was never the same, I was never the same, my body was never the safe, my mind was never the same, and every aspect of my life changed. The people that I have met who have gone through something similar whether my students, or my peers, friends and loved ones, we have this special bond. We know what it truly means to have died whilst living, and to be reborn. What remains after a health reconstruction is only what truly matters in life. It is a deep psychological change that breathes new life. These people are the loveliest, kindest most empathetic and giving people you will ever know.

Exercise

One of the most effective self management tools for chronic illness is daily exercise. Whether 15 minutes or 1 hour, you need to move your body daily. Movement is vital to life long health, vitality and wellbeing. When you live with a different baseline from the norm, regular exercise can be the hardest thing to approach when living with chronic pain and chronic fatigue.  Medical research states that after only 5 days of inactivity, substantial skeletal muscle loss and loss of muscle strength occurs. Here are a mere few reasons to exercise frequently.

• Helps promote mental fitness.
• Releases happy brain chemicals.
• Releases feel good hormones.
• Helps improve brain function, focus, concentration and clarity.
• Helps reduce and slow the ageing effects on the brain e.g. cognitive decline.
• Promotes new brain cell growth.
• Helps reduce over thinking.
• Keeps you focused on the present, rather than worrying about the past or future.
• Reduces pain.
• Lowers blood pressure.
• Reduces stress levels.
• Strengthens the heart muscle.
• Boost circulation.
• Increases oxygen intake.
• Increases immune system function by up to 50%.
• Improves quality of sleep.
• Helps lower anxiety levels.
• Helps manage symptoms of depression.
• Improves digestion.
• Boost lymph system function which helps reduce inflammation and reduces the chances of diseases and cancers.
• Nourishes the joints, strengthens the muscles and mobilises the connective tissue which are vital to physical mobility and postural health.
• Helps a speedier recovery from injury and illness.

What exercise can you do when living with chronic health? This depends on your symptoms, physical ability, fitness levels and fatigue levels. Walking is a good way to build up to exercise gradually, or consider little or no impact sports if you have joint problems, like Tai Chi, Qigong, yoga, pilates etc. You may want to work with a physiotherapist or personal trainer to help support your symptoms whilst increasing the type of exercise and the duration. The aim is to find ways to exercise that you can develop into a home practice, and tweak as you need to with the ebb and flow of chronic health. If you have been sedentary for a long time, then you may need professional guidance to help you return to exercise safely and slowly.  What is paramount is finding something you enjoy doing and doing it regularly.

Healthy Habits

Living with chronic health means you may be more likely to develop unhealthy habits. It is really easy to say "develop healthy habits", yet difficult to do daily when you are low on energy, high in pain, unmotivated and feeling low. Taking time to improve your quality of life can seem too much. It's not all or nothing, start with tiny increments and aim low!

Let's use the example of developing a breath work practice. For most people they would think they need to set aside an hour of practice as that tends to be the length of a session when learning in group classes. Then when trying to schedule in an hour of time, it never happens, which is likely to lead to frustration or quitting, as it is too big of a mountain to climb. My recommendation is always start with less than you are able to do. With breath work start with 2 minutes of focus each day and when that feels familiar and comfortable add on another minute. Be consistent and build up your practice, tiny bit by tiny bit. Over time work up to 20 minutes or more. It might take a few months, but it will not feel like effort with such a gradual and slow build up.

It takes about a 1000 repetitions of something to build it into habit, routine or muscle memory. This method of building up a practice slowly helps weave the practice into your daily life in a gentle and compassionate way. The same can be said for healthy eating choices, use of smart phones, exercise, meditation, hobbies etc. What can you approach in a tiny way?

Breath Work

A practice that is often overlooked as being irrelevant because we all breathe right? When living with chronic health, as mentioned before you need to stay as healthy physically, physiologically, emotionally and psychologically as possible. Learning to breathe properly and / or developing a regular breath work practice is at the core of this. My recommendation is to add a 20 minute breath work practice into your daily routine. A simple and easy way to calm the mind and soften the body is by slowing down your breathing rate, breathing deeply and fully whilst focusing on body sensations. Follow along with my breath work course called Nourish through Breath.

• Slows the aging process.
• Increases brain clarity and brain functioning.
• Helps level the emotions.
• Brings your focus to the present, not the past or future.
• Increases body awareness and body sensitivity.
• Massages the internal organs.
• Stimulates the vagus nerve.
• Activates the relaxation response, the rest and digest state.
• Reduces stress levels.
• Reduces the physical symptoms of a panic attack.
• Reduces anxiety levels.
• Improves digestion.
• Boosts circulation and blood flow.
• Increases immune system functioning.
• Increases oxygen levels.
• Mobilises the muscles and connective tissue around the torso.
• Strengthens the diaphragm and pelvic floor.
• Supports lymph function in the torso, aiding toxin removal.
• Helps lessen the pain experience.
• Helps lessen fatigue.
• Can be done when incapacitated e.g. lying down.
• Can be combined with movement e.g. Tai Chi and Qigong.

Right Brain

Seek out activities and practices that help explore your right brain. Most people spend all day every day up in their heads, over-thinking, worrying, over-stimulated by technology and modern life, and disconnected from their bodies (aside from their pain experience). Effectively stuck in left brain processing.  The right hemisphere of our brain does not get a chance to play. To be healthy humans we need to balance both sides of the brain. The right brain is the feeling brain, the sensing brain, the awareness brain, the creative brain, the artistic, the expressive brain, the imaginary brain, the sensation brain, the bigger picture brain, the subjectivity brain, the emotional brain, the intuitive brain, the visual memory brain, the facial recognition brain, the learning to move in a new way brain (e.g. new choreography in a Tai Chi movement), and the holistic thinking brain. Here are some tips to let stimulate your right brain:

1. Breathing through your left nostril is said to stimulate the right brain.
2. Play games that focus on visual memory, visualisation and imagination.
3. Practice meditation that use visual memory, visualisation and imagination.
4. Create art work, from drawing and painting to sculpture.
5. Create literary work, poems, stories.
6. Create music, sing songs or write music.
7. Choose tactile activities that do not rely on technology.
8. Read books that explore visual memory, visualisation and imagination.
9. Learn new choreography; dancing, Tai Chi, Qigong, martial arts, capoeira, swimming, exercise, movement.
10. Develop a child like heart, encourage play, exploration, wonder and curiosity.
11. Be spontaneous.

When we are stuck in our left brain, the cognitive, logical, process oriented, intellectual, thinking side of the brain, the right brain weakens.  Too much left brain dominance can leave you disconnected from parts of yourself, like your intuition and creativity. Your hand eye coordination, motor functions and ability for complex body movements also reduces down. Like any brain skill, you need to train the brain to maintain functioning.  By training the right brain you can expect to boost your creativity, memory, concentration levels and clarity. Our brains need to be used as a whole, stimulating your left and right brain equally will improve brain, mind and body functioning. It is essential for mental health to train both sides of the brain hemispheres.  Read more about cross lateral brain connectivity in movement here, and why complex movements are so vital to life long mobility.

Mindset

On a basic level our minds function either in a fixed way or in a growth way. One sees problems the other sees potential. Part of self care is to develop and maintain a growth mindset. It can be hard when you are faced with physical and mental symptoms that restrict your life. However, there is potential in every situation. The potential to explore, play and grow. How you approach living with chronic health will make the difference to your experience. This can be a choice that you make, or something you develop over time through ebb and flow. Read my article on mindset here.

Developing self compassion is one of the most important skills you can foster. To forgive yourself, to care about yourself, to look after yourself and to foster an open heart. Living with chronic illness can reduce down your capacity to be compassionate, especially when experiencing depression and anxiety. As a skill, it is something you need to work at over time.  My favourite way to develop self compassion and compassion is through Tai Chi and Qigong. The movements help settle our emotions, open our frame of mind and help us feel more connected to our natural selves. We engage in mindfulness in our practice, allowing and training the mind and body to be fully relaxed, aware and attentive. Through breath work we are able to relax fully and come into the present moment. We become physically and mentally centred in both movement and stillness. The more centred you become the more space and awareness there is for compassion. We see struggle as opportunity in our training and release any holding on that is binding us. When we are aligned with our natural state of being, that helps us discover, accept and love ourselves. This in turn helps us develop compassion for ourselves and others. Read more in my article on fostering self compassion here.

Toxin Removal

The modern world is a chemical onslaught, which makes it a very toxic place to live in. The demands chemicals put on the physiological body is enormous. When living with chronic health you do not need more demands on the body as this can take away precious resources that you do not have e.g. increasing pain and fatigue.

• Consider everything you put on your skin from shampoo, soap, deodorant, make up, moisturiser, shaving foam, shower gel, sun block, fake tan, washing powder, washing conditioner etc. Unless you seek out entirely pure and natural products, you are likely absorbing chemicals into your body through the skin which your body has to deal with and remove again.
• Consider everything you inhale through your mouth and nose, from incense, air freshener, candles, hairspray, perfume, aftershave, washing up liquid, multi purpose liquid, cleaning fluid, soap, shower gel, shaving foam, make up, shampoo, sun block, fake tan, flea spray (for dogs and cats!), glue, soldering, paint spray, wall paint, new carpet smell, new clothes smell, new fabric anywhere smell, wallpaper, new vinyl flooring, vinyl anything etc. All of these offgas airborne chemical toxins, sometimes called VOCs (volatile organic compounds), which you absorb into the body through breathing, which the body has to deal with to remove again.
• Consider everything you ingest, see the nutrition and fluid column to the right.

When living with chronic illness, it is a good idea to remove as many toxins as possible, so that your body resources are not spent tirelessly removing toxins.  This makes a huge difference to my quality of life, as I live with multiple chemical sensitivity which means I the smallest amount of perfume sets off a flare in my body. I live as much as possible without chemicals and limit exposure to the unavoidable chemicals where possible.

Nutrition

One of the most important things you can do when living with chronic health is educate yourself and become informed over what you are eating and drinking. The modern diet is full of chemicals and toxins that are damaging to the body. Cleaning up your diet is paramount to managing chronic health. I have worked with naturopaths, Dr's of Chinese Medicine, herbalists and nutritionists over the last 15 years to find out what helps and what hinders the mind and body. Here are my personal recommendations:

1. Cut out all processed food and drink.
2. Avoid refined sugar.
3. Avoid manufactured wheat products.
4. Eat foods that are whole and unprocessed.
5. Source organic food.
6. Source seasonal food.
7. Source food from local farms.
8. Filter tap drinking and bathing water to remove toxins, chemicals, heavy metals, nitrates, pharmaceuticals, chlorine, fluoride, preservatives, pesticides and fertilisers.
9. Avoid any fluids with chemicals which means fizzy pops, energy drinks and anything with chemical sweeteners in it.
10. Avoid caffeine, sorry!

You may think this sounds expensive, however when you stop buying processed foods, takeaways, ready meals, sweets and junk food, the savings start adding up. I personally for the majority follow a paleo, keto and unprocessed diet with about a 10-15% tolerance for 'life'.  When I consistently eat clean and well, I feel the benefits in regards to my fatigue levels, vitality, clarity, brain functioning and mental health.

The biggest barrier I find to being consistent is chronic fatigue levels, when you are simply too tired to cook a nourishing meal and turn to easy food. Keeping an open tolerance for times you cannot eat well is helpful to avoid that boom and bust cycle.  As the all or nothing mindset is likely to lead to nothing all of the time. Plus when you do not eat well, avoid berating yourself over your choices. Life is hard enough as it is without causing inner conflict.