Living with pain and fatigue, I cannot now remember a day without either. As a Tai Chi and Qigong instructor, who also lives with chronic fatigue, this article aims to make the invisible visible.
Raw Chronic Fatigue
Chronic fatigue is a full time job, except there is no time off in lieu or annual leave. The smallest diversion from your routine can cause an avalanche. And yet to retain a sense of self, we must try to exist in the real world.
For me, as a person living with Ehlers Danlos Syndrome (EDS), one of the major symptoms is chronic fatigue. As I age, my physical baseline degenerates at an increasing rate, causing more fatigue, more pain, less rest and less sleep. You learn to live with continual loss as your world gets smaller. With that comes grief, frustration and sadness.
Managing chronic fatigue is exhausting, ironically on top of already feeling exhausted. The simplest of tasks can be the biggest mountain. Time away from the home can be costly. Sometimes chronic fatigue does not appear on the day you have over extended yourself. It will be the next day, the days and weeks after. Or you may hit a wall in the same day. Every event in life needs planning and careful consideration. It’s micro management, a juggling act, trial and error along with adaptation to ebb and flow.
From chores to personal admin, personal hygiene, cooking, shopping, driving, walking, socialising, visiting, exercising, let alone working. Each tiny aspect of life is broken down into a limited amount of daily resources. Do I wash the dishes or my hair? I cannot do both in one day, nor can I drive to the shops, go shopping and then socialise. The choice is limited to one, lots goes by the wayside. I spend 11-12 hours in bed each day, resting and dozing with disturbed sleep. To be able to function during the day, as a minimum this is what I personally need.
When talking about fatigue, the general responses I hear are:
- I get tired too.
- Hope you feel better soon.
- Just push yourself through it.
- Try these pills that my cousin’s step brother got, he’s cured.
It is uncomfortable for most people to discuss and accept that you are not going to get well or feel better anytime soon, and may only get worse as time goes by. In my situation, the fatigue is caused by chronic muscular contraction, a birth defect in the DNA of the connective tissue, there is no cure, no getting better. Everything I do is to try and hold off the degeneration of the later stages of the syndrome. The number of conversations I have had, where people have been unable to accept there aren’t any tablets or doctors to make me better. I believe this says more about their own psychology than the syndrome I live with.
When I talk about fatigue to healthy people, validation would be the ideal, not confrontation, judgement or disbelief. Having lived with symptoms for over a decade, you can be assured I have researched and tried every treatment and method from across the health sphere. I have become a patient expert in my own symptoms.
Chronic health, pain and fatigue changes the core of who you are. I try to retain as much of myself as possible on this journey. As a person I have become less tolerant, more selfish and more vulnerable. There is also a stigma with fatigue, that it is in the mind. Because others do not see you at home living with fatigue, they do not see the restrictions on your life, they do not see the mental impact fatigue has and they have never walked a day in your shoes. I would not wish chronic fatigue on another person.
Often I hear the phrase ‘living well’ with chronic health, illness and fatigue. I use the perspective of looking for potential in any situation. Potential doesn’t necessarily mean action or doing, it can be inaction and non-doing. The art of wu-wei is to live well through ‘inexertion’.
How do I find potential in fatigue?
My aim is to exercise daily, whether 5 minutes or 1 hour. I have a home Tai Chi, qigong and yoga practice. The best time of day for this for me personally is just before bed. It is part of my ‘getting ready’ for bed routine. It helps me release physical tension and also reduces the amount of pain I experience during the night. Without my night time movement schedule, my fatigue becomes unmanageable. Any movement is helpful to both the mind and body. Too much causes more pain and fatigue. It’s all about listening to your body and responding with grace.
Deep abdominal breathing can be done lying down, sitting or standing. This makes it the perfect practice to help aid the symptoms of fatigue. Breathing is easy to do, we obliviously do it naturally without a single thought. In times of fatigue wherever we are, we can slow down our breathing rate, we can deepen the breath and increase our oxygen intake, helping our internal organs function better, helping us to lower our heart rate, lower our blood pressure and move us towards activation of the natural relaxation response. Through breathing we can also learn to release any physical and mental tension we are holding, which aids fatigue.
Meditation practice can be done lying down, sitting or standing. During the times when you are not in a bad flare, there are many meditation techniques from easy to complex that you can use to aid the symptoms of fatigue. And if you manage to nod off during a mediation practice, then cherish that moment!
Rest / Relaxation
Take time to pause more than you think you need. Pausing is a powerful way to take care of yourself. From small moments to scheduled rest.
Clean nutrition can be very helpful to a life with fatigue. From experience avoid refined sugar, processed and junk foods as these can worsen fatigue. Fill your diet with organic fresh vegetables, fruit, dairy, meat and fish. Whatever your dietary requirements, there are healthy choices you can make that don’t over-tax the systems in the body.
I love to read, and since my health baseline reached a point I spend a lot of time lying down, reading has become an important part of my life. The freedom within my imagination, helps me to move without physically moving. I love the smell of paper books and there is nothing like a good story to transport you! Laughter is also a great medicine, from podcasts to stand up shows, smile, laugh and grin your way through.
I describe acceptance as the absence of resistance, a neutral position. Yes, living with chronic pain is unacceptable. However, our response can either worsen the symptoms or can soften them. We can work to accept fatigue, through kindness and grace. Be gentle with ourselves, patient and forgiving as self-compassion is a key part of acceptance. Accept and express the range of emotions you experience as part of your raw life. Yes, you will have angry days, you are allowed to scream when you need to, and to cry with frustration. And yes, you will have manageable days.
Acceptance in the physical body is letting go, releasing and dropping any muscular tension you are holding. You can use body scanning mindfulness techniques which can be done lying down or sitting. Give power back to your body by practicing body scanning as a skill, so that at any time you can draw your focus internally. By leading the body into a more relaxed state, the mind will also respond. Learning to release physical and mental tension is essential when living with chronic fatigue.
Please speak with your doctor prior to starting a new exercise programme. This article is for information purposes only and must not be taken as medical advice.