Fatigue

 

"Many people confuse 'fatigue' with 'tiredness' but it is not the same. Fatigue is an invisible legacy of breast cancer."

Fatigue, we agreed, is not the same as being tired. It has been described as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind - a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. It may be sudden, constant, or come in waves.

    With fatigue not only presenting in a physical way but tiring us mentally, too, we wondered if this may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This might also decrease our ability to bounce back from low mood. So, when we are exhausted the low mood, possibly even depression, could become a vicious circle, actually working to fuel the fatigue.  Keeping our brains distracted, even when we are forced to rest, could be helpful in this situation.

    We know fatigue is a significant side effect in many of the treatments for breast cancer. It affects our relationships, family life and social activities. It can seriously impact our ability to work. Indeed, some women give up work completely, others reduce their hours, but not everyone is in a secure financial position which would allow for this. Many of us described only just being able to keep our head above water in terms of doing the day-to-day basics, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both.

    

    Insomnia seems to be a common feature of fatigue. As we become overtired, we worry about not sleeping as we lay awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early. Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, but all lead to the same extreme daytime tiredness. The one thing we crave is sleep, and it manages to constantly elude us. 

    

    Fatigue caused by surgery, radiotherapy and/or chemotherapy seems to lessen over time. Which makes sense, as our bodies make new cells and begin to rejuvenate.  But after active treatment has ended, we are dealt another blow as ongoing menopausal symptoms often feed into our exhaustion. Of course, menopause and associated symptoms may occur naturally, depending on age. However, they are often treatment-related, or induced by our hormones being blocked and tampered with during adjuvant therapy. Lymphoedema, if developed, can further deplete our energy, too. These effects can be long lasting. 

    

    It is important to recognise that those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be a continuous problem, requiring specialist support.

    

    Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest. It is difficult to know how our “new” bodies will respond to things like stress or activity and, therefore, it is hard to strike a balance.

    

    Whichever way we experience it, living with fatigue is extremely difficult. Many of us find it hard to acknowledge that we can no longer do as much. Feeling constantly unwell under its weight severely and negatively impacts our wellbeing.

How do we cope?

There really is no option but to learn to pace ourselves and this takes time. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean any time for ourselves, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem. Feeling under pressure to be living life to the full, along with expectations of gratefulness that our cancer is being treated, can work negatively to make it seem as though we are failing.

    Activities that can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session.  Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. Importantly, showing self-compassion and not beating ourselves up if we need to stop can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience.

    

    Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.

    

    There are courses, books and apps to help us understand cycles of fatigue and this insight can bring an awareness, which can be useful when planning our days. Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help (although that can be exhausting in itself!).

    Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. For example, we might decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day. We just know it will all be too much for us.

    

    The spoon theory is a useful tool. There’s plenty of information about this on the internet, should you wish to know.  It helps us to validate our symptoms, also giving us some useful language with which to articulate fatigue, in order for others to better understand.  We don’t want, or need, to be judged by others when we are already struggling.

        

    We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down. We know we are all different and there is no one right way to improve our wellbeing, but we will keep trying, hoping that time and support will help us to make positive changes.