As a victim of Chronic Fatigue Syndrome (CFS, also known by the acronym, M.E. to avoid the tricky name Myalgic Encephalopathy) I have a somewhat tricky relationship with sleep. In the much –famed ‘Is this a dagger which I see before me?’ monologue by Macbeth in Shakespeare’s play, Macbeth refers to ‘wicked dreams’ abusing ‘curtain’d sleep’. Although I am not thinking about committing murder and I am not hallucinating, this image is something that has stuck with me because sleep is a big concern of mind. For many, sleep is that; a curtain, or blanket, enclosing us in warmth. In safety. A barrier between us and the outside world, where we can escape and recharge, ready for the next day’s events. Those who suffer with the invisible plight of CFS do not understand the comfort of this blanket, nor do we reap the benefits. But this is not a tirade about my woes, or others’ woes (although it will be explored through the lens of my own experience which is indivisibly linked with CFS) but rather a look at the idea of sleep, why we need it, why we need to defend it and how to get it right.
My relationship with sleep is different to others in many ways, but the behaviours which I am re-learning in therapy sessions (the only main source of ‘treatment’ currently provided by medical experts) is something which I am sure that we can all benefit from and are very much in need to be passed on, or at the very least, reiterated to all who live in a world which is, increasingly, trying to prevent us from ever sleeping.
Technology has a lot to answer for (she writes as she sits on her computer with her phone updating next to her, angry at the fact that as her phone updates she is disconnected from ‘the world’) and the expectancy by society and sometimes our places of work to be ‘connected’ also has an impact on our sleep, and equally as important, our relaxation. My modes of relaxation quite often rely on this ‘connectivity’ and reliance on technology; checking Facebook, messaging friends, reading the paper online, playing on APPs and, sadly, checking my emails before bed to ‘double check’ that I really am allowed to relax. I don’t think that I am alone.
One key area which all people with CFS who attend CBT (Cognitive Behavioural Therapy) are told needs to change, or be amended, is their pacing and ‘grading’ activities. This unsurprisingly means that we need to check in with ourselves to ascertain what a manageable amount of activity is for our capability and capacity, living our lives at an even pace and not defaulting to an ‘all or nothing’ approach. Grading activities refers to scaling up and down what we can or cannot do, deciding what we need to increase (relaxation, bathing, eating) and decrease (stress-inducing activities or situations where we can become overwhelmed.)
Life at a moderate pace is rather frustrating, especially when dreams and aspirations come in to play. After the initial frustration at this idea and seeing it as a barrier to my progression in my life, my career and my happiness, I realise now that this is actually how life is meant to be. Moderation is not restriction, although in other ways I am restricted. Moderation is allowing time in your life for all of things that you want to achieve in it, but also time to do absolutely nothing because that too is a valid and precious part of life. We should stroll through life admiring the scenery and mindful of life’s beauty, not charging through it and sacrificing our relaxation for other less important things. We won’t remember that deadline at the end, nor will our employer. If we are lucky, we might remember how one bright sunny day, our spouse announced their pregnancy, or we realised we truly loved someone as we watched them sleep on a morning that we chose not to get ‘up and out’ to seize the day, because taking time out to reflect on what is important is seizing the day. I will it once more; our online and corporate ‘connectivity’ is not what we will remember at the end. It is hands, eyes, caresses and memories.
This said, a ‘trend’ that therapists have noted in those with CFS is their feelings of guilt surrounding how others perceive them because of their condition. Living with an invisible illness can make you feel that way because it isolates your suffering, much in the way a bully always tries to isolate their victim so that their suffering will not be seen or heard. This is not just a trend in CFS, I would argue. As a society, we value hard work and competitiveness which leads to an imbalance in our work/ life ratio which interferes with our relaxation and sleep. We feel isolated, carrying ‘unseen’ burdens because our culture is not to show weakness, or to be ‘picked off’ in a survival of the fittest scenario in the workplace. Our suffering is invalidated by the need to strive. Strive for status, promotion, validation from our parents or simply to ‘keep up with the Joneses’. Oh, and we like to then spend time updating various platforms to then show everyone just how proactive and go-getting we are. As a collective, we need to be okay with not being the ‘fittest’ (sub in for prettiest, wealthiest etc) and we need to re-programme ourselves to not feel guilty when we simply need to say no. In doing this, we allow ourselves the time to complete our daily activities peacefully, ensuring that when we go home, we can relax and sleep. We need to eradicate the stigma surrounding leisure, by realigning and prioritising what it is that we value in life. Or put simply, ‘don’t sweat the small stuff.’
A final area which I feel is important to our well-being in terms of sleep and relaxation is establishing a routine. This doesn’t mean we need to colour code our underwear or plan out our meals for the next month or anything ridiculous and sometimes, the routine can bend a little…It means that if we manage our time effectively, blocking in time for relaxation and leisure, we are more likely to feel rested at the end of the day, rather than exhausted and unhappy because we feel like our quality of life is unsatisfactory.
An exercise that I have recently tried with students is the ‘Life of Pie’, which involves a pie chart and a little honesty (and, if you’re into it, coloured pens.) In this exercise a pie chart is drawn and students have certain categories which they must shade in according to what proportion of their day is spent doing these activities. Often they find that they run out of room in their pie chart for ‘hobbies’ and ‘working on their dreams and aspirations’. This is probably because they are having too much fun being with friends, which is understandable as a priority at 14. Disturbingly, sleep was a very small wedge in some of the pie charts I have seen from students, largely due to social media and this caustic concept of ‘connectivity’ which is, I feel, becoming an addiction. I fear that the sleep wedge reduces as we get older and I am worried about the impact of technology and the constant idea of ‘striving’ becoming even more destructive. This is why I urge anyone interested in feeling truly rested to establish a routine which leaves room in the pie for work, learning new things, basic care (eating, hydration, exercise and hygiene), time with friends and (something I struggle with) time alone, doing nothing.
My therapist would be proud reading this, because I have shown my understanding in her wise words, but that is not the aim of this piece. Its aim is to help you to defend your ‘curtain’d sleep’ so that you can feel rested, more productive and like your life is yours. Do not wait until retirement to rest. You deserve it now. Guilt-free.