As a media-savvy society we are well informed of the importance of exercise and inundated with the latest fitness trends to support this. I had always loved exercise and committed a few hours each week to engage in some type of physical activity. This meant I had a balanced lifestyle of working full-time, being a mum and having fun. However, In August 2015 my life as I knew it changed. I remember the time well, January 2015 I caught a cold it developed into a chest infection which took six weeks or more to subside. I felt exhausted all the time (like having jetlag) and struggled to complete a day's work and provide care for my family, so I knew something was wrong. Over a six month period and numerous visits to the doctor I was eventually diagnosed with chronic fatigue syndrome (CFS) or as I prefer to call it myalgic encephalomyelitis (ME).
For those who are unfamiliar with the condition, ME is a chronic debilitating condition which hosts a range of symptoms including extreme exhaustion, non-restorative sleep, brain fog, joint pain, Inflamed lymph nodes, persistent sore throat, neurological abnormalities and sensitivity to light, sound, odours, chemicals, foods, and medications to name a few! Living with this condition has been difficult to accept but as a cognitive behavioural psychotherapist (CBT) I am fortunate enough to have a good understanding of the mind body connection, and my (mostly) positive outlook means depression can never fully take hold. There is no treatment for ME and the conflicting posts regarding what helps/doesn't help only adds to the distress, some have gone as far as to say "it is all in the mind'.
Following many months of research in a desperate bid to find a treatment I came across the much publicised study: PACE (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation trail funded by the UK medical council). This study claims graded activity alongside CBT is a successful treatment for ME. I was desperate to recover and did think "what if it is all in my mind and I just need to push past the pain barrier?" As a result I completed my own graded exercise programme using the PACE research as a guideline.
To begin with I completed 5 minutes of low intensity activity such as marching on the spot and jumping jacks every other day with the outlook to increase the time the following week. Considering a 45 minute workout was easy (ish) for me in the past I never expected 5 minutes to be a problem. I completed the workout four times in total and within a few days I had relapsed and never exercised the same way again.
It was only recently when a friend posted a video on social media called 'This is what happens to your brain when you stop exercising' (Frontiers in ageing neuroscience) did I realise how this has affected my life. The video highlighted how reduced blood flow to the brain caused by lack of exercise impacts on the brains memory function, cognitive ability and physical health. I felt annoyed, sad and worried. I was annoyed with the authors for being so insensitive to people like myself who cannot exercise, sad that I could no longer do the things I loved and worried about the impact my lack of exercise is having on my already ill health.
Two years into my diagnosis I have left a secure job as I could not maintain long working days, most days I struggle to do anything before 1pm. Now I work from home as a psychotherapist spending a few hours each week chatting to clients online or via the telephone.
I am very fortunate to be able to work from home. Some people do not have this luxury and the stress to cope financially must be immense. Having an invisible illness means that I look fairly normal, no one ever tells me I look ill and if I'm in the park with my family (sitting on a bench not running around sadly) or out shopping people may question if I am actually ill. But this is a sad reality of ME it has no rules and each hour can be different.
I have since discovered that a raised heart rate can worsen ME symptoms causing a major relapse and in hindsight I wish I had never attempted the graded exercise. I have learned that accepting my condition and listening to my body in a mindful compassionate way has brought me peace. Having this condition has given me great empathy for those not only with ME but any condition where a 'normal' life is not an option. The media will never stop promoting the importance of exercise and I would not want it too, however society needs to acknowledge that there is also a population who, through no fault of their own are not able to exercise.
My view on exercise has changed dramatically, I may not be able to go for a jog or take a spinning class anymore but I still make a small contribution to keeping my mind and body healthy. I stretch, just basic full body stretches every time I wake up. I rotate my wrists and ankles when sitting (like you do on a long haul flight) and I get some daylight. I am very sensitive to light but my body feels the benefit from spending a few moments basking in the sunshine from the comfort of my own bed. For people out there who like me cannot exercise I guess the important thing to take from this article is that, although you may not be able to do stereotypical exercise you still have some control over your healthy mind and body, you may just need to decide what that means to you and if you plan on any graded exercise please speak to a specialist first and learn from my mistake.