Reflections

In her book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhardt describes the frustration of having to remain in bed for the duration of a three-week holiday in Paris. She had caught a virus on the plane journey from California which completely knocked her down, and from which she still hasn't recovered, fifteen years later. Although very unfortunate for Toni, I am so glad she chose to share her experience of developing post-viral (and later chronic) fatigue. Having spent the past week in Spain with my parents, I have been coming up against this notion of what a "holiday" should look like...how much activity and gadding about is required to constitute a successful trip? These questions have been plaguing me every day until I remembered Toni's book. Of course it would be preferable to have sufficient energy to get out there and dip a toe in the Mediterranean, but it's just not possible sometimes - when the  mid-morning migraine persists, and the sore throat will not be pacified by analgesics or copious infusions of honey-and-lemon. Some days you get to the point where a small outing to the seafront turns in to an endurance test; fighting the pain of aching joints and throbbing head through gritted teeth, and then the payback of hours in bed afterwards to compensate for pushing it too far. Saying this, I am fully aware that a certain amount of pushing oneself is necessary to living a balanced life, even with fatigue. The key, for anyone either sick or well, is to learn to listen to your body so that you know when to push and went to rest. There is no established universal indicator. Today, for example, knowing that I have a 10pm flight to catch this evening back to the UK, and painfully aware of my limits when it comes to travel, I have decided against going out to the beach with my Mum who is keen to make sure my "holiday" is as "fun" as possible. Understandable, of course, but now that my definition of those words has shifted to mean something altogether different I am no longer bound by feelings of how I "should" spend my time. Sitting quietly, listening to a Paul McCartney in session on BBC 6 music catch-up and writing this seems to me a perfectly fulfilling way to pass the time on my last day here.

Since discovering that I may never fully recover my energy I have read as many accounts of post-viral/chronic illness as possible. And all sufferers conclude with the same message - this is an opportunity to learn to trust; in terms of knowing your tolerance levels and trusting those around you to accept when you have decided, one way or the other, whether to push or to rest. This constant balancing act is one that we all must perform but for those of us struggling with fatigue it is perhaps more pronounced, and there is perhaps more at stake when you choose to go against your instincts and end up either inevitably burning out (again) or missing out on an opportunity to get out there and experience life. Regret, and the accompanying self-flagellation, is part and parcel of this process of determining the best way to live moment-to-moment. For me, the challenge lies in letting go of this regret and learning instead to appreciate the unexpected small pleasures contained within a day of seemingly doing nothing. I'm glad, now, that Mum and I stayed in today because we received a surprise visit from a dear family friend whom I hadn't seen in years. She was only able to stay for an hour which was perfect really as it gave us time to catch up and make promises to see more of each other without causing me to get too drained. Socialising is one of the most tiring activities so it's often a blessing when it occurs spontaneously and without any expectations of how things should go. There will always be times when it feels like the "wrong" decision has been made and opportunities have been wasted or energy has been expended on something not worthwhile, and that's ok as long as every once in a while we can enjoy a carefree day or two free from such regret, simply following one's instincts and living in the moment. Equally, an encounter with one friend who understands and appreciates you for who you are, tiredness and all, makes it easier to bear all those encounters with those who are unable to empathise.

Suffice it to say that although my time away has not borne all the hallmarks of a typical holiday in the sun, I certainly feel emotionally restored and ready to face those challenges waiting for me at home. I made a decision whilst here - to stop trying so hard and to stop looking for approval outside of myself. I have a sneaky suspicion that I may end up enjoying life more!