I was told by many well meaning people, at the beginning of my illness and in the early stages of my diagnosis, to be a patient patient: that this, too, would pass. So I waited to resume my life. For months, I put my life on hold until I got better and things went back to the way they were before the virus struck.
It did not pass. Instead, my life shifted to accommodate gastroparesis or, rather, I evaluated pretty much every aspect of my life to work out how I could start moving forward and build a life I wanted to live.
I realised though that, although gastroparesis might be a constant, life does change day by day and even the specifics of illness alter too. So, in a sense, the worst did pass. I found great comfort in knowing that nothing in life is static or permanent: the only certain truth is the reality of this moment right now.
The following thoughts and ideas have nourished, inspired and helped me. I think these are crucial life-skills (regardless of whether you have chronic illness or not). Each deserve an individual post (to follow!) but here is a summary of what I’ve found most helpful to date:
Day by day – It is a philosophy that both my grandfather and mother have lived by. Simple and effective advice for everyone. If you are having a good day: savour it. Take the time to notice and really enjoy it. If you are having an average day: find value in it. I keep a simple record of positive observations, thoughts and experiences that have happened most days. It always surprises me how much I have to be thankful for. If you are having a terrible day: discard it. Know that tomorrow is a new day and a new beginning.
I love this poem – ‘If I had my life over’ – written by Nadine Stair (age 85)
If I had my life to live over,
I’d like to make more mistakes next time.
I’d relax, I would limber up. I would be sillier than I have been this trip.
I would take fewer things seriously. I would take more chances.
I would climb more mountains and swim more rivers.
I would eat more ice cream and less beans.
I would perhaps have more actual troubles, but I’d have fewer imaginary ones.
You see, I am one of those people who has lived sensibly and sanely, hour after hour, day after day.
Oh, I’ve had my moments, and if I had to do it over again, I’d have more of them.
In fact, I’d try to have nothing else.
Just moments, one after another, instead of living so many years ahead of each day.
I’ve been one of those people who never goes anywhere without a thermometer, a hot water bottle, a raincoat and a parachute.
If I had to do it again, I would travel lighter than I have.
If I had my life to live over, I would start bare foot earlier in the spring and stay that way later in the Fall.
I would go to more dances. I would ride more merry-go-rounds.
I would pick more daises.
If I had my life to live over again.
Mindfulness is such an important part of my path to recovery. The Oxford Mindfulness Centre defines mindfulness as “the awareness that emerges through paying attention on purpose, in the present moment, with compassion, and open-hearted curiosity. Through cultivating mindful awareness, we discover how to live in the present moment rather than brooding about the past or worrying about the future”. Focussing on now helps me to stop worrying about what route my illness might take in the future and the grief that still sometimes surfaces for my former self, the life I had before illness, my abandoned Plan A. Adopting a mindful approach towards life might sound simple but it is not. It takes effort and commitment. The clinically proven effects of Mindfulness, particularly helping those with chronic illness and depression, are astonishing. But there are very practical elements to Mindfulness too: effective time management, enhanced concentration, kindness – these all benefit society and the workplace. Mindfulness is very much the buzz word at the moment bandied about by politicians, corporate giants, and the media but it is a secular movement of great substance and its pioneers (Jon Kobat Zin and Mark Williams) deservedly garner global respect.
Nature. I grew up in the countryside and always thought I enjoyed a strong connection with the natural environment: whilst you wouldn’t find me camping in a muddy field or contemplating a bug on a leaf, I relished time outdoors gardening and walking. But illness forced me to reconnect with nature on a daily basis: I realised that (like most of us), I spend a disproportionate amount of time in front of a screen each day. Walking became a necessary symptom management tool (it helps speed up gastric motility) so I now, whenever possible, take a proper lunch hour and walk around the beautiful University parks that I’m so lucky to have near my office. But my need to reconnect with the natural environment on a regular basis went further than physical symptom management – it became obvious that I was a lot happier when I was not looking at an electronic device. Nevertheless, my work involves many hours in front of a screen and the English weather is not always conducive to outdoor activities so when I cannot be outdoors, I have brought nature to me. I asked to change desks at work so that I am now happily situated in front of French windows with lots of natural light. I surrounded myself with various plants that are now thriving and I enjoy tending to my mini oasis in the middle of a 1960s concrete office! Away from work, I have made a conscious decision to limit the amount of time I spend online: I removed Facebook from my phone and have enjoyed spending more time with ‘real’ friends, I make a list of what I need to do when I am on the computer (e.g. online shopping) and I shutdown when I have finished those tasks, I read or listen to the radio before going to bed instead of watching the television.