We Can Adjust The Sails

Four year ago I was full of energy.  Teaching is demanding, all-consuming, busy.  Never enough hours in the day, I became a multi-tasking octopus.  In one moment, I’d be counting coins with a group, observing a few playing shop, and soothing another one’s tears.  Break times were for tidying away the last lesson, setting up the next, talking to colleagues, mediating children’s fall-outs.  Rushing, racing and running around the school… tea was drunk on the go!  After school were sports matches to supervise, clubs to run, children to tutor, or meetings to attend.  TV time at home was always accompanied by marking, planning and hours of laminating!  From waking to sleeping, my weekdays were full of constant activity.  I thrived on the buzz, excitement and adrenaline flowing through my body.  It was my life for years, and I loved it.  I had bundles of energy.

So getting ill was hard and strange and frustrating.  Suddenly the amount of activity I could do each day was only a tenth of what it used to be. I missed and mourned my unlimited supply of energy; it took many months to accept that it was permanently gone.  When I realised this was my new state, I started to experiment; seeing how much I could fit into a day without repercussions.  In the beginning it was all trial and error.  I made many rookie mistakes which made me ill – cramming in successive tasks if I felt good, going out the night before a big event, forcing myself to do more exercise than normal.  But slowly I recognised the patterns and the rules.  Slowly I learnt what I could do without being ill.  Slowly I understood the new way I would have to live my life.  As I became more involved in the world of chronic illness, I become aware of a wonderful metaphor for this, called “The Spoon Theory”.  This is my slant on it, using money instead of spoons….

Imagine people are like a coin-operated toy- if we want to do something, then we need to put a penny in the slot.  Every activity in the day costs a precious coin, nothing can be done for free.  ‘Normal’ people have an enormous bag of coins to use each day, so can move and work and keep busy, never running out of pennies.  However, due to my illness, I’ve only got 20 coins each day, so need to choose wisely how to spend them.  Most of my activities cost 1 penny, but longer or very active tasks cost more: walking on the treadmill (4 pennies), lifting weights (3 pennies), cooking dinner (2 pennies).  In the first two hours of the morning, I spend a quarter of my day’s allowance: I shower (2 pennies), get dressed (1 penny), make breakfast (1 penny), feed Lottie (1 penny).  Consequently I then need to spend time resting and lying down, to save my remaining coins for later.  Sometimes extra pennies can be earned by having a sleep in the middle of the day.  Each morning I need to think carefully about what I want to spend my coins on, how much I need to rest, and if I need to sleep to earn more.

Annoyingly, because my condition fluctuates, I cannot guarantee that I’ll have the same amount of coins to spend each day.  One morning I may wake up energised, with 25 pennies to spend; so can cook something exciting or visit the library with my extra currency.  Other days I may wake feeling tired, with 12 pennies to spend; so choose to forfeit my exercises or getting showered or dressed.  When my condition is worse and my symptoms are high, my new normality is to have a very limited number of coins to spend.  When very ill in hospital at first diagnosis, I probably only had 3 coins daily.  Each day I assess how I feel, decide how much I have to spend, and then decide which activities to prioritise and do.

Like in a bank, I have a small savings pot and a small overdraft.  If I have an important event approaching, then I completely rest in the proceeding days.  By not spending all of my coins on the rest days, I can sometimes save a few of them and spend them on the big day.  This doesn’t always work though!  I also have a small overdraft, so occasionally, if it is a very busy day, then I may choose to use up all of my pennies and then spend more!  However this makes me feel very ill; the next day I have to continually rest and lie down, to go back into the black.

Nothing demonstrates ‘the spoon theory’ better, than a weekend away.  A fortnight ago we headed to the Lake District for a fabulous couple of days, to celebrate the wedding of our wonderful friends, Peter and Naomi.  Surprisingly for October in the Lakes, the weather gods were kind to them; blue skies and warming sun every day.  Members of Pete’s school choir accompanied our singing in the elaborately painted Catholic Church.  The reception location on the shore of Lake Windermere was spectacular; the calm blue lake was surrounded by beautiful fire-coloured autumnal trees.  The luxurious hotel boasted wood lined rooms, candles and open fires, amazing views over the water.  We were treated to an expanse of tasty food and drink; I couldn’t manage it all!  As it was a smaller intimate wedding, it was wonderful to spend so much time chatting and catching up with some old university friends, many of whom I hadn’t seen for a couple of years.

In the olden days, I would have been able to attend every part of the wedding.  I would have been chatting and catching up solidly each day.  We would have walked in the mountains, fitting in sightseeing around the big event.  However, nowadays, I have to carefully manage my energy, to allow me to attend the most important parts.  In the lead up to the weekend, I had been unwell, so had fewer coins to spend than normal.  However, I rested for a few days in the hope that I would have more energy for the big day.  The night before the wedding, when everyone met up for a celebratory dinner, I instead went to bed early, hoping to save pennies for the next day.  On the morning of the wedding, I was still unwell, so awoke with only 15 coins to spend.  Phil spent the morning hill walking, but I chilled in my room, to conserve my precious coins.  As I had a limited amount of energy, I had to prioritise which parts of the event to attend- choosing to go to the church ceremony, and the meal at the reception.  Therefore after the service, the other guests all enjoyed a champagne boat ride around the lake, whilst I rested back at the B&B for a couple of hours.  Later when I joined them, I had enough coins to last through some pre-dinner drinks and an amazing meal.  Afterwards, even though I’d spent my daily energy allowance, I chose to go in to my energy overdraft, so I could spend a couple of hours chatting and catching up and reminiscing and laughing.  It was worth going into the red for; I had a fabulous time.  The next day, we headed straight home so I could rest and recuperate properly.

So the last few years have been a huge learning curve, as I’ve learnt the new rules of living with my chronic illness.  Life is easier now as I know my daily energy allowance, and how to manage and conserve it.  A small part of me does feel sad that I am unable to attend everything at events, unable to talk to everyone, unable to live life like before.  But a much larger part is just thankful that I’m well enough to attend at all.  I now enjoy events more, I now notice the little details more, I now cherish spending time with other people more.  It is these moments that make a life.

And there are positives to life as a coin-operated dancing monkey… I get to legitimately prioritise going to the pub over doing the washing up… and am allowed an afternoon nap whenever I want!  🙂