There’s a question I’m sure most people who live with chronic illness know all too well: what’s the price I will pay for this? I’ve been counting the cost this week, paying for every action with a little more pain, a little further strain on tired eyes and mind and spirit.

Diary of a chronically exhausted vicar image
Monday evening. 
Today I put through four loads of washing, cleaned the bathroom (sans shower), vacuumed and dusted the whole house, cleaned the pool filters, and washed the weekend’s dishes.
I also sat down for spells between it all, read outside in the sunshine for a while, slept for an hour, and did my daily hydrotherapy session.
I am enjoying the pleasing satisfaction of clean surfaces and floors, of achieving a number of tasks, of having had a day of relatively free, and pain-free, movement.
But I now ask myself: what price will I pay tomorrow?
I suspect I’ll pay for the burst of spring-inspired cleaning today with considerable pain tomorrow. And it may be that, after 18 months of thinking about it, I might finally organise the hiring of a cleaner. I can afford to pay the price in money. No matter how satisfied I might feel right now, I do know that I haven’t cleaned the house effectively today, or fully; and it’s the first time I’ve dusted or cleaned a bathroom in months.
It causes me to ponder, for there is help I have sought – the delivering of groceries and pre-cooked meals. Why not for the cleaning?
I’ve not done it before, nor did we have anyone in when I was growing up. So it’s unfamiliar, though I know plenty of friends who do, or have at certain times, hired people to clean for them.
If you could see me, just now I slumped a little, downcast: am I finding the hiring of a cleaner another admission that I am unwell, I am not coping, and that is why I am resisting?
However, I was considering hiring a cleaner very soon after moving to Canberra, before the illness worsened again. There’s something undeniable about the life of a single person, even a fit and healthy single person, which is that there is no one to share the load. If I appreciate one thing about the times I shared a house, it’s that there was someone else to share the responsibility for getting the groceries in, paying the bills, keeping the place tidy and clean. Beyond the tasks themselves, it’s also that: the sharing of the responsibility. You back each other up. You’re not alone.
I’m reading a book about new monasticism – monastic ways of life for our current times. I was reading today about life in community, mutual accountability, shared responsibility. Of course I haven’t the energy now to start one myself, but I wonder, and not for the first time in my life (e.g., after watching Call the Midwife), about living in a small monastic community, in a big house perhaps, or a compound of units, a floor of an apartment building … I don’t know. The solitary life is a way to wholeness and wellbeing for some, but only if lived, somehow, in community. (some other people of faith talk about this here)

I guess today I have both enjoyed the gift of my solitary life, caring for my space, happy in my own company (and that of the Divine), and become aware of my being alone.

Tuesday evening. 

As anticipated, the cost I paid was pain. This morning my colleague asked, as he entered my office, ‘how are you?’ ‘Fine’, I replied. ‘I can tell how fine you are, or are not, by the pitch of your voice. You’re not really, are you?’
And I had trouble sitting up straight all day, because my muscles could not.
But there were things to do, people with whom to talk, life to live with my community. I managed for six and a half hours straight. Then I came home and flopped onto the couch, unable to think, unable to sleep: fatigued.

I’ve perked up a couple of hours later, and posted a poem I wrote for a moment in Australia’s fraught history of response to humans seeking asylum. The composing of the poem, even going as far as recording myself speaking it aloud, then posting and sharing in the social media world, is the extent of my participation in vigils to which others will physically gather at various locations around the country tonight.
To be fair, it’s not only the Chronic Fatigue that keeps me from attending such vigils and rallies. The tiredness that comes with Depression has meant I have not attended many of these events. Sometimes it almost feels enough to give voice to the feelings of the moment in poem, for the community, or perhaps only for myself.

I do seem to be in a mood of feeling sorry for myself this week.

Time to do something positive.

Time to find someone to help keep my space clean, for a start.

Friday evening. 

I have kept going, day after day, this week, eyes steadily growing heavier, muscles aching a little more each day. Tonight I feel so very, very tired.

In the midst of conversations to plan and share the load of caring for the congregation, particularly for the coming season of only one minister in placement, I have been aware of congregation members I have not visited. Some of the planning is because of this reality: my colleague does a lot of the visiting, for I have not the energy for going out and about to hospital bed sides: and who would want a visibly in pain, unwell, person beside their bed of pain and ill health, anyway?
It doesn’t stop me feeling guilty.

Aware that I had been feeling some self-pity already this week, I told myself to do something, to do what I could. Even as I write this now, I struggle to accept any worth in what I have done as anything more than seeking to make myself feel better, but I hold onto some hope that the cards I sent, the words I composed, the poems that sought to reassure, comfort, let my people know they are seen, they are remembered, would, somehow, be worthwhile. It is all I can do: but it is something I can do.

Tired as I drove out to my friends’ home for dinner last night, I went, because with them I am myself in a different way than in my role with the congregation, and it is healing. It was restorative.

DishesChronic Fatigue looks like: a week of unwashed dishes. I slept badly, woke to strange dreams, and went to the office so very tired this morning. I forgot one of the tasks I was to do, but did some good things regarding ministry with youth in the congregation. Returning home, I wanted to collapse into sleep. Instead, I washed the dishes and ate lunch, rallied enough energy for one more conversation with a congregation member it is my privilege to accompany through a difficult season.

Then I collapsed on the couch.

Now I add another poem to the random Suicide Prevention Month tweets I’ve undertaken to contribute, seeking to encourage others to talk, and to listen; finish this log of a week in which I have done too much, while feeling I have hardly done enough; pour myself a glass of wine and look forward to a long-awaited chat with a dear Edinburgh friend.

And you, dear reader? Is there a decision you’ve made but resist enacting? Is there something you can do, though it may not feel enough? May you find what courage, inspiration, determination you need to put it into action.