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.
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.
Chronic 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.
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