confessions on a “bad day”

Rugged coast (Image:Lucy Mills, instagram)

Woke up feeling not so great this morning.

Since the symptoms are fairly general – ugh-ish-ness, achiness and general lethargy – I’m guessing it’s probably not a bug, more likely just the CFS/ME flaring up. When I wake feeling like that, I have to do battle with waves of non-specific anxiety – I feel ill-equipped to face the day owing to the fatigue, so the result is a kind of dread.  Which sounds melodramatic, but when I open my eyes and feel the fatigue heavy on me, it’s how it feels in that moment. Something shrivels inside me.

I have to soothe myself into the day, almost detach myself from the worry and talk it out. Have a slow bath instead of a quick shower. Sit on the bed for a while after getting dressed until I feel a bit less wobbly. Move down to the lounge. Fire up my laptop; while it’s waking up try and think about what I will do today. I feel a bit like my laptop – it’s a small netbook; if I ask it to do too much before it’s finished loading all the startup stuff, it gets into a tizzy.

Pray as I feel able – usually not very coherently. Often the tiredness steals all motivation to do so and that’s hard. I grieve for the lack of longing. I want to want to meet with God, but it’s a struggle. I can only cling to grace.

I then have to put aside what I had planned and hoped to do. What I had assumed I would be doing at this point. This is the hardest part; harder even than the expectations of the world are the assumptions I have in myself – assumptions that I will wake up, get up and get going like any ‘normal’ person would.

I  quickly have to put a stop to any ‘comparing’ with other peoples’ lives, or the life I would have without the CFS/ME rumbling in the background, sometimes – like that moment when I woke – roaring at me. I have to accept it and allow for it but not submit to the roaring, not cower before it. There’s a delicate balance.

I do get depressed. I’m unwilling to say so, usually, because one invisible illness is enough for me to deal with and to admit to – but it’s true. Most of the time I get depressed because I feel too tired to deal with things. I don’t know if I would still struggle with depression if I didn’t have CFS/ME. It’s a hypothetical, and I don’t know the answer. The depression piggy-backs the fatigue, when it comes.

That’s my confession, at the beginning of this year. I may as well get it out and stop sitting on it all the time. It emerges first thing in the morning when I open my eyes, depending on how loudly the tiredness is roaring. If I wake feeling energised, it doesn’t get much of a look in.  Then sometimes, at odd moments, especially when my energy drops suddenly, like a death slide, it gapes open inside me. I think I shall write about it one day. But not yet – not ready yet.

I pondered, as I sat this morning, slowly coaxing myself into the day – there are those who are really struggling at this moment because it is New Year. The line drawn for them is not a helpful one (as I talked about in yesterday’s post). For them the year looms before them as sometimes the day does for me, when I’m feeling extra tired. So I think of those for whom a New Year is a frightening time, when they have to keep on coping with whatever it is that causes their struggle – and I pray for grace for them too.

Grace. Always grace.

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3 thoughts on “confessions on a “bad day”

  1. Simon Marsh says:

    Grace, grace for you, too. What a wonderfully honest and delightful post. Thank you, as ever, for being so marvellously honest. I’m sure that this post will be of unimagined (and probably unreported) help to many, many people. It has been to me. Happy New Year Lucy – and all best wishes for both of you in your (now not so) new home.


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