Friday, March 25


nota bene 
Not every day is like this. Some easier, some harder. But days have been like this in school, university, years of no occupation, and motherhood. This is cfs in all circumstances.

So I guess we can get through today because we got through other ones. God help me.
Linger. Linger on every bearable moment. Whenever you can be still, just stay an extra second.
Relief. She is hungry. May this feed last forever. The longer she quietly drinks, the longer I can sit here not moving.

Oh no, a nappy. I’m going to get up and change it, I can do this. I’m going to force my dizzy, headachey eyes to look right into hers instead of blurring out on the white wall. Focus takes focus. And if I smile, can she tell that it’s a physical strain? Can she see the love behind the wasted face it’s coming from? I really hope this smile seems normal to her because it’s abnormally hard to produce.

Fed her to sleep, well and truly, transferred her to bed, all is quiet. No strength for different methods. Now I lie here, and if this could last two hours, that would be two hours of not looking after her, and two hours closer to the end of the day. How sad to count down the hours like this, when these days are precious and irreplaceable. Please, please, last two, it’s the make or break.

No, no, no. Don’t wake. Don’t stir poppet, I love you but I don’t think I can do this. I need to lie here longer. Oh help, I have to pick you up, and even though you’re really as a light as a feather and mini for your age, you are like bricks to my arms.

Malaise, is every cell dying everywhere.

It’s not you, you’re not a burden. It’s me. I’m a burden to me. Physical burden to mental me.

Smile. Sing to her. You don’t have to see the world clearly to pick her up and sing. She can’t tell that it’s strained, don’t let that hold you back. Ok, I feel horrendous. I can call Mum, or my sister if it gets impossible. Tell them my body isn’t working. More water. I’ll carry her to get another glass. Is it worth the trip? Ughhh. No water in the waterfilter. Have to carry it to the sink, so dizzy and wasted.

And now to tidy things up. Move one leg, move the other. This is possible. But this is too grinding. Possible does not mean pleasant, this is awful. I don’t feel like existing anymore. If I said that would people think I’m depressed or would they realize my body is just not functional?  

Just exist for the next half hour. Not the next day, surely you know this by now? Better days will come, there is always variety. Too many Acute Fatigue Bertie Bots Every Flavour Days. What a privilege to have a baby despite the illness though. And to have no regrets, to have fed and loved fully despite the pain. But should we have done this? Stop questioning that. She is meant to be, because she’s so incredible, because she came to be. Stop thinking about the future, each day has enough trouble of its own. I’m tired of worrying I can only endure this once in my life. Why can’t dogs count as siblings for real.

Get the most easy filling lunch possible. I feel bad that its leftovers Ben could have taken to work, or we could have had tonight, but no choice. I leave this kitchen with dishes piled high, unrinsed.

Another half hour has passed. Celebrate inside. Yes. Yess. Not crying yet, maybe we can make it till Ben’s return. But I can’t keep dangling toys and picking her up, my body isn’t working. I can’t do that for three hours more, and the sleeps are over, and what on earth am I going to do?

I’m going to load her into the pram. I’m not up to this, I’m really not. Goodness she looks mini and precious in there, I just love her to bits and pieces. Walk slow, if I could get this to last a whole hour, then it would be late afternoon. Come on legs. No, stomach you are not actually nauseous. Ok, maybe you are, but you can’t throw up here. Look, rotunda in the graveyard, I’ll sit here in this morbid place and simulate walking for a bit.

Home now. Dry retch in bathroom. Drink water. Epic time passing, excellent. Was that easier than holding at home? I wonder. This is the last stretch of the day, we are nearly through, can you believe it?

Standing in the front yard waiting for co-parent. Actually, let’s show her flowers. I don’t want to seem crushingly desperate, so I’ll go inside, and wait at the window instead. He must be here in about one minute. Yes, hello, I hear the garage. Ask about his day while subtly handing him cherubina. Lie in coma on the couch, maybe if I do, I’ll have the strength to feed a few more times before bed.

The problem is, she needs to be entertained while dinner is made. I’m not up to cooking, or baby minding. Takeaway or cry, I’m not sure. Maybe tomorrow will be different, will some strength be granted me before the 1:00 am feed, or the 5.30 am feed? I’m not sure. It won’t be like this forever. I just need to lie. Malaise.

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