Is that Okay?

It’s nearly over, hubster reassures me.  Three weeks of school holidays probably sounds like three weeks of chilled out heaven to some of you.  Togetherness, fun times, laughter.  The picture postcard of happy children, frolicking through wintry activities, a break from the hum-drum.  The more relaxed mornings are lovely, that is certainly true.  Most holiday mornings my nine year old will get breakfast for her and my six year old.  The bench will be strewn with crumbs, butter smears and vegemite; but they’ve eaten.  She’ll bring me a cup of tea.  On a bad school holiday morning, it might be just bananas before lunchtime. He’ll be building more of his lego or mastering a video game, she’ll be perfecting a new loom band design or reading a book.  But I’ll just be here, in bed, feeling like this.  Dreading the day and the energy debt I will accrue.

I have great kids, they are self directed a lot of the time. They communicate well, they listen. They try hard to make good choices.  I am really, really fortunate to have these two.  Given a few cardboard boxes, sellotape and craft supplies, they’ll while away an afternoon with an elaborate construction project.  They like each other for the most part, then sometimes, like all siblings, they really don’t.  The niggles, the bickering and then the fighting begins, a battle for supremacy, a tussle over territory.  It is usually when I am least able to manage it too; ah, the beautiful timing of parenting.  And then, for all the time the cardboard boxes have afforded me, the payback will be the mess.  I try not to let mess get to me, but this is not the way I like to live. I am embarrassed when people drop by and see the leftover detritus, the last of my priorities, the end of my rope.

But I am there, right at the end of it.  Hanging on by a thread.  I am so tired my bones feel weak. I have my sunglasses on, in bed, because the light hurts my eyes, radiates into my head and down my neck, needles down into my feet and hands.  I had to get up in a rush this morning to deal with one of the most difficult aspects of my illness. But standing suddenly, lurching to the toilet before my meds were even taken.  Ugh, let’s just say, it’s been a morning.  The thought of getting upright again today slips in and out of the possible scenarios in my head.  I can’t grasp quite how I am going to make that happen. But I will.  I will, because, if I don’t; who will?  Hubster is away today working, his project is “going live” today.  He might be at work tomorrow, too. Our resident teenager is having a well earned sleep in, and it isn’t her job.  This job is mine.

And the fact I can’t escape is, that I may be at the end of my rope, the holidays may be nearly over, but this, this is not.  This is just how it is.  This battle will be mine for as long as that proverbial  piece of string. On Monday the kids will go back to school and I will begin, task by slow task, to put it all back in order around here. I will still face this nemesis every morning.  I will still pay the price every afternoon. I need to begin to pack for the longed-for trip away we’ve got coming up.  I should be excited about that, but the mountain in front of it makes me want to turn my back towards the sun, and run.  There is so much bending when you pack.  And every bend, every reach, every teeth gritted task is more than I can manage right now. I have a task that is bigger than my ability.  Excuse me, but that makes me want to cry.

A friend asked me the other day, if my illness is ever present, or something that niggles away in the background and flares up sometimes.  
My illness is my constant companion, my suffering silence, my belligerent burden.  
I cannot ignore it, for it will make me pay.  
I cannot cure it, it’s here to stay. 
I cannot endure it, but I do, anyway.
I can tough it out, and do, and be, and achieve and succeed.  I can plan and prepare and pace and push through.  I can persevere and find joy and be grateful and search for hope. I can keep gritting my teeth and smile, even laugh.
But sometimes I need to complain about it.

Is that okay?  Because it is not nearly over, it is still here, every day.




10 thoughts on “Is that Okay?”

  1. Oh hun. I can’t put words together today as my brain is fried with exhaustion. I just wanted to say I’m thinking of you and sending much love from this side of the pond. xx

  2. I feel as though you just provided words for my life, the words that I have not been able to find. I do not have children; I’m only 22. It’s unlikely that they will be an option regardless. But the bone-aching exhaustion, the knowledge that even if you get through today, you still have to do it again tomorrow, the crushing awareness that words like ‘cure’ are now synonymous with ‘never’. That is my life. I love my life. I have a good life. But I have a hard life. And you have captured this perfectly. I’m sorry that a cure is also not to be yours, and I am sorry for the exhaustion. But I am so very grateful to have found your writing, your story, and your life. Just know that somewhere, someone is listening. Love and light x

    1. Oh Jessica, thank you so much for writing! I am very glad my words found you. Hello! Sorry that you also have to deal with this kind of groundhog day. You are doing it, one day at a time… and even more, you are writing out your words and inspiring people yourself! I love your sassy, soulful writing Jess. Your words help me too.

  3. I love love love your writing.

    But you know that already, right?

    I really have no words for you on this post.

    I feel so sorry (not sorry for you, just sorry). I feel sympathy, empathy, gratitude – for my life, the ease of my life. I feel guilt – for my easy life, and for neglecting to feel grateful enough for or be productive enough with my easy life. I feel exhausted for you, inspired by you and send so much love to you.

    I know that does nothing, changes nothing.

    But what else can I do?

    1. Oh gosh, Kate, the feeling and empathy of others does SO MUCH! Not nothing! Finding solidarity with others is the most wonderful solace. It is a beautiful thing that you do. I check my page for comments all the time and it is such an instant joy when I see a little number next to the comments icon in my menu bar. I LOVE that you take the time to comment. It’s like having a phone call from a good friend when you are feeling low. It’s wonderful. X

  4. I thought of you yesterday when I couldn’t hold a fork in either hand, do up my jeans or brush my hair. Stupid hands. Sigh

    I so wish you weren’t going through your illness and I feel like a big fat meanie saying this, but it makes me feel less alone reading your blog. So thank you and I’m sending you good juju. X

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