I never expected to be cared for

I never expected to be cared for by my husband.  Oh that sounds well! 

What I mean is I never expected to become so ill I would need assistance – certainly not at the age of 34.

My husband Paul has a written a piece about what it it is like to juggle self-employment and caring for me for The Guardian newspaper online as part of their week of work-life balance articles and blogs.

It’s one of my photographs :o)



  1. There is the journeys that we choose and the journeys that are chosen for us. It seems that you and Paul had something chosen for you, which is never quite as delightful and welcomed, is it. I am not sure what to say except that you have transformed your illness into more than that, yourself into more than just “I’m ill” and now paul is more than just, “the husband.”

    I’ll go out on a limb and say that while it is not an easy thing, that may not make it a bad thing; or while it is a hard thing, that may not stop it from giving beauty.

    I am not sure anymore, having lost so much, what I did expect, can you still remember?

  2. Well just thinking about it sent a chill through me.

    Yes, I think I can remember. But I find myself not wanting to dig too deep to see what’s there or recount it.

    I wanted to answer you in full – I waited a day until I had time to think properly. But right now I don’t think I am strong enough to think about what I expected without my lip trembling.

    It was certainly more active, more energetic. There was more travelling, more doing of things, more being there for him (and for family), more bearing the weight and the work and the worries, more sex and intimacy, more adventure and spontaneous stuff, more lazing because we wanted to rather than it being a primary occupation because of neccesity, more more more.

    Which is not to say that what I (we) have now isn’t as precious and happy and brilliant as all of that could have been – maybe it’s even better in fact. There’s no changing what’s gone is there? There’s no changing what I (we) have to work with in regards to health and disability.

    I’ve lost a lot. I’ve gained a lot. And most days I am joyful of the gains and they outweigh the losses. I remember you saying they don’t give gold medals for triumphing over pain and exhaustion (or words like that). I have to try not to think about it – or at least I have to think about it a different way or I would lose the plot entirely.

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