Wednesday, 20 May 2015

The space between.

I have been wanting to write again for a while, but I just haven't quiiiiiiite managed it.

But here I am, back in the blogging saddle and ready to go.

I've been trying to put thoughts together in my mind for a while now, about the space I occupy.

The space in-between being healthy, and being one who lives with a chronic and disabling illness.

Today I have been both packing to go camping at the weekend, and also looking into buying a mobility scooter.

I have been to toddler group with the kids, but also spent 4 hours in bed this afternoon. It's an odd place to occupy.

The space between.

I fit into both worlds, at different times.

At times I feel out of place and a fraud in both camps.

Mentally it can be tough to deal with. I have amazing friends who really 'get it'. But even for them I can make it hard, as some days I want to pretend, pretend that I don't always feel unwell, kind of like you do at the end of a virus, that my limbs and joints don't ache, and when there is lots of noise and stimulation I feel totally overwhelmed and tired.

Then some days, I realise I have to acknowledge the condition more. I am slightly disabled, and it's not only better for me to acknowledge this, but also better for the people around me.

There are weeks where I don't really think about CFS, I just move about in the little world I have created which works, happily resting and pottering about with the kids. I am so grateful that I have this luxury. There have been many times where I feared that I wouldn't make it back to this stage of energy/ health. And this fear isn't unfounded. There are many women, who, after having kids relapse for years and years and are bed bound entirely.

But then I remember... 

I remember it, when my kids don't like walking much, and that is largely because we don't, we drive everywhere, even to the shop across the road.

I remember it, when the weekends have to factor in a few hours sleep for me.

I remember it, when to enable my husband and I to socialise one evening, I need a lie in, then a long sleep all afternoon.

I remember it, when we need a second income, but I am not well enough to go out and earn some pennies.

The space between 'normal' energy, health, and living with chronic illness is at times an uncomfortable and confusing place.


  1. Iove to read your posting again. You are right, there is always this fear that there might be a relapse. So I just be grateful for today, seize the moment, with the kiddos. And of course, praying hard that the grace for today will be there again tomorrow, and so on.

    1. 'Grace for today' is what's needed ey. Thanks for your kind words :)

  2. I love your blog and have missed your posts. I have M.E. and find reading about how you live and cope with your day so helpful and reassuring. I hope you continue writing.

    1. HI, I'm sorry it has taken me soooo long to read and reply to your comment. So sorry you also have ME, it's a tough road to travel isn't it ? I need to start writing again, today maybe..... :)
      Hope you have some good energy weeks this month x