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.