But what you see is all an
illusion; social media is (in my humble opinion)all an illusion. For me as a
young (ish) person living with 9 long term illnesses it's even more important
to look like I am still living a life worth living. I'm not changing who I am or
what my life looks like by what I say on my social media accounts I just cherry
pick the best bits to share!!!
I only post pictures I like of
me: it's not rocket science is it!? Who would post pictures of themselves that
they are not happy in?
Makeup makes me look half human
on days in reality with cluster headaches this is what I look like - death warmed up!
'You look so well'
Yes, I went to a wedding at the weekend, yes, I looked well (did I mention how amazing my
makeup bag is?!) and yes I'm smiling. That’s what you saw from the pictures and
posts I did over the weekend.
I forgot to post the picture of my sitting on
the floor of the disabled toilets in my new pretty dress crying for an hour,
using my oxygen hugging the cylinder like it’s the only person in the world who
understands me. I didn’t write a post
about the searing agony in my head, or that my friends I’ve known for years
don’t understand my life or my illness
and how upsetting it is to answer the ‘so what do you do?’ question, again and
again, with no answer!
You look so well is a really hard
one; I want people to think I look good of course I do! But I constantly
interpret that as ‘I thought you were too sick to work… you don’t look sick’
Of course I don't want my
exterior to represent what's going on inside my body: But sometimes I think
maybe people would understand me a little better.
So yes we are lucky to see
friends, but we pay for the privilege, physically and financially.
My fatigue levels are like
nothing I've ever known. For every 'good day' that you see on social media, I
am then in bed for at least the equivalent amount of time. We just had a short
4 day break away and I spent a week in bed afterwards (worth it though)
I've learnt to be proactive and
productive on these recuperation days. My bed transforms into an office like
the Tracey island toys of my youth! So you may see me respond to emails or
tweet or post on facebook. I often spend
these days fiddling with Instagram filters making pictures of my days in the
real world look even more fun and beautiful that they were... All of this
online activity and you wouldn’t know that these are some of my worst days!
It's hard to convey how you feel
in 120 characters or a Facebook status. It's even harder in a single photo. Not
just for me, for everyone.
I want people to see that I'm
still functioning (just about!) that I still make time for my friends and
family and that I care about their achievements, birthdays, babies and our
friendships.
I don't want to waste my energy
and their Social media feeds talking about this depressing illness. I try to
mention it only when something good has happened and we have achieved something.
My friends might point out
something different now; but I hope I present the positive side of Katie on my
social media. This is my goal; I need somewhere where my life is normal... Ok
not normal that's a bit too much to ask, but more like the rest of the world.
But the message of this blog is
that it is all an illusion. Like a swan I may look like I'm swimming through
life, having fun and seeing friends but underneath I'm kicking like hell in the
biggest fight(s) of my life to stay alive. I don't want to talk about it, I
want to carry on talking about the good side of things but don't forget it's
not all there is... So please don't judge me.
