symptoms unchanged, life unmanageable, pain untamed

So it's September again.. IC Awareness Month... my second since being diagnosed with IC.

I am painfully aware that I have done nothing to raise awareness of IC in the past two weeks except for to have one conversation with a friend about what it is really like living with it... But then I've been on the Elmiron 6 weeks now, and it is strong, and it's making my hair get thin, and it's not helping my bladder pain at all... and I am depressed, which never helps me to write much. Anger, yes; depression, no.

I think a year ago I was a lot more angry about having IC than I am now. I have almost, almost accepted it; which is not to say that I am ok with it, just that it has come to a point where I think well, here it is, and what am I going to do to get through this day if I am going to have to carry on living? But not in a particularly positive way; more just like a grim resignation.

Last September I spent every day furiously writing about what it felt like to have this godawful condition, how I live with it, how I wish I didn't have to, how other people make me feel when they don't understand or don't want to know or think I am exaggerating or making things seem worse than they are... I wrote and wrote.

This year, I feel like writing less. I don't feel like writing very much at all...
And that's ok.
It is fine to be quiet too. It is ok not to rant and rage all the time.

Anyway, Tali has once again pulled it out of the bag despite feeling really ill herself, and set up several cool projects in tandem, one of which is writing something through September from a word, or a quote, or a song, or a picture that inspires you. Visit www.icramblings.com for more info.

Here are my three offerings so far:

Isolation

Alone inside my body
I just want it to work again
I just want to feel like myself again…

But after two years, this is me.
Alone inside my family
Telling them not to worry.

I wake at 5 to pee for the fourth time this night
I creep to the bathroom trying not to wake the kids
Trying not to cry.

I walk out into the world alone,
Holding my head up high
Though my bladder is screaming, burning, bleeding…
‘You look well,’ they say.


Better to fight for something than to live for nothing?

In my darkest days IC feels like living for nothing.
I am fighting, so hard, but
A constant battle which I cannot win.

 I am doing every-fucking-thing…
Eating right, no booze, no spice
Bland and boring
Meds which make my hair fall out.

 And where does it get me?
Symptoms unchanged.
Life unmanageable.
Pain untamed.


Tear Down The House
https://www.youtube.com/watch?v=jbrF00Y4qE8

So here was a song to respond to rather than a quote or a word.
I don't usually respond emotionally to others song choices but I thought I would give it a whirl, and within thirty seconds, I was in tears.

'Tear Down the House that I grew up in, I'll never be the same again. Take everything that I used to own and burn it in a box.... I have no memory of who I once was, and I don't remember your name'; these exquisitely simple lines just made me sob, thinking of who I was before I got ill and who I am now; the people who were in my life and the people who have left my life and those who have stuck by me.... the finality of losing two years of my life to this illness and god knows how many more.... the stark reality of it changing absolutely every fucking thing.

I have nothing else to say about this song really except what a beautiful and cathartic choice it was and how much it just made me cry and cry completely unexpectedly. Thank you Tali.



More to come, no doubt...

Perhaps tomorrow I will feel more inspired to spread awareness outwards instead of purely reflecting on where this 'journey' has got me to after nearly 2 years.... but this is where I am today, so I am just sitting with it: symptoms unchanged, life unmanageable, pain untamed.