i would not wish this on my worst enemy

so this is what it feels like.

i'm sitting here typing this , and I feel my bladder filling up, and it is beginning to hurt.

soon I will go to sit on the toilet, and nothing will come out. I will tense up, then try to relax, then think of a waterfall (don't laugh), then turn the tap on and listen to the water, and after a few minutes I will start to pee.

then I will feel fine, for ten minutes. then I will feel my bladder filling up, and beginning to hurt.

and this is what it feels like, all the time. 24/7.

the 'hesitancy' has got so bad that my GP today has taken me off my pain medication and my antihistamine and just put me onto Diazepam for a week, to see if it improves - could be a side effect, could be muscular tension from the interstitial cystitis.

in the meantime, i'm taking my two children to Devon tomorrow. I don't think they're very excited. I spent most of today in tears so they probably think that's how I plan to spend the next week (it's not , by the way; but once the tears started coming today they just wouldn't stop).

i spent most of the day, between crying fits, packing the car.

My love/hate relationship with my Very Welsh Mother was definitely leaning towards the hate side this morning. She did nothing to help me with the kids so I ended up begging one of my best mates to take them so I could get things organised. Which she did, thank god. I spent two of the four hours of 'organising' lying absolutely still on my bed, waiting for the valium to kick in, crying silently.

and then I got an email from my NHS consultant's secretary, saying it's unlikely we will get funding for the drug, Elmiron, given as standard in the US for Interstitial Cystitis. He wants me to do 'instalation therapy', which basically means turning up at our grotty local hospital and allowing heavy-handed nurses to catheterise me , shove a load of chemicals in my bladder, and hope that perhaps they'll have some effect.

as if it doesn't already feel as if it's on fire!!!

I know for a fact through forums I've joined that patients in Devon and Leicester , and presumbably elsewhere in the UK, take it with the backing of their consultant.

I'm seeking a second opinion and trying not to give up hope.

But hope eluded me today. I need to get onto Elmiron. It has to happen. I will keep on fighting.

Incidentally, it can make your hair fall out. In patches. Alopeica patches. That's a possible side effect.

I have lovely hair. I love my hair.

But right now, I. Don't. Give. A. Fuck.

That's how bad this illness is. That's how desperate I feel. That's how much it hurts and why I am willing to try something that has a one in three chance of curing this thing.