Oh Lord , why hast thou forsaken me??

It's been a weekend of 'coping', entirely single-handed; we met up with a couple of friends, for a couple of hours at a time, but otherwise it's just been me and the children, and it's been full on.

My son's godmother, who's been doing some childminding with the children to help me, was going to help out but didn't end up coming over this weekend in the end - we mixed up the plan, and then she was ill; and my Mum is away doing other Very Important things in other Very Important places.

And so it ended up at that 1pm I was in my very ancient, very wise grandfather's flat, having survived a church service with the two children in tow (I was mostly at the church not for the comfort of the Lord but because I need the Vicar to sign a form for PPB's school entry within the next fortnight; he knew why I was there, and I knew that he knew, and he knew that I knew that he knew....) .

There I was, unloading a huge waitrose order (16 cans of baked beans, 4 fruit cakes, 14 tins of tonic water etc etc) whilst keeping my children occupied with colouring / building blocks / whatever else I could find for them to do, settling minor or major disputes between them, making coffee for my grandfather, talking to him about regime for his eye drops for his near-blind eye, juggling this and that ... when I realised with a jolt that I was being so tetchy and irritable to all concerned because I was in so much pain because I hadn't had time to go to the toilet!! I had this burning feeling inside because I hadn't had a minute to empty my bladder. And I had become so accustomed to this feeling that I hadn't even stopped to identify what it was.

And this was after I'd had to leave the church service half way through to find the freezing church toilet, hoping the children would still be there when I was back (they were - this isn't London) and that they would be behaving themselves (again, they were - maybe miracles do happen after all).

So I stopped and took 5 minutes and returned to them all, making more of an effort to be gentler, but full of resentment at the whole situation. Resentment which I hide, because here were the three people in all the world to whom I have a real, proper responsibility, and whatever is happening , however much pain I'm in, I will fulfil it to the best of my ability.

So. My IC is not getting better. It just isn't. I may have better days and worse days, but the bottom line is that it's here and quite possibly it's here to stay. I have found the idea of accepting and dealing with that very difficult indeed. I hate being in pain the whole time. I hate my waking hours being dominated by my bladder. It's not meant to be this way at 35. IT'S NOT FAIR.

At 85, I'd settle for my bladder ruling my life. At 65, it would be harsh, but at least I could say that I'd lived. But not now.

And because I am raging against the death of 'normality' in my life (it's been almost a year now, and no medication that has worked has been forthcoming), I am still angry. Of course I am still angry. Wouldn't you be? When I saw my ex the other day, I realised how angry I still am. If he'd cleaned his bloody boat, I never would have got ill in the first place and I would not be ill now. He does not care, he is not sorry; he does not even know how I am now. And if he did, he wouldn't give a flying fuck.

Some people would say it's that anger which is keeping me stuck, keeping me ill.

The vicar told a story about some lepers who were healed by their faith.*

Maybe I just need to have faith.

But unfortunately, it seems to work the other way. The longer this goes on, the longer my bladder stays raw, red and inflamed, and dominates my waking hours (and sometimes my sleeping ones), the more cynical I become about this whole joke of life and the less faith I have.

That's the honest truth, the uncensored version. The truth I keep to myself. Life seems more and more pointless the longer chronic illness and pain goes on. Which is, I suppose, why clinics exist in Switzerland for people who have had enough of maintaining the facade.

I can't think about that, though, because I'm a mum first and foremost; so onwards we go. Giving up is not an option, I keep reminding myself, it's just not. So I take the painkillers; I get through the days; I cross another month off the calendar....

But the medical system has thrown me to the wolves, at least for now; and nothing is changing.


* (he did say that in the Bible, 'leprosy' is a general term for any skin disease, so maybe they just had some acne and Jesus knew of some good face cream..... see? cynical!)