Life, 2 hours sleep and a road trip to the new hospital

Let's get this straight. Life is not like a box of chocolates. It is certainly not a bed of roses. It is not even an uphill struggle. It's a bloody joke. A sick joke.

Sometimes I think instead of a god or some 'higher power' there is some messed up joker up there in a batman suit watching us all beetle around our little anthills living out our daily dramas which seem so desperately important but actually mean nothing, and he is laughing and laughing at our misfortune. We dash around like headless chickens and then we die of old age, illness, car crashes, plane crashes, Ebola (massive respect to Bob Geldof, my hero, by the way) or whatever else happens to waddle along to finish us off, and it was all for nothing. 'A tale, told by an idiot, full of sound and fury, signifying.... nothing.'

Apologies to those of you who say I am funny. I would love to make you laugh but I am actually quite depressing at times. I think these thoughts are born of having 2 hours sleep between 4.30 and 6.30 rather than any deeper psychological disturbance, at least I hope so....

I am in a lot of bladder pain at the moment and keep having these spasms where literally I cannot pee even though I really need to, which is scary, as apparently the mast cells have invaded my detrusor muscle (sorry, technical talk; the muscle that you hold in your pee with).... There is some therapy that can help which my consultant is applying for. In the meantime, it is Diazepam all the way. Plus my usual cocktail of painkillers. Although am persisting with the Elmiron . Despite the fact that it makes me feel sick and my hair fall out. The hair loss is manageable and the nausea I am so used to I have forgotten life without it..... I am happy to lose all my hair if my bladder recovers. I took this decision so it doesn't bother me and in fact nobody else but me is noticing as it is not very obvious.

Am now into month 4 of Elmiron and have heard of people who had to take it for over 6 months before anything happened so I hold out hope. One woman told me after 8 months of nothing, she was about to give up when it just magically started to work and she is now almost pain free . As it works in a third of IC sufferers, it is worth persisting, I think. Actually one thing is changing, I am getting up at night less to go to the bathroom. But that could just be because I am awake more; or because I am taking tranquilisers due to the bladder spasm.. But I think it may be different. The night before last I slept for 6 hours straight. This has happened a few times lately, without a sleeping pill. for me is something of a miracle. We shall see. My new consultant said to watch and wait and reassess in February when I may start more invasive treatment.

So I got two hours sleep because of crazy bonkers emotional dramas going on here which I just do not need. Too private to write about even on here, as I just don't know who may read it. Suffice to say that some people are emotional vampires who drain your energy and suck your time and make you feel like you are losing the plot, and they do this regardless of how you are feeling, and I just want ALL of these people GONE. The trouble is, their roots are very deep in my life and it is hard to weed them out. I love several of them. But the dramas are keeping me stuck and keeping me ill. I was having a panic attack at 3am. This is no good for me or the kids. Thank you to those friends who were there for me last night. Sorry if I worried you. I would say it sounded worse than it was but that would be a lie. I honestly don't know what I would have done with you. Caveliere, grazie mille.

I am driving later to the new CLEAN hospital (I just can't get over how clean it is after our local hospital, which resembles the less pleasant hospitals I have encountered in India; the room where they do the catheter treatments is like a private hospital with pictures of soothing moutainsides and waterfalls - waterfalls??! who designs these places??! - and floors which sparkle as if they are cleaned every hour) for a focus group with other people who suffer from chronic bladder disease.

I really hope it is worthwhile as it has been a huge hassle to sort out who is looking after the children. As usual like juggling with sixteen balls and dropping several all the time. As am not on speaking terms with mum still it is even harder. But thank the lord for good friends and neighbours and fellow school mums plus a decent childminder three times a week after school. Who drives! Pre Pubescent Beauty has her first hockey match today (but mummy WHY can't you come? WHY? You are not a mother!!!), Blue Eyed Boy gets out of school at the very time that I have to get on the road and then has a piano lesson to go to in a different part of town from the hockey match.... But I have organised it all and at 3.15 come what may I am leaving for the hour and a bit drive, the two hour group, and then the return journey.

I am nervous about the journey, as have not done it alone so far; always with dad or a friend, and we have always got lost; and am nervous about the group as have met so many people online with IC but not one person in real life in 27 months of illness. What if they don't feel the same way as me? What if they are all really dull and quiet? What if they think I am really weird and loud? What if they are all much much better at coping with it and think I moan too much? Worse still, what if there are only three of us there plus five psychologists and six urology nurses and it is two long hours of custard-cream-eating awkwardness when I would far rather be at home watching Eastenders with a hot water bottle and my cat?

But we have to try. I have to try. I really am. Trying, that is. Best foot forward. Can't you tell?

xxx