much better than expected

So the appointment with the Big Cheese went much better than I could possibly have hoped.

But the NHS Urology Clinic at our local hospital is a depressing place to be whatever your situation.
Particularly when you arrive with an empty bladder, having just made sure to pee behind a tree in the park on your way there (and no, I'm not ashamed; lost that ability long ago; and it's easier squatting down right now to be honest; don't think anyone was looking except perhaps a local perv or two) to avoid the dirty hospital toilets, only to be told 'hope your bladder's nice and full , darlin, you're doing a flow for us today'. 
 What this meant in practise was drinking 8 plastic glasses of hospital water, to be escorted into a makeshift 'flow room' (backroom toilet), where I was then instructed to pee into a kind of metal machine, followed by an ultrasound scan. As I had to wait at least 5 minutes for the scan, I asked if I could pee again before the scan. But there was still 12ml residual in my bladder (I was told anything under 100ml they don't worry about, but still my mind is whirring around it now, as I had peed again so what if there was more if I hadn't.... at the time I was not worried but now I'm worrying.... just the way my mind works..... ).

We then went in to talk to the consultant; me really tense, flanked by my lovely friend whose main job was to keep me calm. I was all set for another conversation about how Elmiron isn't licensed in the UK and its scientific benefits are not totally proven etc... only to hear my consultant say 'well, I've done it; I've jumped off the cliff - I just thought, sod it'.

Strange words, perhaps, but I hadn't driven him to total desperation; on the contrary he explained that he had in fact requested a discussion with his head of department at the Urology Clinic, who is in charge of finance, and they'd decided between them to put in a request on my behalf to trial Elmiron for 6 months.

This is a big shift from where he was standing even a week or two ago. It means that I am in with a chance of being allowed to try a drug which just might, just might really help me. It doesn't mean that the Health Trust will say yes. They might say no. I might still have to get another opinion, go to another postcode. But it means a chance.

And it means the world to me that he is taking my case seriously enough to do this for me.

I'm going to write and thank him. (Oh, and ask him about the residual urine too!)

screw my courage to the sticking place

So I'm off to see the Big Cheese, the consultant who did my rigid cystoscopy with hydrodistension , who diagnosed me with this bloody disease in the first place.

We are currently at what would be a stalemate were we playing chess, because I want him to prescribe me Elmiron (if you know about/suffer from IC, you'll know all about this; if not - well it's complicated and I have only 5 minutes but in a nutshell it's readily available in the US but only on a 'named patient' basis over here, it helps about one in three who take it by replacing the fucked up GAG layer of the bladder which is apparently what causes our pain. it can also make your hair fall out, amongst other things, so not to be taken unless you're desperate. and it's expensive. it's next on my list). He, unsurprisingly, does not want to prescribe me Elmiron. He has sent me complex boring emails from the grotty hospital pharmacy explaining why not, but he could petition for it, if he believed in it, or me, enough.

He doesn't.

The upshot of this is that I'm going to have to change consultants and I do have another one in mind but I don't want to totally blow it with the Big Cheese (large man; constant slightly unnerving smile; big patronising to us 'little ladies' with 'waterworks' issues) in case the other consultant doesn't work out.

So. I have to smile, and be assertive, and not lose my rag. Make my points calmly. Not be bullied. Not shout.

I have to not be passive and not be aggressive.

I HAVE TO NOT CRY.

I'm taking a dear friend which is a blessing but she texted last night to say she needs to leave less than an hour after the stated appointment time... so this being the good old NHS, I'll probably be going in on my own. That's why I'm still in bed, typing this, when I should be up, dressed, and on the road.

Wish me luck.

My Luck: my Pre-Pubescent Beauty and Blue Eyed Boy

My children. Pre-Pubescent Beauty and Blue Eyed Boy. Hereforth known as PPB and BEB. I will be talking about them both a lot in this blog, because they're central to my life. She won't stay pre-pubescent for long, but his eyes will always be blue...

Now I know every mother in the world (well excepting the few that murder their families, or bugger off to Magaloof leaving their 5 kids with the local teenage childminder, or drive off a cliff with the whole family in the car, but probably even including them because love is a strange thing) is proud of their children. Every mother secretly thinks her own children are more intelligent, more beautiful, more cool than the other kids on the block; it's a kind of vanity, really, because, of course, your children are 'half' you. You see yourself reflected in them like a warped mirror; you see your daughter's beauty and remember how you looked twenty years ago; you see your son's stoic determination and you remember how you manage to clench your own fist and get through the days.

In my case I think until a year ago I took them for granted, a bit. Of course I had those moments of complete joy - when they open their stockings on christmas morning, when you surprise them with an adventure they had no idea was about to happen, when they turn around and give you a kiss for no other reason than 'you're the best, Mum'. But I took it for granted that they loved me and I loved them and we were a happy, if unconventional, family unit, with our ups and downs but basically doing ok.



our lives have changed whether we like it or not

But a year ago everything changed for me when I became ill. And my relationship with my children has changed too; shifted; and I will never, ever, for one moment, take either of them for granted every again. They have had to adapt to a reality in which neither of their fathers is nearby, and their mother, aside from being a bit of a fruitcake to start with, is suffering from a serious chronic disease which they can do nothing about and which they are forced to stand on the sidelines and watch. However much I try to make things 'normal', they're far from normal.

Blue Eyed Boy takes it all harder. He wants me to dash around the park with him with a football like I used to, he wants me to have my energy back. He can say quite hurtful things without meaning to, and I have to run to the bathroom and lock the door and wait 5 minutes before I can re-emerge without being in floods of tears. 'I liked you better when you weren't ill', he'll say. Or, out of nowhere, 'what if they never find a medicine to help your insides, will you feel like this forever til you die?'. Or 'will you be better by the time I'm sixteen?'

Pre-pubescent beauty has, rather wonderfully, adapted to my illness by assuming a newfound sense of responsibility. Which is not to say that it hasn't been hard for her - it really has. But she will quite happily make breakfast for her brother now, and when not screaming at each other that they hate each other (which is occasionally - like in every family I know of), the two of them have become very close. They look out for each other. They are in the same boat, and I'm in it too.

I feel perpetually guilty, of course, because we're in a situation that makes them sad and it's me that is causing it even though there is nothing more I can do other than what I'm doing. But emotions aren't logical; and lying in the dark at night it is the tentacles of guilt that reach out to wrap me up in 'what if' and 'if only' and 'why can't'.......

Like every Mum, I want the best for my children. I am fighting so hard to keep going, to keep my boat afloat, to keep the show on the road, and my two little ones are my reason for fighting.

The other day in the doctors surgery she asked me how I felt.

I said I can't tell you - you're a doctor.

She said you can tell me anything you like.

We go back 5 years, she and I; and she knows me pretty well.

I looked her square in the eyes and said that I wouldn't see much point in going on if I didn't have my PPB and my BEB.

She didn't look surprised, or worried. She said in that case, you're very lucky. You're a great mum and you'll get through all of this because you've got the two of them.

And I hadn't thought of it that way. But of course I am. If I had Interstitial Cystitis and was in this much daily pain and all I had was the Jeremy Kyle show, a packet of chocolate digestives, and maybe a smelly dog on my collapsed sofa for company, I wouldn't rate my chances.

But I have these two beautiful rays of light.

One day I will (I hope) have grandchildren. One day I will (I hope) be telling my grandchildren about all of this, sitting back in my chair and remembering what these dark days were like and how my two lovely children cheered me through them.

And I will watch my children leave childhood behind; go through all the same rites of passage as I did (less bumpily, I hope, though in PPB's case I think that's unlikely); I will watch them grow into adults. We don't own our kids - they leave us, in the end - but if you bring them up right they never really leave you because you all love each other much too much for that.

I will carry on doing the best I can do for them, because it is all I can do; and in doing the best for them, I am also saving myself.

Lucky for me that I have a reason. So if they squabble sometimes about who is in charge or who's done what to whom, I need to stop, breathe, take hold of their little hands, and remember that it is our love which is stronger than illness, than pain, than suffering. It is our love which will pull us through.

why I didn't become class rep

So at my children's primary school, the best in my Provincial Town where all the schools are Good but some are more Good than others, every year there is a class rep. The class rep is responsible for organising social events, coffee mornings, christmas and summer fairs, and generally keeping things going.

After I'd been ill for around six months but was stabilising on medication,  I thought that being class rep for Blue Eyed Boy's class next year would be a good idea (it was actually a crazy idea, but then I was on a strong morphine pain patch when I thought of it, so don't blame me).

So I volunteered. Then I kept changing my mind. Then I said yes again. I wanted to do something to get back into the middle of things, to remain involved in school life but also because I missed half of his year 1 due to illness. Close to the centre of the boat, and all that. I've never been 'popular' and I don't give a flying fig about that, but I'm good at organising things and people and I thought it would be fun.

And now I've said no, finally, in an email to all the oh so yummy school mummies. I've suggested that maybe a few people could share the role. The woman who did it last year is a highly ambitious, vaguely repressed 40 year old who should be running a merchant bank rather than the social events of a primary school class, but perhaps she'll do it again. No responses as yet. Most of them have time, energy and health on their hands but probably too many manicures and gym training sessions to get to; the nice ones are genuinely juggling work, kids and sluggish husbands and the idea no doubt sounds a hellish addition of responsibility to them.

To be honest I am dreading even the prospect of getting the children to and from school / clubs / activities ... I've enlisted my friend to take them to school two or three mornings a week and collect them two days a week, just so I can conserve my energy... I'm dreading having to take my walking stick to the school gate if things get really bad again (after my operation in April, the look on my children's faces when I had to take my stick to school was enough to break my heart - the mix of pity, fear and embarrassment)...

So how the hell can I take responsibility for co-ordinating the whole class - and why should I?

It was a bonkers, overambitious idea, and in Devon I decided I had to pull out.

I'm not regretting the decision, but I'm upset about it. It's something that if I was healthy I could do standing on my head - at my Oxford College I co-ordinated the women's junior common room, inviting speakers including P.D.James and Jo Brand to come and speak to over a hundred women at a time. I think I could manage a few pizza nights and tombolas.

It just makes me sad , because it highlights how little I can do. The only thing I can do, really, is sit here and write. And maybe that's exactly what I need to be doing.

dreams of flying

sitting at the circus with my PPB (pre-pubescent beauty) and the acrobats are flying across the stage, looping in circles, to the 'ooooohs' and 'aaaaahs' of the crowd, showing and knowing no fear.

my daughter is intoxicated. she would love to do this - and is so flexible and daring, she most probably could and can , if she sets her mind to it.



i drift into my recent dream of flying. i'm at my bedroom window and i want to jump. but not to die. although i might die - i'm not sure. but at that moment, i just jump.

it's the moment, the moment where the fool steps off the cliff in the Tarot, T.S.Eliot's 'awful daring of a moment's surrender, which an age of prudence can never retract', it's in that moment that we are alive.

and in my dream i jumped.

and i flew.

and there was no pain; no anxiety; nothing to organise; nothing to suffer. nothing at all, in fact, except the sun, the birds, the wind, and me.

there was nothing left to feel except a mild exhilaration

and a pure, pure emptiness and peace.

has my anger made me ill???

so i remember reading in Louise Hay's 'you can heal your life', when my life didn't really need healing and health was a luxury i took for granted, that cystitis means you are literally 'pissed off' with the world.

i thought this was vaguely funny at the time, just because it is so ridiculously literal.

when you are healthy, you can afford to laugh at things like that.

i was reading the book on behalf of Sleezeball, hoping to help cure him from a chronic ailment and thus earn his undying love and approval (that one didn't work out so well). but a conversation with a friend just now got me thinking: has my anger made me stuck? is my bladder red, raw and swollen because it is, actually, angry?

and if I can forgive this man for what he has done to me, taking away my health, happiness, energy as a mum, vibrancy, social life, enjoyment of my life,  and even more seriously what he has done to my children, taking away the mum who is their rock and reducing me some days to someone who can barely walk up the road and is terminally moody because in so much pain and discomfort... if I can forgive this shit, will i get better?

so how do I begin on the road to forgiveness? where to start?

in my book, there are some things that are simply unforgivable. and to infect someone with a disease which then ruins their immune system, destroys their life and thus their children's lives in the process, and to waltz off into the sunset to look for their next victim. well - that strikes me as one of them.

so - fuck. how can i start to think differently?

a year ago...

was when it started to go wrong.

I thought I was drowning in love. The man in question, Mr Sleezeball, an ageing writer with a false air of relaxed deliciousness, liked my company , liked sleeping with me, liked the exciting parts of me and my spontaneity but was resolutely refusing to commit anything at all except the 'beauty of the present moment'. He was always leaving the room it seemed. Always had somewhere else to be.

So I was getting thin. I was getting desperate. I was smoking roll ups and drinking black coffee and had turned vegan for some reason I now forget and we trapsed off on a disastrous holiday to France, him and his two oversized, over-volumed boys, me and my two beautifully full-on little ones, where he became so ill the 'holiday' was dominated by his bloody diareahha. I ended up looking after four children, whilst chasing round chemists in the south of France searching for obscure medicines and scouring restaurants for 'une omlette, s'il vous plait.' I always said it was for my husband. It sounded better that way. We'd hired a car, which he'd assured me he would drive, but I ended up having to drive it, and I scraped the wheel, and we were screaming at each other about the insurance, and the last straw came when I asked him on the ferry home to reassure me that nothing had changed between us and he just looked at me and said 'our relationship is what it is; that's why we're having counselling'.

Which we were. We'd been having counselling since 6 months after we met, which should have told me something. I am Very Stupid when it comes to men.

And then a week after our return, I sat down on the toilet, stood up again, and the entire toilet was red. I thought my period was early, but it was blood from my anus. I thought I was dying, haemorraging. We rushed to a&E. I was there for 2 and a half weeks in the end, in isolation, in a dirty smelly NHS cupboard hastily converted to a 'sideroom' by the addition of a bed and a 'commode' and strict instructions not to leave the room in case I contaminated others with the diagnosed Cryptosporidium, caught from Sleezeball's dirty canal and/or boat. They also found my stomach in a terrible state of inflammation.

Mr Sleezeball visited me twice, in those 17 days of hospital. Soon after I was discharged, he 'dumped' me. Because love , after all, is letting go.

And after a few weeks of crazed semi-anorexic heartache, my bladder suddenly took on the anger. It's been the same ever since.

I have been ill for a year. It will have been a year on September 12th.

Please please please god buddha mother universe if you are there , please just make it go away. I just want my life back. and as for you, Mr Sleezeball - bullshitter - womaniser - good time guy..... I hope you rot in hell.

'holiday' depths

Day one: So we got there late the previous day after a long drive and unpacked. Lovely to be in Devon, as ever. Hoping for a long refreshing sleep and less pain due to refreshing sea air.

Instead, my blue eyed boy wakes up at 6am. My pre-pubescent beauty of a daughter shouts at him to go back to sleep. He won't, claiming he has woken up 'feeling like P Diddy' and what is he meant to do about it. I'm in so much pain I can hardly move. On my advice at 6.45am they run upstairs to 'make breakfast', weetabix and milk poured randomly into bowls and sloshed in front of the tv in the cottage i'm trying to keep all neat and tidy and spick and span. Bearing in mind that the drive down nearly killed me I'm finding it hard to surface. When we all do, it is raining. We manage a quick walk on the beach and a pub lunch intersperced with my seven trips to the toilet then go back to play board games.

Day two: It is beautiful sunshine. We make it to the beautiful beach and the kids play in the sea and blue eyed boy catches shrimps and shows them to me in wonder. Beautiful wild daughter on her body board in the waves for hours. I have managed to carry a deck chair down the path and I sit in it reading my PD James book. It's the closest I've come to peace for a while.

Day three: More fights and squabbles in the morning. More stomping above my head (it was an 'upside down' cottage, so my room underneath the living room). More shouting. More worrying that the landlady next door running the adjacent B&B will ask us to leave. So we go out, me taking double the amount of painkillers that I should, we go to a local little town and buy a few things, we go to another beach, it should be nice , but the day is overshadowed by emotional clouds and we're all tetchy. Kids won't settle to anything; everything is wrong.

Day four: We go to a working farm nearby, which the kids usually love. We've had idyllic days there before. And this wasn't bad. Baby rabbits, goats, mice; miniature pigs; ferret racing; meet the hedgehogs (not top of my list, but the kids liked it); a little train; tractor rides..... Pond dipping at the end of the day and then my lovely girl tips my lovely boy's bucket of pond debris back into the pond because she is angry with him. More shouting. I walk out, straight through the shop; not a popular decision. I feel unbearably sad.

Day five: I decide I can't get to day seven like this. There is just too much noise and stress and without another adult there and with so little energy I'm just failing to manage. I spend the morning packing up and cleaning the cottage. Blue eyed boy helps me a bit when he feels like being strong and carrying bags to the car; pre-pubescent beauty mostly lies on the floor, kicking her gangly legs in the air, reading a complicated Guardian article about the pros and cons of Fracking. We go to say 'goodbye' to the sea but end up staying all afternoon. I even end up in the water. and here I am not in pain. Magically. I look out and all I want to do is keep swimming, outwards, beyond the boats further out in the bay, towards the horizon; keep on swimming until I am too tired and I slowly sink to the mermaids. 'Mummy', calls my little son. 'You too deep. Come back!'. I don't want to come back, but I do.

We arrive home at 11pm. I stop to sleep in a layby for an hour on the way and drink a bottle of coke bound to cause me immense bladder pain the next day as simply cannot stay awake. I carry my two sleeping beauties into their beds and tuck them in. It takes me til 1am to unload the car.

Day six: Sleep. Unpack. Daddy number 2 comes to pick up Blue Eyed Boy and is remarkably and uncharacteristically civil, nice and sympathetic. My lovely friend comes over bringing me flowers to talk about doing some childminding work for me despite having just got a full-time job til Christmas. Feel extremely grateful and loving towards her.

Day seven: Sleep. Play boggle and 'the shakespeare game'. Help my girl with her maths, Non verbal reasoning and music. Talk at length with my stormy soulmate about his various dramas and our possible routes forwards sideways or round in circles. Tell him I love him and listen to him repeating the same and wonder if it will ever be enough.

Lie in bed drinking valerian tea and thanking God the day is over. Take more painkillers. Take more tranquilisers. Wonder how I will get through tomorrow.

tell your baby sister not to do what i have done

i can't help thinking right now that i am being punished.

but for what i don't know exactly.

only that people keep on saying 'oh you're having the worst luck right now' , or 'isn't fate dealing you a raw hand'.... and i don't think it's that at all.

i think it's karma, for something.

i was owed some real proper overwhelming suffering, and here i am in the middle of it, trying to endure it, not knowing how much longer it can actually be endured, and wondering why me, why me, why me, and why me why now when i have these beautiful children to care for it IS NOT FAIR NOT FAIR NOT FAIR

 

 

 

 



I PLAN TO SIT HERE ON THESE ROCKS AND ASK AND ASK AND ASK WHY ME WHY ME AND PLEASE CAN IT STOP NOW

see you in a week. not taking computer with me. seem to be taking every other conceivable thing as making decisions impossible right now so have just packed everything , including the kitchen sink, but am very definitely leaving my computer here. and as there is no mobile reception where we are staying, i'll have some time for introspection away from screens, which will be good.

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.

put your bloody dog on a lead

Usually I agree. I'm always giving my heart. Cutting it open; slicing a piece off. Take it - I don't need it - let me listen to you - let me help you - let me look after you - especially if you're a scumbag.

But I did the opposite today.

I gave a piece of my mind to a Provincial Dog Owner in my Provincial Town, while we were out having picnic in our local park.

'Is that your dog?', I asked. 'Put him on a lead right now. My daughter was bitten by a dog the other week* and your dog is roaming around scaring little children'.

'Oh, I can control him from here!' she said stuffily, pointing at a distance of 100ft or more.

'I don't think so,' I said. 'If he were to bite someone right now, what exactly would you do? And have
you heard about the new laws on dog owners going to jail if their dogs kill children? Incidentally, can you be sure he is not defecating, from that distance?'

And so we continued for a few minutes. Maybe I was a bit harsh, but the dog, although small and probably harmless, was panting, crazed, and roaming around making children leap into their parents' arms (mine included).

So she put the dog on the lead in the end, scowling at me and telling me we'd be better off having a picnic in a park where there were no dogs (as if we could find one). I told her we both knew she was wrong, and she'd better apologise, but she didn't; nevertheless the encounter left me strangely energised. I had protected my babies; I had fought a battle and at least not lost. I had engaged with Provincial Dog Owner and at least not lost the battle.

Giving a piece of your mind is sometimes much more satisfying.

 *note to reader - it was not severe and she was under her father's care at the time - not that it was his fault either - I blame the dog owner ;). He did then prevent me from speaking to the medical staff treating my daughter which has led to a huge fall out, but that's another story.

Introducing my fucked up bladder and Mr Sleezeball

so why now, after a thirteen hour day non-stop looking after the kids, thinking about their needs,going at their speed, taking them from park to tennis lessons to my doctor's appointment ('I won't be in there long, see what you can build with these cool brick things by the time I come out') to library to my stoic half-blind Grandpa's, where I care for his needs too, thinking about all their needs, running on empty, trying to hide when I need the toilet ten minutes after I've just gone because I don't want my kids' lives to be dominated by my inflamed and angry bladder, trying to hide when I am in such pain I just want to double over and cry because I just cannot see the look of pity and disappointment on my children's faces when they should be having a lovely day.....

why now, after hours and hours on the move when I have succeeded in giving those I'm responsible for a 'good' day, when I want to be still, do I want to write this? 

Usually I just watch TV.

It's partly that I've given up alcohol and caffeine as part of my bladder-friendly diet, so I feel much more clear.

Maybe it's helping a bit; maybe it just isn't hindering. They are good things to give up, anyway; being as addictive a character as I am, and on so many different narcotic painkillers and other hardcore prescription drugs that it would take a saint to not become addicted to, it seems stupid and foolhardy to be hooked on more things than I have to be right now. Plus, when I drink wine or coffee, it physically hurts inside my bladder, so I can't justify it.

It's partly that I am so depressed and low that I just need to get it out somehow.

But that in itself is strange, because although I define myself as a writer, I used to write for a living, I did an English degree, I wrote diaries avidly ever since I could write, despite all of this - I have not written anything more than a text or an email for a very long time. Several years. And for much of this time life has been wrong; or let me put that the other way around - only for a few brief moments or phases of my life has my life been really good. Mostly it is either bearable, but fairly bad; or really bad, virtually unbearable. So it's not like things are suddenly bad now, and that has led me to want to write. Things are usually bad, and usually now I do not write.

Because chronic illness is so isolating, I want to talk about it, but I find it very difficult to talk to my friends and family about any of it, and I find it so fucking depressing ringing the Samaritans (why can't they give you proper advice when you need it? I always ask them for it, just to test if they're playing by the rule book. They always do. They never offer you an opinion. They only listen. I'm not knocking it. Like Alcoholics Anonymous, another organisation I have had reason to make use of in the past, it is fantastic that they exist at all. I just wish that sometimes you could have more of a laugh with them).

So - no late night phone calls to the Samaritans. No late night phone calls to my friends. No phone. Really not liking the phone at all. I start sobbing, and then what?

Ok. Here's the thing. I have been ill for eleven months. Solid. And when I say ill, I am talking properly ill. I've always been a hypochondriac and a drama queen, so I'm fairly sure that at least half of my circle of friends and acquaintances think that I make it out to be worse than it is, but I really don't. And I really don't feel like going into all the minute detail right now - maybe I will in another post soon - but here's some of it at least.

Introducing Mr Sleezeball. You'll hear a lot about him, as I'm still 'processing' it (I always wonder exactly what that means, as we're not made of cheese, but that's what I'm doing). So I broke up with Mr Sleezeball last autumn, after almost a year of candy-floss castles in the sky, mediocre sex (on my part; on his part it was the best he ever had, which I find gratifying and yet so depressing for him) and pseudo hippy bullshit about love meaning letting go (much, much more about him and all of that later on), having caught a nasty parasite from his canal boat, or the water surrounding it, and I got really sick.

Having been a vegan last summer anyway, I quickly lost 2 stone in weight, I was bleeding from my arse, I was put in isolation in hospital, my stomach was inflamed with 'snakeskin gastritis'.... I could feel the tentacles of blackness reaching up to engulf me..... It would take me three hours to eat a banana. It would take me ten weeks before I was remotely back in the real world.

Then quite suddenly, when I started to heal from the acute illness and the sudden break-up (he left me, because it was all too difficult and because he had never really loved me in the first place, and it stopped being fun, and he is no kind of gentleman who would not leave a lady in distress), suddenly these severe bladder symptoms started. Somehow the inflammation had spread from my stomach and bowel to my bladder, and it was here to stay.

If you're female, and I say to you cystitis, or a urinary tract infection, there's a good chance you'll know what I mean. And perhaps if you're male, and have any trouble with your prostate. Well, I've had UTIs in the past, and that's what I assumed this was. So I took an antibiotic, but it didn't go away. Well, my immune system was down, no big deal, everyone kept assuring me, so I was given another antibiotic, and another , and another.... This went on for months. No change. Constant agony; a feeling of burning deep inside me; constant feeling of needing to wee even when I just had; I may as well have been living in the bathroom. On a bad day, these days, it is this bad. On a good day, some of the pain and desperation is masked by various medications. But it is always, always there. It never has gone, except for when I'm asleep or sometimes in the bath or occasionally on the sofa with a hot water bottle on my tummy and something engrossing on TV; it has never gone since the day the symptoms appeared, nine months ago.

I was referred to a urologist who eventually did a cystoscopy and diagnosed me with 'Interstitial Cystitis'. What this means is frequency, urgency, and bladder pain. What this means is antihistamine drugs, nerve blocking drugs, morphine based painkilling drugs, blank stares, exhaustion, isolation, crippling discomfort, stopping the car in a traffic jam to run out to find a toilet because I just cannot wait, drugs, drugs, a consultant who freely admits he does not understand what he is dealing with .....

What this means is I am my own doctor, I am my own advocate, I am my own best friend. I am fighting at the moment for the right to take an expensive drug, the only one licensed by the FDA for Interstitial Cystitis, called Elmiron, which is given as standard in the USA but not over here, mostly because of cost. It can have hideous side effects, such as hair loss in patches, and yet I am campaigning to be able to take it, because I am desperate. The next thing after the oral drugs are the catheter treatments - weekly in the hospital - which I cannot yet face physically or emotionally.

And I am still a single mum, of two small children, and I am still their rock, their home, their safety. I am stretched so thinly I fear I will snap.

And yet I look 'well' now. 'How well you're looking!' people exclaim, ignorant of the fact that I want to punch them in the face for their lack of sensitivity. And yet how should they know? It's an invisible disease. Nobody can see the inflammation and the allergic cells in my bladder. I look ok. Most of the weight has come back and my smile has come back and I try and I try and I go through every day just getting through what needs to be done and I find I can just about look after myself and my children, and our household, our food, clothes, shelter, laundry, shopping,...

I can just about cope, but there is nothing else left. I cannot sustain any kind of proper relationship and I cannot even contemplate 'working' (as if being a full time mum isn't working!!!).

I am exhausted, completely exhausted. I am in my own personal hell (I'm going through hell, I tell myself, so just keep going).

I collapse into bed at the end of each day and I have to drag myself out of it in the morning. I try so hard not to wish that I just didn't wake up at all.

save me from being blown forever outside the loop of time

So I confess. I don't know how this works. I have never written a blog before. I don't know how to see who has viewed this page, how to spread it in public; how to remain anonymous. I tended to think blogs were a strange medium. Why bother, I thought? Who would write a diary in public?

But now, I crave a space to be anonymous, and yet to be seen. To be me again. Not to be mummy, daughter, crazy sister, loving grand-daughter caring for my near-blind grandfather as he sees out his final months or years. Not to be friend, lover or smiley acquaintance. I crave a space to SCREAM if I need to , to tear my hair out, to mock the idiots who have waltzed through my day shitting on my parade; or just to be quiet.

Virginia Woolf called it a Room of one's Own. I haven't read any Woolf since I left university, but I've been living her truths. Her voice gave credence to the circular lives of women, our lack of straight lines; our contradictory needs for reassurance and independence.

We cannot help but be defined by our men - for me it is my son, my father, my brothers, my ex-partners, my co-dependent soulmate. We coil ourselves around them like snakes, we compete for them; and yet really how we long to be free. Really, there is a force stronger than sex. Really, we are foam on the ocean, stardust in the night sky.

So perhaps here I can reassure myself and emerge again, slowly, through the power of words, from my daily chaos. 'The world is entire; and I am outside of it, crying 'Oh save me, from being blown forever outside the loop of time!' Rhoda in 'the Waves' - she is too fragile for this world. Like Amy Winehouse, or Sylvia Plath. I worry often that I am like this. But I cannot die young; I have two children to cement me to this world; I want to see my grandchildren; I want to keep on breathing breathing breathing .

And here, in this blog, I want to just be one voice, crying out if anyone is listening that she is lonely, trapped, suffering, waving, almost almost drowing, clawing her way through the half-formed days, doing her best which never ever seems to be good enough...... and that if you feel that way as well you are not the only one.

So this is me

So this is me, the middle of the night; it could be any night, but it's Monday. I'm in chronic pain, as usual for me these days, and I know I will wake early with the kids but the chaos of today is stopping me from sleeping. The other day my brother and I were chatting. How to impose some order on my seemingly dead-end life. We thought of a blog. While he's off saving the world, he seems amazed and mildly appalled that all I seem to have accomplished at the tender age of 35, following so much promise,A grades and scholarships, a respectable Oxbridge degree, freelance work as a journalist in my twenties... is now two beautiful children, a string of broken relationships, and a serious chronic illness which renders me pretty much unable to do anything much except for drag myself through each day counting down the hours to bed.

So where to start, to claw myself back into the 'real' world? Why not start with this: the world I have got. Where I'm at right now, which is just about the polar opposite of where I hoped and thought I might be by now. I've always been vibrant, sociable, pretty, able to charm my way in and out of things, proud of being a single mum to my beautiful kids... and yet the last year or so has been so horrific I wake up every day still hoping it is all a nightmare and I am waking up to a life which no longer exists, without pain. So I'm starting here, right here, where I am, where it all begins.

Today my on/off partner, love of my life, fire of my loins (is that from Lolita? don't worry, he's in his forties), terror of my soul, co-dependent soulmate, revealed to me reluctantly that he had been telling me yet more lies, because it was 'easier'. More of that later. Baby Daddy no1 has sent me a text declaring he will never speak to me again because I am preventing him from seeing his child , just because a camping trip hasn't worked out the way he hoped it would - she'd rather stay at home with me. This apparently makes me into a monster who is withholding contact. Any day now he'll be on the ten o clock news in a Batman suit throwing flour at Cameron and co. My bladder has not been irritable so much as fucking furious. Pain levels high; emotion almost uncontainable. To put it mildly, it hasn't been a good day.

I did manage to mend a toy plastic rat tonight, though, but superglued my fingers together in the process (managed to un-glue them again with salt - it works, try it). Another half hour well spent.

Life is not technicolour right now, not even close. I live for my children, which I am not sure is healthy, in fact I'm sure it is not, but it's better than the alternative, which is giving up entirely. I choose to keep going, but anyone who remarks on how 'great' I look ('oh you don't look ill!') or how 'when it rains, you have to look for the sparkles in the rain', gets a squeeze of lemon juice in their eye from me. That's what I do when life deals me lemons. Fill up my water pistols with them and fire them at people. Metaphorically, obviously. I'm not a psychopath. I just don't like people who always try to fix things. Some things can't be fixed easily; sometimes you need to listen, not talk.