i should be so lucky...

My six year old and I were cuddled up together watching 'The Voice' last night and he turned to me very seriously and said 'Mummy, I have to tell you something.'

He hesitated as if he didn't quite know how to phrase it. 'You can tell me anything, sweetheart,' I said, slightly worried. He still didn't say anything.

'Well,' he said finally, 'I have been thinking and if you couldn't be my Mummy anymore , which won't ever happen anyway, but just say that it did happen, well...'

All kinds of things were going through my mind.

Did he still think I was at death's door?

Did he want to be living with my parents, maybe?

Has the continued absence of his arsehole father, who has not been in touch for weeks, really got him into a total state?

I muted the TV.

He reached for the remote and un-muted it straight back.

'No need to panic, Mum', he said. 'All I was going to say was if you were not my Mummy, I think, well, considering everything, I would choose Kylie.'

I looked at Kylie Minogue's young, fresh-looking face, at 43 or 44 or whatever she is. I don't begrudge her the botox and the facelifts and whatever else she has had done; the woman has been through the mill with her breast cancer and her failed relationships .....

And yet still, she is a Diva, and attracting a brand new generation of fans under the age of ten, who know nothing of Charlene on Neighbours, or Kylie as Gay Idol, but just know her as Kylie, the new, cool judge on the Voice, more cool, definitely more cool, than the very sassy Jesse J.

Go, Kylie!

But I won't be handing her my son anytime soon.

'She doesn't have kids, you know,' I said later on.

'Poor Kylie,' said Blue Eyed Boy. 'See Mummy, you're the lucky one really'.

be careful what you say

... because I've just discovered it's easy to find the IP address of abusive/nasty comments, and so report them...  I'm sure soon this kind of thing will become a crime, and reportable; when the law catches up with technology. I'm educating PPB about cyberbullying at the moment , and I do not intend to become a victim of it myself through writing a blog which is helping me and lots of others who are either single mums, or ill, or just enjoy reading my thoughts.

So if you have nothing useful, pleasant, interesting or civil to say, don't say anything.

but I LOVE comments: just not poisonous horrible ones.

topic closed now!!

my little pussy cat

... has gone to be neutered today :(

How we pondered over the rights and wrongs of this decision. But under our current circumstances it is the right and responsible thing; I just hope that we weren't too late - she is six months old already.

First I've been ill non-stop so kept having to cancel, then it was all set for last Mon but the vet announced she was going skiing! So then it was postponed AGAIN....

She was sooo cute this morning; she knew something was up.

My mum took her up in her basket to the vet's, who has promised to ring me if there are any problems.

Bless her. Had to be done though. One kitten is hard work; six would be insanity.......

Still really upset over my evil blog reader last night. Hope he/she/it has moved on to read happy blogs about how the world is all beautiful and wonderful and there is no illness or pain or sorrow or climate change sinking our country... and everyone is happy happy joy joy and isn't life just so bloody great.

Toxin

I am happy that so many people have already read my last two posts, but I just received my first ever instance of cyberbullying. I haven't posted the comment; I have the option to moderate or delete.

I have never done this before, because it goes against my principles, but this post was just pure poison: 'you are moaning, why not ask others about their lives, people don't like people who moan, no wonder everyone has left you,' and that's me putting it really, really politely.

It gave me a shock - that I am not writing a diary - that not everyone reading this is reading it sympathetically.

So let me make this crystal clear.

Firstly I think I know who you are.

Secondly, whether or not I'm right, fuck you!

The internet is a big place.

If you don't like what I'm writing, don't read it.

Click a button; read something else.

If you have something productive, interesting, challenging to say; I would love to hear it.

If you want to get in touch about something IC or health related, or if you're a fellow single mum, I have loved hearing from you and will continue to welcome messages from strangers of this kind.

But kicking someone when they are down is bad, bad karma. It will come back to you tenfold, on top of all the other cold, bitchy things you've no doubt done ( and yes, I'm sure you were a woman).

It just means one thing: you are a nasty person. Accuse me of being bitter? Look in the mirror, lady.

Accusing me of 'moaning' after the week I've just had: well, perhaps I am, and perhaps I have a right to, and this is my space. My room. My blog. My readers. My choice.

You have no idea what it is to be inside my head; nor do you have any right to judge.

Go and deface a Tracey Emin exhibition; or burn some Sylvia Plath poems.

And then go and take your lovely, caring personality out into the world and stay away from me.

If I could block you from here I would; I can't, but all I can say is, if you don't like it, get the fuck out.

Nuff said.

absent and ex friends

On the subject of friendship, it has been on my mind a lot.

What does it mean?

and how do we react when our friends get very ill / have a breakdown / need help?

Two years ago, when I was with Fuck head, AKA Mr Sleezeball, source of my illness and first on my hit list (if I had one, which of course, I don't), I would have said I had ten close female friends. perhaps more. fifteen? some local, some in London, a couple abroad. perhaps even twenty. Sometimes I even used to count them (is that strange? oh well).

I remember Sleezeball used to say 'gosh you have a lot of friends, I only have true one' (yes, that should have been a warning sign, especially as this said friend's name sounded like a disease). I could have sworn that most of them would stick by me through thick and thin.

And then disaster struck. haemorrhage, hospital; permanent illness began.

And gradually, like rats leaving a sinking ship, my circle of friends began to disappear.

Some people unavoidably: two friends , and my favourite cousin, emigrated, all in close succession, nothing to do with me I hasten to add, but a blow nevertheless; and one lives permanently abroad so we've always been close but correspond mainly by email. the friends in London I can no longer see easily, so though they haven't 'abandoned' me, I miss them so much it physically hurts.

One friend just dumped me on the spot, because I was apparently sending her suicidal messages in the middle of the night ( off my head on morphine in the hospital) and she thought I was dramatizing and really not ill at all. She had the audacity to contact Sleezeball to ask him how ill I really was!!! She and I had always been turbulent; it feels permanent this time. I miss her, but then again, if that was how she felt, so be it. I hope she is ok.

One other 'close' friend - and these two were close, close friends as I thought - decided that I was far too needy, and that friendship should be free of any demand or obligation to help. She lectured me; she bitched at me; she slagged me off; she left me. I've written about her on here. I don't miss her, really. She is hard as nails, and not in a good way. Her view that you don't help your friends when they are down and out is very strange, cold and incomprehensible to me. I was very angry with her after everything I'd been through with her. But friendship isn't like that - it's not a 'deal'. You did that for me, so I'll do that for you. It doesn't work that way. It has to be willing, and she wasn't. I hope one day I will be able to wish her well.

And then some people just distanced themselves.... Rang less, emailed less.... They're still around, but not like in the days when I could sparkle . I don't sparkle anymore.

Some other friends and acquaintances, some of whom I really liked, I had made through a women's group. Sadly I had to let go of them.... Because one of them was totally horrible to me, and I couldn't work out the loyalties of the others... And there were some strange, witchy vibes around... I burnt my tarot cards, and I let those women go, in peace.

A few friends, however, have stuck with me like gorgeous beautiful limpets. Like stardust. My little Angel sister, who has stuck by me through thick and thin and made me know I am not alone; and another tough, wonderful, strong friend, who has even come with me to various hospital appointments (we've had our good times in the past, partying hard, and she always, always makes me laugh, even if I'm sobbing)... these two have been just totally amazing during my illness. They will always be there to listen, not judge; they help with the kids; they are practical; they don't pressure me. I love them dearly and I always will. They both have kids and all of them get on with each other, which makes it easier. They are also basically single mums, so they understand, as only single mums can, how hard it is, even if you're not ill.

Two other best friends have serious illnesses themselves which prevent them from helping practically but I know they are always on the end of the phone, and that hasn't changed. I know I will know them all my life, and I bear them no animosity for their absence: it's not their fault, just as my illness is not my fault. It's just how it is: we can't support each other much.

My lovely godmum of Blue Eyed Boy, one of my favourite people in the world, is abroad, having a fine time, living her life; I miss her desperately. Her beautiful sister, PPB's local godmum, is great with my daughter but we don't see her enough; she is so busy.

My siblings are all off doing their own thing - one abroad, two in London - and yes, I see them when they're back, but it's not regular. I miss them all a lot. I know they love me and yet I also know how frustrated they are with me. I'm their big sister; this shouldn't be happening to me; this shouldn't be happening to my family. I always feel there is some blame around, even if it's only in my head.

Other old friendships remain unaffected by my 18 months of ill health. There are some people I haven't seen for years but can text out of the blue and it's wonderful; if they turned up to visit, I'd love it.

I suppose it was the friendships that were very close at the time, the two in particular which happened so suddenly, which really hurt the most.

Illness really does put things into perspective and really does show you who is with you for the long haul and  who isn't.

And you couldn't predict it. If you tried to, now, if you made a list, I promise you that you would be wrong. It is not the people you think who either abandon you or stick by you. It is as much to do with them as with you.

And of course I've had to let go of the man I love, at least for now. That has been the hardest thing of all, perhaps. And yet it is right, for a myriad of reasons. But he is with me in my heart 24/7. That will never change, even beyond the grave. No abandonment there; just the harsh realities of life, my illness, his problems. I miss him like mad.

The one person I've wanted the most through all of this , my dear Granny, has been dead for over 5 years. I realise she was, perhaps, my very best friend, and I shall not look upon her like again. I hope she is watching over me, rooting for me still; but god do I miss her.

I try to practice gratitude for the people who have stuck around and I try not to resent the people who haven't and I just wish good things for the people who can't be with me for whatever reason.

How does the saying go: some people are with you for a season, some for a reason, and some for a lifetime?

I couldn't agree more.

how bad can it get: if you're squeamish, don't read this post

so it's a week on, and what a week....

Wednesday, Thursday and Friday I managed ok, until Friday evening I suddenly had a ferocious upset stomach with violent diareahha, which lasted all through the night, then on Saturday an episode of rectal bleeding, which can be anything, ranging from the mild to the fatal, but can also be a side effect of Elmiron. I then had a weekend of panic / pain / tears, punctuated by visits from various doctors and family members; the children went to stay with their grandparents, which was fine at that point as plenty of family around; and so on I went. They put a lot of pressure on me to be admitted as an inpatient to the hospital, but I resisted. There are no clean toilets in that hospital, and most of the nurses are total bitches.

On Monday I got in touch with my own doctor and consultant, to be advised to lie low, stop the Elmiron, do a stool sample, and let things settle down.

Yesterday, I went to do the stool sample and there was some more blood. However, after a second panic attack, I then realised my period had also at long last (after more than 2 months) started, so this second bleed may well have been menstrual not rectal. Impossible to know. I did two stool samples, which have been sent off for analysis.

I am also being referred urgently to Gastroenterology, which will mean, on top of everything else, tubes up my bottom and down my throat to see what could have caused the bleeding. I mean, in my mind it must have been the Elmiron, but the doctors say there is just no way of knowing without looking.

I am finding it very hard to stay positive.

I am crying all the time.

Blue Eyed Boy too homesick so has come back home to sleep nights; my lovely PPB being helpful and staying with my Very Welsh Mother, who has gone completely mad in the past two days and every time she sees me, shouts at me that it is my fault I am ill (go figure) and that I should 'fuck off'. I was so worried about her yesterday that one of my bestest friends, I can't think of a name that sums up how helpful and lovely she has been to me since I got ill eighteen months ago: my little Angel sister perhaps? Anyway she came round and cooked dinner for all the kids and for me, to give my mum a break. There was still a big drama afterwards, with PPB wanting to come home and lots of vicious texts.

All the stress only makes me feel worse.

Right now, my stomach pain is severe, but the bleeding rectally has stopped, and I am glad to have a period. I shall just have to take each day as it comes and follow doctors orders.

Regards the IC, I've found a very good private doc who is pioneering research into cystitis which will not go away, and she is going to test my urine in thorough methods not used by the NHS (in a few weeks, once stomach bug and Elmiron have cleared my system) then come up with a course of treatment. We had a phone consultation yesterday. She is clearly an expert. She does use long term a/bs, though, which I worry about in terms of gut flora / thrush. But lets see what she comes up with first. At least she seems to know what she is doing, which is more than the Big Cheese, bless him, my smiling Cheshire cat consultant, seems to know ('we don't understand IC, sorry' being his favourite catchphrase - one wonders if this would be the same if it was an illness affecting 90% men).

So that's where I'm at.

Taking Diazepam every time I feel like I'm going to fall off the edge of the world; resting a lot; trying not to panic. Not crying in front of the children.

Thankful for the help of my mother , whatever price it comes at, and my best friends who are being AMAZING - my two closest single mum friends, you know who you are, I could not be surviving this without your practical and emotional support. I love you both dearly.

I love many people who aren't here, either . Some are abroad; some have left my life for good; some temporarily. Some only exist now in my memory. But I love them still. And you know who you are, too.

Elmiron: day 26

So I have been on the Elmiron for almost a month now, and no noticeable improvement in my pain, frequency, urgency or how many times I have to get up in the night for the lavatory...

I am persevering with it because it has to be worth it, after everything I went through to get it. But it is draining the life out of me; a bit like Frodo wearing the ring; it feels like inhabiting a shadow land.

But all the while I'm thinking if there is a chance, just a chance, that this medication can help my bladder, then I'm in.

In the two big clinical trials, 38% of women noticed a discernible improvement around the 3 month mark, as opposed to around 16% on the placebo drug. This was what I based my decision to take it on.

I am sick to my stomach; sometimes I just want to eat and eat, other times I cannot eat a thing. My hair is thinning, though I am managing to disguise that. I am exhausted to the very core of my bones; some days, like today, I cannot leave the house. Tomorrow I have to do the school run in the morning as I have promised my son, so cannot ask anyone else, plus I have blood tests and a plan to have a cuppa with one of my best friends at her house. So I will have to drag myself around. The next day, I see my gynaecologist. Because my periods have stopped.

My body is no longer working. I am coming to accept that and yet I rage and rage against it in my mind, hence this next round of tests to search and search for some lurking guilty bacteria, hiding deep inside the lining of my bladder, who is responsible for this and who we can gun down with our machine guns. But I know in my heart that I may have to accept that there is no answer, and this is just my life now. And not everything is lost; but my health was the most precious thing I had, and I didn't even realise it.

I miss being well. I miss just running around with the kids; not having to time my trips to town or my trips anywhere according to proximity to a toilet. I miss being free from pain. I miss the luxury of feeling my emotions, just my emotions, without my physical body dominating.

I don't know where all this is going to end, and that uncertainty, which should perhaps give me hope, scares me most of all.