count your blessings even if they're small; and don't worry if it's all a bit fake

today I have managed:

to wrap presents with my son, giggling over it and watching Christmas movies

to listen to the wind and rain daydreaming about what might have been and what, in some strange twist of fate, may still be

to go slowly and give myself  a chance to rest even for ten minutes

to eat properly : three meals: breakfast, lunch and dinner. cereal, sandwiches, rice and vegetables.

to keep myself in the day and not panic about life three, six or twelve months down the line

to feel a tiny bit of the childhood excitement about Christmas.

What is it we were ever looking forward to? It was a feeling of our dreams coming true.

Christmas was always as much about Santa as about Jesus, for me. And they were/are/could be one and the same (my kids think they are probably friends).

It's about your worries ending and your wishes becoming reality and the validation that you have indeed been 'good' - a good Christian, doing what you can for the poor and meek and homeless giving all your change in the collection box in church every Sunday, even if you then drive off to your lovely house on the outskirts of town in your 4by4 and god forbid you ever meet their eye if you see them on the street; a good child, even if you know you've argued with your siblings every single day and you've done little things you know are wrong, stealing little things at school or lying to your parents about things you know are wrong; the very fact that Santa comes and fills your stocking some how makes it all ok again; a good person, because Christ is risen.

It still rings a bit hollow to me, if I am total honest.

And yet I'll take it, I'll take it now; because I'll take any hope on offer right now; even if the hope seems pale and wan. I'll take any of it because otherwise there is just total and utter bleak, black, dark, sinking, shattering despair.

So. Happy Christmas :)

still here, just about

So it's three days before Christmas, I'm in bed, in chronic pain, waiting for my brother to bring my little boy home. I haven't wrapped any presents and Santa had better actually be real or my kids are in trouble; I'm in too much pain at the moment even to crawl down the stairs to put the Christmas tree lights on, though I expect I will make myself.

Things have got to a really dire point for me.

I am in so much daily and nightly pain and discomfort, even on a strong Fentanyl patch and top up Tramadol.

The acupuncture seems to have done very little.

The Elmiron has been given the go ahead, so I should be happy about that, as it was such a big battle, but it's funny how your mind works - I'm now terrified about the side effects.

My consultant thinks my Interstitial Cystitis has got worse and wants to do another cystoscopy later in 2014 once we have given the Elmiron 3 to 6 months - assuming it doesn't destroy my liver / make all my hair fall out in clumps.... If the Elmiron does work, as I know it can from reading other people's stories, well, it would be a miracle.

But miracles don't happen to me.

This Christmas, I'm just worried that my misery and illness is going to ruin the time for everyone else. Everybody around me seems to have reached that point where they are just too exhausted with me to even feel sympathy or compassion anymore. My godfather the other day told me if I were only happier, people would like me more. Ha! Anyone with IC will understand the irony of that one.

So down the stairs I struggle. More soon.

loss

I haven't been on here for a while, in case you've missed me.

I've been in disabling pain, hardly able to carry on 'normal life'. The IC is so bad, it's frightening. Every day is dominated by my bladder. My 'soulmate' has been helping me with practical things when around, which has been more often lately, but lying to me about various things and god knows what else that I don't know about, so I have been in turmoil inside myself, desperate not to lose him, needing his help, unable to manage alone, yet conscious that something is very wrong. I will always love him but I cannot live surrounded by lies. And all the time my bladder is SCREAMING. I am at breaking point.

I am just checking in; will write when the words will come.

how much support do you really get in a support forum?

I go on various Interstitial Cystitis Support Forums, under different names, for support. I 'listen', by reading, and I empathise, and I console if appropriate; I ask advice on specific issues, or I just have a moan.

Last week, someone went too far with me. I was talking about my ongoing and frustrating battle for Elmiron, and she was being too intrusive and saying how easy it was to get it in the country she lives in, oh and had I thought of writing a letter?

Maybe I was a bit short with her. It had been a long day. I said good for you; and yes I've thought of writing letters.

She accused me of snideness, sarcasm and 'abuse'.

As far as I know the forum involved have not banned her; perhaps she's had a warning, I'm not sure. I certainly reported it.

We are both suffering from the same thing; perhaps we both were oversensitive; perhaps we were both out of line.

But the personal words she hit me with went beyond anything I would dream of saying in a public forum. I was shocked.

And I wondered: are we all 'in it together'? I've never actually met, in person, anyone else with confirmed IC. All the 'togetherness' is online. And there are weirdos online, just like in real life. There are nasty people everywhere out there, healthy or ill. Just because we all have IC doesn't mean we're suddenly best buddies. It's a bit like the enforced jolliness of the school gate: a bit fake.

only I could plan the quietest birthday and end up on the floor

So after the mayhem that was this time last year ( a dinner with six friends which ended with a club with two friends, I won't go into details but they took my phone off me to stop me from calling my ex and somehow I decided to stumble home at 3am up all the hills I could find, not just my own; ended up sobbing on sofa with the dishwasher man as audience on Nov 2, reaching a new rock bottom) , I decided to have a quiet birthday this year. No alcohol, no late nights, no melodramas. What could go wrong?

So here was the plan: A beautiful family birthday morning with my nearest and dearest. Breakfast in bed which my kids were determined to make. Meet with a few friends for brunch at one of my favourite cafes; a few hours at the Spa with a couple of best friends; birthday tea with friends and family. Then after settling children, another good friend coming over in the evening for a movie/pizza/relax. Calm, lovely day.

As I say, what could go wrong?

The day started well. Everything was good until we reached the steam rooms of the Spa. And then what could go wrong? Fentanyl, in a word.

I have gone back to wearing pain patches for my IC; as the morning pain became so unbearable again the GP and I decided that it was worth going back to a patch for a while, despite the fact they make my skin so itchy and make my ability to regulate hot and cold difficult , so I'm either boiling or freezing. But the agonising morning pain less debilitating so it's easier to look after the children.

So, we did this a week ago. And it's not as if I forgot; some lady in the spa even pointed it out to me 'do you realise you have a plaster on your shoulder?' (!!!) , but I forgot you are not meant to overheat in them i.e. steam rooms. It happened to me before in the summer, at a rollerblading party, where I got so hot the patch slid off, I put a new one on, and promptly o/d so badly I vomitted. So you'd have thought I'd have known. But I was just so excited. It was my birthday; we were at the spa; everything was lovely.

I just didn't think.

After the steam rooms, I started to zone out a bit. My friends were talking and I wanted to join in but wasn't sure which bloke was which, who they were discussing, didn't want to say the wrong thing; knew I would.

Went to changing rooms and lost ten minutes just sitting on floor with room spinning. Dried my hair then asked an assistant for help so we didn't get overcharged. They were lovely; brought me water and sweet tea. And my friends were pretty lovely too.

We got to my parents, where the children had helped to make a lovely birthday tea; I got through it, opened the presents, but it was as if they were all staring at me waiting for me to collapse. I clearly didn't look 'normal'.

Didn't have to drive home as Mum drove me. Then it was just me and the children. At some point my legs gave way. My ten year old was scared, I convinced her not to call 999 but just to call my parents, who did come but were angry (their stock position when faced with emotional difficulty) and mum said 'is this to do with the heroin patch on your arm'. And my father upset my son; calling him 'brainless' outside of his room, within his earshot, because he wouldn't obey orders. He was upset! It was his mum's birthday!

My friend turned up in the evening; she's amazing, but was out of her depth - is younger than me and hasn't seen this before. She didn't quite know what to do and we ended up with my fella, who would have been the best person in the world to have there, talking her through it. I'd taken some valium to get me through the birthday tea, so they were worried I would properly o/d. I knew I wouldn't, as soon as I started eating chocolate I felt better, but my friend said ' you can't even feed yourself', which stuck in my head - was she judging me? I felt the judgement, even if it was just in my head. I don't know what she really thought. Was this my fault?

It wasn't, it wasn't my fault. These things chase me, haunt me.

Next birthday I will do NOTHING. I will stay in bed all day, play board games with my kids. I won't venture out of the house and if I'm still on these stupid drugs for IC, I will make sure I don't get carried away with something approaching happiness and keep my mind firmly on the job.

So, another year passed.

Then the next night neither of my close friends who'd been at the spa with me could/would come to the fireworks with us at the Rec; so I ended up feeling very alone.

Something I feel a lot, these days.

how close can we get to each other?

Can we ever really know anybody else?

I feel I know my children, because they lived inside me and because I'm with them every day and they rely on me for their needs and their wants and they share their emotions with me... but they will grow and fly and I may feel at times when older that I don't know them anymore at all (I doubt it, but I know it can happen).

After two weeks, I am getting to know my kitten; I know what she likes (tuna; tickles with her red feathers; cuddles; independence; a clean litter tray) and what she doesnt like (being alone too long; being hassled to play or perform; loud noises) but how well will I ever know her? Cats know the truth of life, which is that we walk on our own.

I feel I know my best friends up to a point (though sometimes not as well as I think - friendship is a funny one, where we tend to present our 'best' side and keep other parts hidden... when it gets too real, friends who are not so real tend to run, as several of mine have done since I got ill), some members of my family (my brother - we used to do everything together - now time and space have distanced us but I still feel I know the essence of who he is; my cousin, who lives in NYC but I still feel I can turn to with anything; my Granny and Grandpa, who have been my rocks throughout my life and now there are no inhibitions, I care for my Grandpa, yesterday I literally picked him up off the floor after a fall and nursed him, just as the two of them did for me so many times when I fell down emotionally in my teens and twenties...) yet there is so much about all of them that I do not know.

There are so many gaps. And my mother and father - and my other siblings - I know them well, in one sense, and yet I do not know them at all. I know how they will act and react in a given situation; I know how they define themselves to the world; but their inner lives? Often as much of a mystery to me as mine is to them.

And my lovely frustrating soulmate, I know him inside out and have known him for so long, for good and for bad... We know each other so well and yet do I really know him? What does he keep hidden? What do I not know?

It's what has always made me suspicious of marriage. When people get married, do they then become 'one' and know each other completely? I doubt it. It seems a bit of a naive idea. There are still secrets and lies; the gaps remain. And perhaps it is the gaps which keep us interested. We can then share what we wish and keep the rest buried or hidden away in our secret corners... part of the fun in love or friendship is discovering some of these secrets and getting closer through this. I suppose marriage would be saying 'well, I love hanging out with you, you make me happy, you are my companion and I want to walk this path of life with you, even though we can't know everything about each other and actually it might get dull if we did.'

Because if we knew everything, would there be anything left to say?

The reality is that you can only really know yourself / the universal force / God.

I am still getting to know myself; and getting to know how to best handle and care for myself. I am finally getting there, but I have spent most of my life thus far running away from myself through drink/substances/sex etc... with IC I have had to leave these behaviours behind and face who I am. I have also had to learn how best to care for myself when in pain, physical and emotional.

I was sitting with my dear Grandpa yesterday, with all inhibitions gone. I won't go into details as he would hate it, but suffice to say that we no longer stand on ceremony. And I love him so much, and yet sometimes I just cannot reach him; nobody can.

And I thought: you come into this world alone and screaming and leave the same way. Everyone else you meet along the way is a companion, a partner, a lover, a pal, a responsibility, a lifelong friend, a passing acquaintance, an enemy, an annoyance, a giggle or a headache; but nobody else is dancing the same dance as you are.

You are unique; and you must face the fact that you are, ultimately, alone.

back on sleeping pills...

... the advantage of which is that I can sleep.

Disadvantages include not being able to get up easily in the morning, and adding another medication to the cocktail of painkillers/tranquilisers which is doing nothing to help my IC but only numbing the pain.

Still, I asked the doctor for them, as I was spending hours worrying at night which wasn't doing me any favours.

Last week, it was five years since my Granny (and best friend) died; a year since I broke up with Sleezeball. It's definitely been a reflective time, with the wind and rain outside and with this feeling of perpetual exhaustion and disappointment that my health has not improved with the passing of the year.

Still, snatches of rainbowdust are to be found, mostly playing with the children or the kitten. God knows what i'd be like if it was just me on my own. I'm really not sure I'd be here anymore. I'm glad to be grounded by these little creatures in reality, in tangible problems, even if some of them (like the bullying) are seemingly unsolvable.

Having a quiet day today, catching up with emails and paperwork.

Feeling blue but not disablingly so.

silver linings scrapbook

1. Our new kitten playfully absorbed in her pink mouse (her 'transitional object', according to slightly strange but very enthusiastic man at the Pet Shop) while moving on from breastfeeding from her mum to living as part of our family.

2. My children doing Sunday School and loving it; and then coming home to set up and do a cake/toy/teddy sale, raising over £22 for their school charity for kids in Africa.

3. Cuddling up with my little family, whom I made, laughing at X factor and realising the kids were going to bed too late but refusing to get my knickers in a twist about it too much.

4. Feeling the IC pain today but not letting it dominate my life.

5. Knowing that there are people out there who love me - lots of people, in lots of different ways - and knowing that however spiky and depressed and lonely I might feel, I love them right back.

6. The box set of the first ever Dallas episodes, as found at bargain price on Amazon, winging its sweet way to me by the end of the week. Roll on half term.

7. The wind blowing, the rain against the windows; the leaves hustling through the air. Autumn, my favourite time of year.

my darling daughter is being bullied

As if we didn't have enough to contend with right now, my Pre-Pubescent Beauty, who is in her final year of primary school and has so much to deal with at school and at home, is being bullied. Properly. For the first time in her life.

It's gone on for a while: nasty comments, picking on her, leaving her out. The other day, a 'well-brought-up-butter-wouldn't-melt' nasty little spoilt girl in her class BIT her. Took my daughter's wrist, and sank her teeth into it, leaving bite marks.

Obviously, I went crazy over this. I rang the form teacher immediately, and the next day it was escalated to the Head Teacher and he was calling in the girl's parents. But when he went all Jean Paul Sartre on me about how we could never get to the absolute reality of truth, I started to worry that the resolution to this would not be this horrible child standing outside with her back against the wall for the whole of lunch play for the next six months, or perhaps being tarred and feathered (joking here, I think) but rather just a metaphorical slap on the wrist and brushing the whole thing under the carpet.

The indisputable fact is that my daughter was bitten. There were teeth marks, and the girl admits to doing it. She says she panicked. My daughter says she turned around, spoke to her, looked into her eyes and then grabbed her and attacked her.

Suddenly, with the Head Teacher, I felt as if I was on a bad episode of Judge Judy. My daughter wasn't wearing a wire, so I'm not sure how to prove that her truth, which IS the truth (I do know when my daughter is lying, unlike some parents), is believed and acted on. This girl had previously been picking on PPB anyway, but as I hadn't reported it the school are treating it as an 'isolated incident'.

'This kind of thing doesn't happen in our school', said the Head. But it did. And it happened to my child. If the roles were reversed, I would fully expect to be ostracised as a dysfunctional single mum whose children are fast becoming feral. I wonder what people will say about the posh, rich, conceited mother of the Biter?

I really don't need this right now and neither does my daughter. There is a cake sale after school today for the prefects to organise - she is a prefect and yet was told by the other girls that she wasn't allowed to take part. They then denied this to their mothers, who obviously think PPB is over-dramatising and making things up.

I have to sit in a school assembly this afternoon with the Biter's parents; quite possibly I have to deal with them approaching me and trying to discuss it in front of all the other assembled parents. I have learnt through bitter experience that the only way to deal with bullies is either to ignore them, or if that becomes impossible, to stand up to them in a way which lifts you above them.

I will look this mother in the eye and tell her that in the absence of any kind of apology I do not wish to discuss it with her directly and I am dealing with the school on this matter. Then, I will turn and speak to whoever is sitting next to me. I will hold it together. I will not scratch her eyes out and ask her how her child could do this to my already fragile ten year old who has been through so much this past year. I will not pin her against the wall and scream at her. I have a feeling this could brand me the crazy one.

No. I will hold my head up high and keep the moral high ground. And that will take every ounce of my willpower. And probably a diazepam before I get there.

goodbyes

I just re-read the hideous abusive emails from my ex friend (see goodbye toxic friend; i've kept them in a folder marked 'bullshit' though really need to delete them) and wondered how somebody who once loved me so much could come to such a foul view of my personality.

I'm basically a kind, good person who tries her hardest to be a good mum and a good person and to do my best even when things are really tough. I've met shitty, bitchy women enough in my life to know that I'm not one of them. I'm not perfect, but I'm not what she accused me of being.

And do I care about being judged this way? I might do under normal circumstances, but not by her, because I've ended up judging her too, as a sanctimonious superior arrogant cruel loser... which is a really sad way to say goodbye after a friendship of seven years.

In the end, we have to say goodbye to everyone in this life though.

It's just a matter of how gently, kindly or diplomatically we do it.

There is an old Chinese proverb which applies well here: 'you can tell the quality of a friend by the elegance of his leavetaking'.

a trip to the V.E.T.

I think I'm pretty close to losing the plot completely.

Our new kitten is gorgeous but it's rather like having a new baby in the house; she needs constant attention, she isn't allowed out for the first month, she has all these needs and requirements that I have to meet.

You'd have thought that I'd have thought of that.

I hoped more that she would just be cute and lovely and bring us happiness.

If it was just me, I might quietly take her up to the cats and dogs home, but my children would be heartbroken.

So on we go, and added to my daily tasks now are cleaning out the litter tray several times a day as she hates it when I don't do it immediately, cleaning the kitchen floor constantly, feeding and grooming her, and keeping her from bolting up the stairs into the bedrooms. Roll on the installation of a cat flap (into our plastic door; somehow) and the days when she can go out and roam around and come back for cuddles.

We went to the V.E.T today for her first injections and microchipping, where he terrified my daughter and me with a long description of Roundworms, Toxicara, which can be caught by humans and can get into our bloodstream and make us die or blind or paralysed or worse (he didn't specify what was 'worse' than these).

'It's very irresponsible of her previous owners if they haven't wormed her,' he said.
'I don't know whether they have or not,' I replied, quite truthfully.
'Well, you could all be at risk. You should contact your family doctor'.

This did nothing for my mental health. My daughter's eyes widened; 'I don't want to go blind'.

The only time I feel calm, in fact, is when I can lie down with a hot water bottle under the duvet and shut out the fact that the rest of the world is going on.

I think this means that my head is in a bad way, but I never have time to stop and think about it.

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!)

collateral damage/ october blues

Shivery and cold, from the change in weather, from the fact that I'm fast running out of Tramadol, from my own defences being down.

October blues set in good and proper.

This time last year Interstitial Cystitis had not yet struck but I was ill, ill, ill; just out of hospital with an inflamed stomach and bowel, on so many painkillers that much of the month of last October is permanently erased from my memory, too ill to look after my poor confused children who were staying at my parents. Sleezeball 'dumped' me, like dropping me off a high building, out of a high window, and not even bothering to stick around to watch the splattered mess he left behind.

November was worse - freezing in my parents' huge house, unable to do even the smallest things, and then just when 'better' started to come - I could eat, I started to gain weight, my stomach started to heal- the problem spread to my bladder. And what I thought was a minor secondary problem has turned into a major life challenge; a horrendous chronic illness which is easily the hardest thing I've ever gone through.

So today we go to the hospital, to the Big Cheese. I am full of hope that the answer will be yes, I can have the Elmiron, it might make me better; I am full of anxiety that the answer will be no. But at least there will be an answer.

I take another good friend with me, she's practical and tough and strong and has always had my back, so if I fall apart she'll be good to have there, but I don't fall apart, because THERE IS NO ANSWER. They haven't even got the bloody question of whether I can take Elmiron to the Health Trust yet.

It took the pharmacy 6 weeks just to 'cost' it. (something I could do on the internet in an hour no doubt). Good old NHS. And meanwhile he says please come back in two months. I will let you know if I hear anything sooner. No other suggestions. No other ideas.

In delayed shock we went into town to have a cuppa and buy some herbs; and we walked straight past Mr Sleezeball in the street. This is the first time this has happened to me, though of course I've seen his car around - we don't live in the biggest of cities and his car is old and stands out, like him.

And there he was: large as life, vital, striding along the road. Not a care in the world. Breathing in the sweet autumn air. Looking forward to his lunch, no doubt; gazing at the beautiful women. Living his life, having stolen mine. If he'd raped me, he'd be in prison; but for stealing my health and vitality, he walks free. If he saw me, he didn't let on. If he saw me, I hope he felt guilty. But somehow I know he feels nothing at all.

I am just a minor insignificance in his past; just another woman he's fucked and fucked over.

I am just collateral damage.

And that's exactly how I feel: like something dropped from a great height and left to die, and yet somehow expected to get up and drag myself through the days and - oh yes - raise two children.

I cried for two hours this afternoon. I don't feel any better. Tonight I'm in paralysing pain, on the toilet every fifteen minutes, wondering how I will get through this and then tomorrow and tomorrow and tomorrow creeping in this petty pace...............

Because even if life's just a walking shadow, when you have two little children there is no exit button.

single mummy and proud...

As you'll know if you are a regular reader, I am a single mum. My children have different fathers, both of whom live in cities far away from my own. Fifty years ago my children would have been taken away from me; even twenty years ago, they would have been teased at school a lot more than now. But in the strata of society we find ourselves immersed in, we certainly stand out.

I do not mind standing out, which is lucky as I do not know many families like mine. Not that being a single parent is unusual: these days, so many children grow up in single parent families - something like 40% in the UK (don't quote me on that, but I remember being amazed how high the percentage is). It's just that there are not many around where I live.

I do have a number of close friends who are single mums (though just with one child, usually, or certainly by the same father). They all, in their different ways, bring their children up brilliantly, some more brilliantly than other mums I know of the more conventional variety.

Someone at the school gate said to me the other day 'I don't know how you do it'. Unsure whether this was a compliment or not, I stalled and said, 'well, I don't exactly have much choice,' and half-smiled. 'You're so brave,' said this acquaintance. 'Especially when you've been so ill. I just couldn't do it all without my husband, especially when things are hard. I rely on him so much. It must be awful to be on your own'. Now what was this meant to mean? She pities me? She admires me? She thinks I must be smoking opium out the back once the kids are in bed just to get through the terrible bleak evenings of husbandless existence?

This kind of comment is fairly normal, and I have toughened up. I tend to feel sorry for these women now, too scared, as one of my strong, feisty single mum friends reminded me today, to leave their men ('they would rather eat their own shit than fend for themselves,' was how she put it, and I couldn't phrase it better myself!).

Stigma against single parents is still rife in today's society, albeit more subtle than a couple of decades ago. You're somehow made to feel as if you're letting yourself and your children down; poor you; you're doing your best, but somehow it will never quite be any good.

In fact, it has been mistakenly suggested to me, either by the media or by people who don't know me or by ex-friends, that all of us single mums are most or all of the following (circle if appropriate): weak, stupid, depressed, selfish, attention-seeking, lazy, skint (this one is actually generally true, but it's not our fault), impossible to live with (or we'd have a man), victims of our own making, drama queens... the list goes on....

Being so pitifully inadequate ourselves, we are therefore wilfully bringing up children who are bound to turn out unruly members of dysfunctional groups of society, deprived as they have been of a patriarchal figure to instil on their chaos the order of early nights, discipline, safety and security ('just you wait til Daddy gets home'). Women who are too pathetic to even strive for the 'normality' of a 'proper family', but instead huddle in groups bemoaning our terrible fate, while our kids run down the road shoeless, eating McDonalds and wielding knives.

This bears no resemblance whatsoever to my reality, or to the lives of any of the single mums that I know. Even friends of mine who really are on the breadline still devote themselves to their children's wellbeing. Oh, and we prefer Morrisons cafe, so there.

I have been a single parent for almost all of the last decade. Even at the times when I lived with one or other of my children's fathers, I still operated as a single mum, making all of the decisions, doing all of the childcare, assuming all of the responsibility.

That is not to say that my Baby Daddies are not both ok/lovely/great/frustratingly charming in their own ways - of course they are. They are the fathers of my children, so although we frequently fall out, we frequently make friends again, and I count them both as family (albeit rather in the same category as some fairly distant cousins whom I wouldn't want to spend more than half a day with for fear of running out of safe topics of conversation and instead starting to tear each other's hair out just for the fun of it).

But I have always done it all myself, with back up (more at times; less at times) from my own family - my Very Welsh Mother, who has her good and bad points but loves my children almost as much as I do, and the rest of my tight-knit clan. I have always relied on close friendships for support, practical and emotional, but I am quite used to being both Mum and Dad. And I don't feel sorry for myself for this or feel like a victim; it's just normal, it's just the way it is.

I give the cuddles; I do the telling off. I am the soft one and the authority figure. I am the one who gives the tickles and the one who shouts 'enough!'. There is no 'what is Daddy going to say when he gets home from work?'. My household is the opposite of The Tiger who Came to Tea, if you know that story: if the Tiger came here, there would certainly be none of Daddy's beer to drink and I fear he would terrify my new kitten. And if he ate all of our food, there would be no food left, and no Daddy to take us all out to a cafe in our new red coats.

I do not tend to sit in the evenings wishing I had a husband to control my unruly children (sometimes I wish for a live-in nanny, but that's entirely different), because I think the likelihood is that I would be cooking his dinner, ironing his underpants and massaging his ego when I could be reading in the bath, writing my own words, or watching perfectly good episodes of Dallas or the X factor. I do not pine for a more 'normal' existence and my children are perfectly decent and lovely members of a brilliant primary school thank you very much.

Yes they are loud, yes they question everything, and yes I bet they sometimes wish they had a man here to run around with them and pick them up and swing them round, but they are bright, bubbly and full of life, they are so loved and nurtured, and importantly there are no big rows in my house (except when Pre-Pubescent Beauty picks them with me, and my poor Blue Eyed Boy retreats to another room to sit it out). There is no tension when parents think different things or fancy different ways of life or different people, but stay together 'for the sake of the kids', thus making those kids unhappy, insecure and mistakenly feeling guilty and responsible for their parents' unhappiness.

We have an open, communicative, warm, honest, direct and mostly happy family life, as anyone who knows us could confirm. It is bloody hard raising kids on your own, but it does not make you weak; it makes you strong.

You are on your own with it, so you have no choice but to toughen up. You become less selfish, less 'poor me', less naive; you certainly have no time to be lazy, between the cooking and the food shopping and the cleaning and the homework and the taxi driving and the amateur psychology and the pet-rearing (just about to arrive in my case) and the all-consuming needs of your lovely, amazing, beautiful offspring.

You have to give yourself time to recharge your batteries, or you run out of steam and collapse.

You have to learn to look after yourself, as nobody else will do it for you.

And yes, you have to be brave, because particularly at times of great stress or illness, such as the past year has been for me, it would be nice to have someone there every night to make you a cup of tea and chat about your day. It would be amazing to have someone else there to take over when the kids get upset or when I feel at collapsing point physically.

For the first time since having my children, I have this year, at times, wished that I'd done everything less unconventionally. Not because I think single parents let their children down, or because I feel sorry for myself. Simply out of pure fear. At some points I have feared that my little castle in the sand will come crumbling around me, because there is only one of me; I only have one pair of hands, and with my bladder as raw as it has been I have sometimes started to panic about how on earth I will get through the next decade.

But from what some of my married friends say, I think I'd still much rather be a single mum, hard though it is. Unless I one day marry my true love (which I hope may happen, though it is a long way off from where we're standing, but we have not given up on the dream) and we carve out some kind of life where we can actually be there for each other in this really honestly loving capacity, I'm better off living alone with my children and my new kitten and being true to myself.

Getting/remaing/wishing to be married just for the sake of it sounds like the worst, most claustrophobic kind of existence I can imagine. Being with someone because you're too scared to upset the children by leaving, too scared to cope alone, too scared to face the stigma of doing so... it sounds like hell.

Bring on the box sets and the just-me-in-my-blanket-on-the-sofa nights. Bring on the barbed comments. Bring on the hard work. It does not kill us; it makes us stronger.

I'd rather be lonely than be in a cage. Not even an Ikea-decorated, Cath Kidston-embroidered cage.

the fading of the year

It's a beautiful day outside: warm, like a fresh June or April day but with a slight twist in the air, a shadow of breeze which hints at the darker days approaching: Halloween, Bonfire Night, Advent... But for now, it could almost be Spring. It's the change which you can feel; the wheel of the year spinning on its axis.

Autumn is, in fact, my favourite season. Always has been. My mother's too - one of the (fairly rare) things that we agree on. She always says it is because you are never disappointed: if it rains, you expect it - if it is sunny, you're pleasantly surprised - if it blows a gale, it's exciting. Sure enough, we have had all those days lately, including a spectacular thunderstorm the other night which brought both of my children into my bed in the middle of the night ('scared of the white light', said Blue Eyed Boy, clutching his blanket. 'Lightning you mean', said my half-asleep daughter, Pre-Pubescent Beauty, sweeping her long hair away from her face. 'Go back to sleep'.)

For me it is more than the lack of disappointment that makes Autumn so rich and poignant.

It is the turning of the tide, the shortening of the days, the dying of the light, the change in the air; the opposite spoke of the wheel to those bright days of early Spring. Everything is fading, the leaves turn from green to amber to russet to brown and finally blow in the wind on the dusty streets as Winter comes in. Everything is beginning to sleep. Conkers fall to the ground; the flowers begin to close their heads and retire for the winter; animals start to furrow their hideouts to escape the cold.

And we can all slow down a bit. We have more time. Time to draw on what we have achieved, what we have learnt; what we have yet to learn. Time to reflect on how we want to grow in the hibernation of late Autumn and Winter; what we want to develop in time for next year when we can emerge again into the sun.

Plus, I really hate enforced jolliness: that 'having to be happy' feeling. New Year's Eve, for example - when you're meant to be dancing from the rooftops and paying £20 just to get into your local pub or club. The best one I had I got lost in a field at an outdoor rave, years ago, totally off my head. The second best, I slept right through it.

Summer is much, much worse.... You have to smile, to say 'isn't this wonderful?' even when the sweat is seeping through your summer dress and you just feel like collapsing on the floor in exhaustion. You have to be happy when the sun is out in England, however you feel really, because so often it isn't.

But there is none of that now. Nothing is forced; nothing is set; nothing is fixed.

Each day comes as it comes. Kick those leaves in the air and watch them dance in the wind. Feel the turning of the tide, the spinning of the wheel. Another year passing and fading and disappearing; all the troubles turning into distant memories. Another year approaching with its bright, clean pages for a brand new fresh start.

not waving or drowning, just keeping our boat afloat

So here we are in our little boat. Me and my children. And to hell with everyone else. I think that might be the message I'm sending out to the world, and the message the world is reflecting back to me. Both of my Baby Daddies hate me right now, I keep arguing with friends and family, and I generally just get on with the business of trying to tread water and get through the days without too much thought for other people's feelings, emotions or preferences.

This means I'm pissing a lot of people off. And because I'm in survival mode, I don't care much. You're either with me, or against me; and if you're against me, I can't be bothered with you anyway and there's the door - please walk through it. If you're with me, great - but don't expect me to be the old me I was a couple of years ago.

Yes I still smile a lot outwardly when I can be bothered; that's the mask I put on to the world.

Yes I still try to be compassionate and caring and kind and interested in others.... I still care when my friends are upset or when some terrible event happens in the world....

But part of me has gone cold, so cold, and only cares about keeping my little boat afloat, so that my children and I do not sink under the surface into the icy depths and get swallowed up by the black water beneath us. We have to keep going. So we keep going.

I forget to ask people things - I forget to call people - I forget birthdays - I forget to 'consult' my Baby Daddies on things (though I pretty much raise my kids single-handed so part of me doesn't really want to consult them anyway, but my level of communication has definitely decreased). I'm not on Facebook or Twitter. I don't waste time with inane chat in the playground at school pick up time. I focus on what is important:my health, my children, our wellbeing, peace and love surrounding us.

And that way, we survive. And if people don't like it, they can just turn around and sail away in the opposite direction. My remaining friends and supporters are pretty tolerant of me in this state and understand where I'm at. Just as well.

my six year old's confusing world

So my Blue Eyed Boy, as I really do think of him, has always been the 'easy' one. I ask him to do something, he does it; not for a reward, but just to make me happy. He cuddles up in bed with me for stories and first thing in the morning; he looks forward to 'Mummy Days' (which we had a lot when I was well in the year before he started school when I was mostly spending each day with him) and chats away happily about his toys, friends and dreams.

But lately all this has changed. He has become fractious, irritable, rude. 'I hate you', he shouts to his godmother, whom I happen to know is one of his very favourite people in the world. 'I wish I had a different sister/mother', he will tell us, when we ask him to do something he doesn't want to do. He does not like his year 2 teacher (who admittedly is very strict and not exactly my favourite person either, but what can you do?) and is often reluctant to go to school in the morning.

This must be connected with my illness, but my illness has gone on far longer than this behaviour. Last year, even when I was at my most severely ill, underweight, skeletal, in hospital or wandering around like a ghost barely able to take care of my kids, he rallied like a little soldier and went to school 'happy' each day, and did I think enjoy his school days and his times with me that were moments of joy amidst the hideousness. I thought he was dealing with it all fine; but not so.

Yesterday I decided to get to the bottom of it and took him out for pizza and did a mixture of fun, games and serious chat. In the end, we worked out together that the three things most bugging him were missing Daddy (6 out of 10, but worse just after saying goodbye), Mummy not being better yet (10 out of 10) and Ms Severity his teacher (another 10 out of 10). Having got to the root of it - the problem is not his sister (2 out of 10 for arguments with her), or his friendships (0 out of 10 - he loves his friends and is popular), or the wider family troubles (4 out of 10, but he can deal with it) - I can now start to deal with it.

I've made an appointment to see his teacher. Ms Severity is scary, even to me, so I'm going to have to phrase my concerns carefully, in terms of his wellbeing rather than her teaching methods!

He is seeing Daddy this weekend and again in half term; all I can do is help to keep up regular contact and phone conversations.

And as for me. It made me question: have I been too open with my kids? It would have been impossible  to 'pretend' that I was 'better' at any point in the past year; our house is small, we have one toilet, and sometimes I'm on it, a lot. But practicalities aside, I have also always believed in being straight with my children. That if you don't talk to children about death, illness and uncomfortable things, they find out later anyway and are ill-equipped to deal with them then. And turn around to ask you why you deceived them - a much worse version of lying about Santa and the Tooth Fairy. But have I been too open?

I looked into his deep blue eyes and said firmly 'Mummy is fighting this thing, and fighting hard'. He looked away. I got him to look back at me and I said it again. 'I'm feeling much better than I was and I'm not going to have this illness all my life and meanwhile we all have to be brave and fight together'. He nodded, listening to me. 'It's not that,' he said. 'I mean, I know that.' 'Then what?' I asked. 'It's so unfair,' he started crying. 'Why did it have to happen? Why did this happen to us? It's been going on for so long'. And I realised that what was affecting him was not my attitude to my illness or the fact that I have been open with the children about my different treatment options and the days when I feel better or the days when I need more rest, but rather just the cruelty of life - that these things have to happen at all.

We cannot protect our children from this, however hard we try.

In Pizza Hut, at the next table, was a woman paralysed from the waist down, in a highly complicated and fascinating (to a six year old) wheelchair. She and I smiled at each other. She was with her parents and a little boy about 7 or 8. Dylan and I looked, and looked away, and played our colouring game; we ate our pizza. Later, he said 'that Mummy could've been you'. And I said 'exactly'.

He was a happier boy at bedtime than he was after school; the only way me and my little family (me, my children and my soon-to-be kitten) will get through this is if we all stick together and are honest.

But perhaps I will try to say less when I'm having a bad day, and just go to bed earlier. Already my daughter and I have shielded Dylan from the worst of my IC pain; but I think it is clear that I need to do more. It's a fine line that we have to tread as parents; we can only do our best. Which is what I have been doing, and even if I wake at 5am worrying whether my best is good enough, tough. My best is all that I have to offer.

IC awareness day 30: raising awareness

What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers.  What methods of awareness can you use to show the public this is real?
In this blog, I explore many of the issues surrounding IC in the context of my own life as a single mum of 2 in the U.K. Its readership is growing. I am receiving positive feedback from IC sufferers who are so thankful I am putting into words the things they feel. This is real way of raising awareness of the realities of living with this disease. On the back of this, it's possible I'll have an article in the national press over here fairly soon.

I have also started to talk to people more about my condition. If people ask how I am, sometimes I don't just say 'getting there' or 'not too bad', but I stop and tell them a bit. Sometimes they don't want to know, which is fine. But sometimes - more often than I would have predicted - they do. People listen, and can't believe it - 'you mean, you have cystitis all the time? No way! That can't be possible'. And then they listen some more, and take it in, and go away and process it. For every one person who does this, awareness spreads.

I have connected with an IC sufferer not too far from where I live and am hoping to help set up a local monthly support group in addition to the online support I've found at IC-Network and the COB. I might ask at the hospital if i can put up a card asking who is suffering with similar symptoms. This card in itself would be read by hundreds of people coming in and out for appointments.
     
So I plan to do what I can, within the sphere I'm living and with the low energy level I have. If we all do a little, a lot will get done in terms of showing the public that Interstitial Cystitis is really affecting tens of thousands of people worldwide - if not more.

Much, much more money needs to go into research in my opinion. It's not enough for doctors to throw up their hands and say 'we don't know'. It just is not good enough. It's not enough for other people to think we are exaggerating or it is in our heads or it simply can't be possible. It is possible. It's happening to us; we're living with it.

In terms of medication, we need to know what aside from Elmiron (which as yet I have not even been allowed to take!) and nerve blockers/antihistamines (which do not work for me) might substantially help us. I have realised that I, for one, cannot spent the next decades of my life on opiate painkillers. I'm only 35. I'm not standing for it. More research into alternative therapies and supplements could reap huge benefits for many of us; the small studies into Aloe Vera and Cystoprotek are so promising and such a ray of hope... but the big drug companies are not funding them so they remain too small to be definitive. They need repeating on a much larger scale. For this, we need public awareness and sponsorship. We need this disease to be common knowledge, like arthritis, fybromyalgia, ME or other chronic pain conditions.

So we cannot stop pushing and fighting for our brighter future, however dark things seem when the pain is unbearable and you're on the toilet every fifteen minutes and so exhausted from it all you feel like giving up. Even if there is no 'cure', there are no doubt a number of remedies that as yet remain unexplored and thus unused. And in the end, perhaps, a 'cure' will be found, and some of that will be thanks to each of us fighting this good fight. We are not fighting just for ourselves, but for each other.

with or without you

I got really upset yesterday at the thought that my dear old Grandpa, whom I am very close to and have cared for a great deal in the 5 years since my Granny (and best friend) died, might eventually have to move to a home, and not in the city I live in. That I might not be able to see him whenever I/he want/s. That we might be separated. I burst into tears. And then I thought - he's 93. It's not as if he is going to be here in ten years time anyway. Or even five. Who knows?

Suddenly that thought was so untenable to me; so utterly dreadful. I feel as if I have lost enough people who I really care about; I cannot lose another. The people who are close to me are so precious to me I just want to superglue them to the spot, to 'keep' them, to know for sure that they are not going anywhere.

And yet that is not how life works; not my life, and not anybody's life. Everything is in a state of flux and change is the law of the universe. We all grow old; we all go through phases and metamorphose into different people, though we remain the same in essence. We outgrow each other. We 'dump' each other. We move away. We die.

The man I love is far away from me; he is on the other side of the country. My family hate him because of the way he acted years ago, because he lied, because he stole, because he hurt me. Also he is someone so out of their sphere that they cannot understand what makes him tick and the very idea of him being my soulmate hurts or would hurt them (some of them know; some can't stand to know). The fact that he has learnt and grown and changed doesn't come into it for them, though for me it counts for a lot. We cannot be together for now and yet there he is, solid, supporting me, from afar.

Some people say it is easy to do that, but I disagree. It's not easy to be there for someone, up close or far away. It is really difficult to listen; it's not easy to be bothered. How often do you really take the time to hear somebody else? It's much easier to forget, to say 'I'll call you back'; to postpone and prioritise something or someone else. But I never get that from him. And I can only conclude it's because of genuine old-fashioned love. I do the same for him and however things turn out, will probably do so all my life. Who knows what the future holds for us? I cannot hold onto him; it's like sinking in quicksand or holding a ladder up to the stars. I can only let it be what it is.

As with all of my relationships: in the end, we are born alone and we die alone. And with or without any of you, my life will play out, and will go through its phases, and one day I will stop breathing.

It's good to think about these things once in a while. Everything can seem so permanent, and yet nothing is. Nothing lasts. Except love, which does; though sometimes that just causes more pain.

But love is what saves us. It is, in my view, the only force in this universe stronger than death. Love is what pulls us through when we do not want to carry on; love is what gets us out of bed in the morning and encourages us to put one foot in front of another. The immediate love for and from my children keeps me going through the days. Otherwise I would probably have given up the daily and hourly fight by now.

So love - or Love, for it merits a capital letter, being as important as God, whatever you take that to mean - is permanent, but we cannot hold onto it. It's like trapping a butterfly in a glass box to look at its beauty: that's the best way to kill it.

how did my Interstitial Cystitis begin?..day 29

How did your IC begin? Did it come on suddenly or gradually? Do you know what caused it?

My IC came suddenly one November evening last year. Sudden pain one evening when going to the loo before bed. Then increasing symptoms over a few days, but it was a couple of weeks before the GP would take it seriously and even start me on any (useless) antibiotics.

Up until then my bladder had been completely normal, for years. A decade previously I'd had a small polyp removed which had been causing bacterial infections, and eventually a kidney infection; but for years and years I had only suffered the occasional UTI, usually related to sex and easily treated with a course of antibiotics.

So I was not particularly worried at first; more frustrated. Not another health issue, I thought. For two previous months I had been severely ill with stomach and bowel problems, a combination of severe gastritis (inflammation, interestingly, of the lining of the stomach) and severe cryptosporidium (a nasty parasite caught from the nasty canal water of my nasty ex partner's nasty boat ). I was dangerously underweight. I assumed this UTI would just go away and was obviously due to some bacteria from recent diareahha.

And maybe that's what had happened, at first. I'd just had the second of two full-on CT scans as I'd lost so much weight people were scared I had cancer as I had a 'shadow' round the stomach area which turned out to be 'nothing' after all; and the second CT scan had involved drinking a large amount of dye fluid which had given me a bad upset stomach. Sure enough, ecoli did come back on the first test, though not the dipstick only the culture; a couple more were indeterminate -mixed culture. Then they were all clear, and have remained clear. The dipstick tests were always clear, which I find odd bearing in mind the state of my bladder.

And so the nightmare began. For weeks, months, I was convinced it was only a case of finding the 'right' antibiotic. Then I was convinced it was ureaplasma, mycoplasma, chlamydia... it was none of these things. No bacteria. I had to come to terms, with great difficulty, after the cystoscopy and biopsy, with the (semi?) permanent nature of this disease. It's been almost a year now. What a journey. I would not wish this on my worst enemy. It's easily the most difficult thing I've lived through; and I've lived through a lot. And yet it is teaching me so much, in such a stark way, about what and who is/isn't important in my life now.

Did I get IC from bacteria? Perhaps initially. Did I get IC from being run down? Yes, my immune system was fucked. Did I get IC because I was furious with my ex? Who knows. Did I get IC because of a generalised inflammation of my internal organs? This is what I most believe.

So now I'm really going for the anti-inflamatory approach; in all areas of my life. A lovely lady on the IC network pointed out to me the difference betweeen anger and bitterness. I am not bitter; I refuse to be. IC will not break my spirit; I will not let it. I will fight for my moments of joy and for the life I've created; but my God, do we have to fight hard.

lying here thinking...

... about the people in my life who have stuck by me, and the people who have returned, and the people who have disappeared, slowly or suddenly, and the people who have run fast in the other direction from me.

I never could have predicted who would do what.

I don't feel sad for the people I have lost, really; though I will miss them, I expect, in the fullness of time. But there's no point in sticking around nominally and I don't take betrayal lightly. Either you want to be with me, or not. I'm not perfect - who the hell is - and if somebody spends their time criticising you and pointing out your faults when you are ill, then really they're not worth knowing. In fact, they're a toxic bitch and you're much, much better off without them. So goodbye, Toxic Friend. And my friendships which have lapsed... well, come back if you want, but don't expect it to be quite the same. I've learnt that fair weather friends aren't really friends at all.

If somebody is in a relationship with you for a year when the going is good, then leaves you when you've just got out of hospital and are seriously ill, you can safely conclude they are a. a total wanker, and b. not somebody who loved or respected you much in the first place. Mr Sleezeball, I firmly add you to my list of people I most regret sleeping with. In fact, you're at the top of the list.

My few close friends who have been with me through thick and thin this year I will love forever and will never forget their kindness. And you know who you are. Some of them I've seen regularly - as they're local; others are far away (and yes, London is far!) but I don't begrudge them that if they've kept in touch and I've known they still care. One amazing friend sent me letters and postcards through the winter which really kept me going. Some are ill themselves or have had many other things going on and so long as I know we're still connected, it's ok.

One of my loveliest friends emigrated to Australia 2 years ago and has since had a baby and got herself a new husband (not in that order, but you know what I mean). It only took an hour sitting on a bench with her when she visited for a day to realise that I hadn't lost her at all, even though I never see her and months and months go by without us talking. Roll on the days when I am well enough to visit Byron Bay! Likewise another very close friend is currently living in the States. I need to email her as I hope to visit her next year with Pre Pubescent Beauty, who is her goddaughter. I miss her a lot, but I know as soon as I see her we will just pick up where we left off; we always do.

And last but not least, my Heathcliff, my soulmate, whom I wish I could be with but at least know is out there and loves me. He has been like a rock for me since we got back in touch, particularly at midnight when I'm sobbing about how much pain I'm in and there is nobody who wants or cares to listen. He is my past; he is here, back, incredibly, in my present; I hope if he sorts out his shit he might stick around for my future too.

alone at last... and thank you

So it's Saturday morning, and for the first time in months and months my family are going to have the children all day. I am in bed, with a copy of the Guardian, my laptop, my P.D. James book, and a cup of Roibush tea. I can relax. I can have a long, hot bath. I can call my errant soulmate and catch up with his news and hear his voice. I can watch a film. I can go back to sleep.

They are going to their swimming lessons with my Mum, for which I am very grateful, and then my beautiful little sister and her boyfriend are taking them out this afternoon - they live in London so we don't see them as much as we'd like, the children love their auntie and her fella (who taught my daughter how to 'cook' a crisp packet - don't ask me why but this won her over) and are conseqently very excited about today.

The past couple of hours were really hard work, getting them dressed and doing breakfast and getting all their gear ready while containing excitement levels and fractious behaviour. I sometimes think they're not kids at all, but baby tigers. Shouting, scratching, hugging, jumping up and down... But as my dear Granny used to say, 'we don't want our children to be Potatoes, do we?'. Definitely not. And life seemed more 'normal' this morning, if I can even remember what that was for us before my IC. It does, when I don't feel too bad (that'll be the Tramadol working, and possibly the Acupuncture), and when I don't feel so alone (that'll be the family helping me out today).

I have spent the past week on here battling with some malware/virus which is now clear. It has driven me mad and at times I've thought about giving up on the whole thing. It was due to downloading a random picture; so no more pictures here for now. And I'm not giving up - this is my space - this is my Room of my Own.

I've had some really lovely comments both on the content of my blog and the style and fabric of my writing. As I was saying to one of my best friends, who is an editor so certainly knows bad writing from good, I really didn't know if I could write anymore when I started this thing. I have always identified as a writer, and have always written - essays, articles, stories, poems. But since the birth of Blue Eyed Boy 6 years ago, it's been hard to find the time or energy.

I started this blog in desperation as I just needed to get some of my feelings out. The need was eating me up; and one day someone suggested a blog. I've never liked the idea before, but somehow this was the right time.

It's better than a diary, as it reaches others and helps me feel less alone. As it is anonymous, and not 'for' any formal purpose except my own catharsis and helping others with IC or who are struggling as single mums, I feel no pressure to write in any particular style and consequently no block to the words flowing. People who know me say it sounds like me talking. So there we have it.

Thank you, everyone who is reading consistently and re-posting on your social media. Would love to get my readership up to reach more people out there who say that I maange to verbalise the things they are feeling about chronic illness/ single parenthood / general angst and pain of life. Anything you can do to spread the word is much appreciated. This blog is my heart and soul right now. It's a lifeline. It means a lot to me, as I realised when I thought I was losing it to some stupid computer fuck up. I do not want it to disappear, but to grow.

Just like I do not want to fade away into this world of illness and despair, but want to grow through it and emerge a stronger, wiser woman. Sometimes that feels impossible. Other times, like today, I have glimpses of that happening.

Treatments and medicines:IC awareness day28

So I had many antibiotics before diagnosis. I think the initial ones cleared an initial ecoli UTI infection; the rest merely caused immune system to weaken further and generally fucked up my system. Then I had a rigid cystoscopy with hydrodistension. This did nothing to help my symptoms - they worsened while I was healing from it, then were the same as before. But it was diagnostic as mast cells and chronic inflammation found and so IC diagnosed definitively instead of 'urethral syndrome' or 'it's in your head' etc....

Since then I have tried:
Conventional medicine: 1. Nortriptyline (which worked a bit initially, but then stopped affecting my bladder just making me sluggish and gain weight and everything dried out... so tried doubling it but the side effects just doubled, so stopped... 2. Hydroxyzine - I thought this had an effect at the beginning but then again stopped working at all and just made me so sleepy and also caused retention. 3. PAINKILLERS - without which I couldn't function - I've tried. I'm currently on Tramadol and Dihydrocodeine, which work out ok if I take Tramadol in the day and DH in the evening. Sometimes I use co-codamol when pain is less, or supplement the strong ones with paracetemol. My pain is a 5 out of 10 to an 8 out of 10 ON these. Without them, I can barely move. I still have days of intense pain even on this medication. I have also tried Fentanyl and Buphrenorphine patches. Both avoided the morning agony but both had side effects and the Fentanyl kept slipping off - but I was in much less pain- may go back on one of these soon. 4. Diazepam - for my Pelvic Floor Dysfunction - my muscles are so tight that it's hard to relax to urinate, so the diazepam helps with this. It also helps me feel less panicky and desperate. 5. Have put in special application for Elmiron through my urology consultant - STILL waiting to hear.

Alternative medicine: Reflexology / aromatherapy - lovely , but ain't gonna cure my IC. Currently having acupuncture, the jury is out on this one. I have had a few more good days lately so you never know, it may be doing something. Need 6 to 8 sessions before can know.

Diet: no caffeine (at all), no alcohol (at all), and much less sugar or gluten. Mostly following the IC diet though I do what works for me. Absolutely no citrus or spice. Artificial sweeteners make me in bad pain. Sparkling water is fine for me tho, as is vanilla ice cream. People do all kinds of things with diet - I don't think we should judge or be prescriptive - but there is no doubt coffee, wine and tomatoes are doing you no favours.

Lifestyle: I'm a busy single mum BUT i spent more time resting now. I mean, lying still and either reading, or thinking, or staring into space. I have lots of hot baths. I use heat patches and cold packs. I adapt. I expect less of others and myself. I try to make this as easy on the kids as possible, which isn't easy at all. I TRY to think positive, which some days is a lot easier than others, but if anyone tries to tell me I can 'affirm' my way to health, I think I will throw Louise Hay's book at them. My acupuncturist says there is a definitive link between IC and anger. This is interesting. I certainly am angry with my ex, as he was responsible for making me ill in the first place which then led to my IC. Dropping this anger is v hard. She says I won't get better til I do. This then makes me angry with her lol :) xxx

Supplements: Probiotics. Have tried some aloe vera, tho it wasn't pure enough, so want to order the Desert Harvest one but currently broke. Would be interested in Cystoprotek as haven't yet tried. Eat more Omega 3 and 6 and I take vitamins sometimes.

Do whatever works for you. Be your own best friend and your own advocate. Nobody will fight this battle for you.

IC awareness day 25:what IC has not changed about me

What are some things about you that the IC hasn't changed? We often talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn't taken away?

I'm still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. If I care, I really care. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don't know how to be false or silly or bitchy for the sake of it. I don't beat about the bush and I still can't stand pretentious people or game players. 

I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn't scream from the rooftops or dance in the streets.

I'm still a good mum - although restricted physically in some ways, in others the IC has made me even stronger - as I'm more conscious of how lucky I am to be blessed with my two children and how big a job I'm doing on my own. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured... That much has not changed. The three of us are a tight family - even tighter than a year ago, I would say. I still love going to the park with them, even if i'm sitting on a bench for most of it, cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. IC cannot and will not take the family I've created away from me.

I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I still love the autumn leaves and the crisp night sky in the countryside when you can see thousands of ancient stars. 

I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it's serious enough to warrant that.

I still follow my heart. Whatever knocks and blows I receive I retain a kind of internal innocence, which is maybe weaker now but not dead: I still believe in love, and fairies, and mermaids.

I may not believe in wishes coming true so much anymore but you never know, that could always change if mine does.

back from acupuncture and feel worse not better

So today's experience of acupuncture was not so good, and I've returned home feeling more ill than I did this morning. Somehow have to get through hours and hours of child-related activity before can sleep; have to go to look around a school for PPB; do not know how the hell I am going to manage to do these things. I feel in burning pain, hot, shivery, emotionally drained...

It was partly the travel (drove 30 mins there and 30 mins back to her house, for a discount, which I can't keep doing), partly that my Very Welsh Mother, bless her heart, drove me, which was nice of her but there is always this tension bubbling between us whatever we're doing... and partly the session itself. She seemed to use a million needles and then started reading me a book along the lines of 'You can Heal your Life' - all about affirmations and herbs that are meant to help me - and generally about giving up the 'poor me' attitude in favour of 'taking responsibility'.

It all made me stiffen, flinch, and got me on the defensive; I felt like she was judging me even if she wasn't; and all in all now I feel worse than a few hours ago.......... disappointing hey............. i just wish there was a CURE for this BLOODY DISEASE because I am so SICK of it and of people's opinions about it and of people telling me I can heal my own bloody life, like it's some kind of choice I've made to have a red, raw, bleeding bladder. I do not remember making that choice. And yes I'm angry. Wouldn't you be? So the anger is making me ill..... so it's a vicious circle...... so now what??????????

IC awareness day 23: frequency

This is shocking to people who do not have bladder problems. On a bad day, it is once every ten or fifteen minutes, most hours. My maths is bad, but over 12 hours this works out as at least 48. Plus a good few times in the night. AT LEAST 50 times in the 24 hour day. On a good day, it can be once an hour or occasionally even two hours. So I suppose the very best, frequency wise, with a good night as well, is 12 - 15 times in the 24 hour day. This is rare though.
Yesterday I could get away with once in a 1 and a half hour train journey, if I sat still with my legs crossed....

I suppose the norm is somewhere in the middle. 30 times a day maybe?
I've never actually counted, over 24 hours; maybe I should.
Often I have to go in one ad break, then the next 15 minutes later, while watching TV; that's quite usual.
Some poor soul the other day said to me in passing 'ooooh I really needed a wee half an hour ago; now the feeling's just disappeared; do you ever get that?'
I just smiled and said nothing. Really, there was nothing to say.

IC awareness day 22-most supportive friend

Dear C

Don't want to name you in public as I know you'd hate that; your support has always been so quiet, unassuming and steady, and I know you would hate me to shout from the rooftops about it, yet I would not have got through the last year without it. 

We've been friends for ages, but it developed slowly, and if someone had told me a few years ago that when I developed a chronic illness you'd be the person who stuck by me the closest and was the most reliable, supportive, sympathetic and understanding, I'd have been surprised. Not because I didn't know that you were all of these things, because I did; but just - well - life surprises us sometimes. 

I thought there were other, perhaps closer or more intensely close friends, who would have rallied around more dramatically; yet some of these quickly slipped away, and some just went into hiding until things got better (they haven't, but you don't ever seem to mind if I spent an hour moaning about my pain, or if I never want to talk about it at all and just want to pretend it isn't happening). Other friends have been there on and off, and family, but nobody that I have felt totally relaxed with all the time.

So. Thank you for being the most supportive person in my life over the past year.

You have helped me in numerous ways: from regular visits to me in hospital last autumn, to listening to me rant and ramble, to seeing me through manic days on the wrong painkiller combo and silent car trips when I was so depressed at the break up of my relationship, from staying the night with me after my cystoscopy, leaving your small children to do so, to taking day trips out with the children (even if I start arguing with people because so stressed out!), to supportive texts most days and just knowing you are always there if I need you.... you've had my children round to play numerous times when I just felt too weak to get through the day.... emotional support, moral support, and practical support, you've done them all. And you know who you are and you are amazing and don't ever, ever think that I don't appreciate it or that I don't value you really highly. 

You've been a total rock for me this year; my little sis. I am here for you too, don't you forget it. Thank you, truly.

xxx

welcome to the world little one

So blog-wise, for those who have been having difficulties, I just installed Google Chrome and I got the Ad Blocker extension... it seems a bit better.... I would hate to have to give this up or transfer it all elsewhere which would take an age now!! This blog really is safe so if you can't access it one way, try another; I've run so much antivirus, antispyware, antimalware etc I know it is fine... wish I could do the same on my IC - just take a morning and blitz it!

So here I am, Tuesday morning. Back from London, a day trip yesterday, to see my beautiful nephew. I would post a picture but I want this blog to stay anonymous plus the events of the past few days on here have shown me that anything I upload to here may bring problems with it, so just text for now, no pics.

It was so lovely to see my nephew, and my little brother all grown up and being Daddy. Cheered me up just getting out of here for the day and although the travelling was tiring, it was worth it. The silence in the quiet carriage on the train was worth its weight in ten pound notes, barring one man who got on, sat down in the seat behind me and boomed 'is this the quiet carriage? where you can't use your mobile?' like something out of a comedy sketch. I just moved seats. Usually I would have engaged in discussion with him ('yes, and piss off', or something a bit more polite) but I had my book to read and I just couldn't be bothered to waste my energy.

It's getting more and more like that these days - when something really bugs me, sometimes I am more the old me than I ever used to be and I really do shout about it, but other times I just haven't got the energy. And actually, that's fine. Yesterday was not about engaging in arguments with random strangers. It was about seeing my brother, sister-in-law, and their beautiful new baby boy. And realising i am now an auntie, officially, and the passing of time etc etc. That's what it was about - and except for one scary moment, where I left my train ticket and oyster card in a Starbucks I'd popped into just to use the toilet, and had to run back in heels to the same toilet and find with relief and surprise that it was still there (in London, a small miracle), the day was peaceful and my symptoms were numbed with a double dose of painkillers. 

I am paying for it today - exhausted, can hardly walk down the stairs, wondering how on earth to get up and going.

But it was worth it a hundred times over. Welcome to the world my new little nephew; I hope your life is full of blessings and bliss and sunshine.

last saturday's post plus note to readers

ok so here is my post again from last Saturday - someone recommended I delete and repost it.

adverts are now popping up on my blog and I think if this shit goes on I will just give up!! I can't see how to fix it. i've spent hours and hours and hours on it and I don't need the aggro; this was meant to be something to help me and others, not stress me out further.

anyway, here's saturday's post again:

My day today was like a bad episode of Eastenders with a bit of Casualty thrown in (this won't mean much to you if you're not in England, perhaps - one is a depressing soap opera, the other a hospital drama set in the emergency room).

I began the day again unable to move in pain and heard the children happily playing outside my door. Asking my Pre Pubescent Beauty to please take my Blue Eyed Boy downstairs and give him breakfast, I received a cheery reply and so I turned over, contemplating how I was going to get past their game, to the bathroom, to get some water to take my painkillers - this time they were in my room, but no water. I must get organised, or get back on a 24 hour patch to avoid this morning paralysis. I must take the painkillers, I was thinking, give it half an hour then try to get going. My daughter was due at my parents to do homework and various things; my son and I were meant to be going shoe shopping.

Anyway, the drama kicked off shortly after this. They disagreed about some small aspect of the game and PPB spiralled into a screaming fit which lasted half an hour perhaps; on the richter scale it was an 8 or 9, involving swearing, threats of violence, she even looked at one point as if she was going to hurtle down the stairs. I tried to keep calm and keep everyone else calm whilst somehow trying to take my pills; I could barely move for the pain and here I was dealing with a screaming ten year old. Twice more she calmed down and then kicked off again.

Turned out she was upset with Baby Daddy Number 1, a journalist cum musician cum piss artist who more or less dances to his own tune and has periods of being more or less involved in her upbringing - this being a 'fallow' period. He had called last night but given no indication when he might call again or see her. So she was taking out her rage on her nearest and dearest: us.

Eventually, many texts later, my Very Welsh Mother turned up, full of barely suppressed rage herself. Together we tried to convince my daughter to put her boots on and leave the house; she wanted discussion, analysis, consolation, cuddles, more and more attention; I had run out of steam and was no longer able to stand up. My poor 6 year old had opened his Lego box and was doing his best to block out the world. She then smashed his lego model and stormed out of the front door. 'Go after her!' I said to my mum, as I was still in my old tracksuit (having not had a minute - literally - to even think about a shower or getting dressed). 'FUCK OFF!!!' she yelled in my face. Then she stormed out into the road. I immediately ordered my daughter back inside the house and my mother to leave. I was shaking with shock. Never in my life has she spoken to me like this; and I hadn't done anything myself to provoke her.

I think we are all of us losing the plot. I'm really worried about my whole family, to be honest. There is a lot of illness around and a hell of a lot of stress. I think everyone is kind of imploding.

I collapsed on the sofa with more painkillers and curled up in a ball. PPB apologised and said she was shocked into silence. Quickly, she did the things on her list: literacy homework, music practise, tidying her bedroom, helping me prepare lunch... My father arrived later and took her to their house for a while and I was able, at about 3pm, to get into town with BEB, where the stress of shoe shopping actually seemed relaxing!

Bizarrely, once out of the house, I didn't need the toilet once, for 2 hours. Admittedly I was careful not to drink anything at all as I know how much BEB hates our embarrassing public toilet searches, but still. This morning it was every ten minutes. This made me think about the link between IC and stress. He commented on it too - 'you haven't needed the toilet once this afternoon, Mummy!' - which did seem to be the case on our two hour outing, tho the pain started again in the car on the way home.

So I've said - any more behaviour of this kind, no kitten. If it's pre-kitten, she won't be coming. If it's post-kitten, she'll be going to the cats and dogs home.

Harsh, but fair, I think, under the circumstances.

They were sweet tonight and went to bed after stories and cuddles by 7.30, my daughter calmly accepting her 'consequence' of no Saturday night TV.

I should've been miserable tonight as had to cancel a planned concert with one of my best friends (hope she got there safe!) because I just wasn't well enough. But my main feeling was relief. THANK GOD THE HOUSE IS QUIET! That kind of thing. And now a chat with my errant soulmate, and sleep; the best part of the day.