About Me

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This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.

Saturday, 26 October 2013

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.

Tuesday, 22 October 2013

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.

Sunday, 20 October 2013

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.

Friday, 18 October 2013

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.

Thursday, 17 October 2013

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.

Sunday, 13 October 2013

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!)

Thursday, 10 October 2013

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.

Tuesday, 8 October 2013

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.




Saturday, 5 October 2013

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.

Thursday, 3 October 2013

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.

Wednesday, 2 October 2013

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.