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.