About Me
- rainbowgirl
- 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.
Monday 26 May 2014
Needed: an Norton Anti Virus Tool for my bladder please
Earlier today, my computer was dying.
I was seriously contemplating having to buy a new laptop, after throwing this one out of the window. On top of several other external things that have gone wrong on top of the relentless IC, this was a step too far, in the past 48 hours.
And then I found the wonderful, polite, helpful Bharaswazi R J, on the Norton Chat Support Forum. Somewhere in a huge call centre near Delhi, he settled down to help me.
I had no idea that this feature even existed, but in desperation I 'sat back to let the expert help' (don't have much faith in doing that anymore funnily enough).
I signed over remote control of my computer to this amazing guy and within an hour, he had totally fixed the problem, whilst giving me more reassurance than any urology specialist I've had the misfortune to meet over the past year and a half. He kept telling me 'everything will be fine, madam;' and it was, it was fine, it was fixed.
Why, in 2014, can we fix ailing computers but not ailing bodies?
WHY is more money not being poured into healing our ill internal organs rather than increasing the speed and ease of our internet connection?
It's ridiculous.
Laugh or cry; I feel like screaming.
But at least I've got my computer back again. If only bodies were as easy.
Thursday 22 May 2014
still here
just an update to say still here; have not felt well enough to write - horrible flare up of symptoms again in the past few days, after some better days last week.... just crawling through the hours really..... such has my life become. loving my children and hanging onto that love... trying to see the flickers of sunlight in the raindrops....
will write when feel more up to it
Tuesday 13 May 2014
Monday 12 May 2014
in defence of the departed
https://www.youtube.com/watch?v=kY3v2KQkGmE
This is Peaches vs the ghastly Katie Hopkins explaining and defending Attachment Parenting on This Morning. A dedicated, passionate mum if ever I did see one. I just wonder what on earth was going on beneath the surface.
This is Peaches vs the ghastly Katie Hopkins explaining and defending Attachment Parenting on This Morning. A dedicated, passionate mum if ever I did see one. I just wonder what on earth was going on beneath the surface.
RIP Peaches and the carefree indifference of the 1990s
http://www.youtube.com/watch?v=6CfxkFj8iAg&feature=kp
Bob Geldof looks just grand in this video. Watch the dancing guy back right, who stands completely still then just watch his feet go.
Bucket list 1. Go to Ireland.
Bob Geldof looks just grand in this video. Watch the dancing guy back right, who stands completely still then just watch his feet go.
Bucket list 1. Go to Ireland.
not bothered
To all the school beautifully-manicured, bored-shitless, bitchy-as-you-like yummy mummies
I'm not bothered by your blank expressions when you ask me whether 'everything is better now' and I say 'no'.
I'm not bothered by your 'my child is better than your child' small talk because I know it to be a lie and even if it were true, I wouldn't be bothered. Children aren't possessions to be compared at the school gate you fools.
I'm not bothered that you shop in Boden and The White Stuff and Jigsaw and wear matching boots over skinny jeans over a body that you work out much too much because your face has had it. I'm not bothered that you'd rather be a size 6 than be pretty.
I'm not bothered that you think I'm fat.
I'm not bothered that you talk about me behind my back.
I'm not bothered that you are bothered by how bright and sparky and successful my children are because you'd love it if they weren't; then it would give you more to gossip about.
I'm not bothered that I can't, won't ever, and have no wish to drive a fucking 4 by 4. In . A. City. Or anywhere else.
I'm not bothered that your uber-husbands are rich, successful and (occasionally) vaguely handsome; they're probably sleeping with their secretaries behind your stupid backs.
I'm not bothered if you pity / laugh at / despise / pour scorn on / even like me. I'm just not bothered.
Think what you like. Say what you like. I used to care, I really used to care, but now, I just don't.
I'm not bothered by your blank expressions when you ask me whether 'everything is better now' and I say 'no'.
I'm not bothered by your 'my child is better than your child' small talk because I know it to be a lie and even if it were true, I wouldn't be bothered. Children aren't possessions to be compared at the school gate you fools.
I'm not bothered that you shop in Boden and The White Stuff and Jigsaw and wear matching boots over skinny jeans over a body that you work out much too much because your face has had it. I'm not bothered that you'd rather be a size 6 than be pretty.
I'm not bothered that you think I'm fat.
I'm not bothered that you talk about me behind my back.
I'm not bothered that you are bothered by how bright and sparky and successful my children are because you'd love it if they weren't; then it would give you more to gossip about.
I'm not bothered that I can't, won't ever, and have no wish to drive a fucking 4 by 4. In . A. City. Or anywhere else.
I'm not bothered that your uber-husbands are rich, successful and (occasionally) vaguely handsome; they're probably sleeping with their secretaries behind your stupid backs.
I'm not bothered if you pity / laugh at / despise / pour scorn on / even like me. I'm just not bothered.
Think what you like. Say what you like. I used to care, I really used to care, but now, I just don't.
Tuesday 6 May 2014
IC suicidal ideation
I haven't written much, because there are not many words right now.
I am keeping on keeping on keeping on.
I am wading through the days, like thick mud. I am caring for myself and for my children as well as I can. I am doing the necessary things. I am caring less and less about the outside world; about anything, very much, except what is absolutely necessary.
My blinkers are on and I am plodding onwards with still the very best part of the day being when I can take a tranquiliser and go to sleep so that there is no pain for a few hours.
Sleep is a little death , who said that? I can't remember. I am reading and reading and reading, but I remember less and less.
It is as if everything is falling away and I am in the world but not of it. Things that mattered just don't matter anymore. The only things that still matter, that always mattered, are my children.
I have become slightly obsessed with Peaches Geldof. And I have to ask myself why. It is not as if I was obsessed with her while she was alive. But I think what she did was brave. If indeed it was intentional. And yet that leaves two little children with no mummy; how can you square that with yourself?
One in four people with IC think about suicide a LOT. I read that somewhere. And the rate is 10% higher than in the population as a whole. Ideation, where you simply imagine death as a blanket covering you, like a permanent sleep, is common too, because there is no pain. NO PAIN. imagine that , if you suffer from chronic pain.
Sometimes I have even got to the point of resenting my children for keeping me tethered to this world.
And that scares me, too.
My daughter asked me, in the wake of her Grandma dying, why everyone we love has to die. As I tried to comfort her, she turned to me and asked me 'Mum, with all that you suffer, don't you ever think it would be better just to die? If you didn't have us?'. ' But I do have you,' I replied. 'But what if you didn't?'... 'But I do,' I repeated. 'I do not deal in imaginary scenarios, sweetheart, only in realities. I do have you and so that's that'. But although I tried hard not to lie to her, not to tell an outright lie, there was a lie in my words.
Because the thought of just not being, not carrying on, not waking up in pain and going through the day in pain and getting up to the bloody school to realise I will either have to pick the children up as quickly as possible in pain or look for a toilet urgently (there isn't one that parents can easily use without embarrassment of one kind or another), not holding conversations where I can no longer focus on what the other person is saying because all I am aware of is my bladder.... is so alluring. It is like a siren's call: not to be, not to be, not to be.
I'm pretty sure that's what Peaches heard and I think , in a way, it is gutsy to do what she did.
And yes, I know all the counter-arguments. But that's still what I feel.
When you have to force yourself to keep on living, what kind of a life is it anyway?
(The antibiotics are not working, by the way; or perhaps there is a 5% improvement; it's so hard to tell. But it's basically the same. And I know I can't live for thirty or forty years like this and moreover I know that I don't want to.)
So where is the choice?
When we no longer have a choice, what new fresh prison hell is this IC life?
I am keeping on keeping on keeping on.
I am wading through the days, like thick mud. I am caring for myself and for my children as well as I can. I am doing the necessary things. I am caring less and less about the outside world; about anything, very much, except what is absolutely necessary.
My blinkers are on and I am plodding onwards with still the very best part of the day being when I can take a tranquiliser and go to sleep so that there is no pain for a few hours.
Sleep is a little death , who said that? I can't remember. I am reading and reading and reading, but I remember less and less.
It is as if everything is falling away and I am in the world but not of it. Things that mattered just don't matter anymore. The only things that still matter, that always mattered, are my children.
I have become slightly obsessed with Peaches Geldof. And I have to ask myself why. It is not as if I was obsessed with her while she was alive. But I think what she did was brave. If indeed it was intentional. And yet that leaves two little children with no mummy; how can you square that with yourself?
One in four people with IC think about suicide a LOT. I read that somewhere. And the rate is 10% higher than in the population as a whole. Ideation, where you simply imagine death as a blanket covering you, like a permanent sleep, is common too, because there is no pain. NO PAIN. imagine that , if you suffer from chronic pain.
Sometimes I have even got to the point of resenting my children for keeping me tethered to this world.
And that scares me, too.
My daughter asked me, in the wake of her Grandma dying, why everyone we love has to die. As I tried to comfort her, she turned to me and asked me 'Mum, with all that you suffer, don't you ever think it would be better just to die? If you didn't have us?'. ' But I do have you,' I replied. 'But what if you didn't?'... 'But I do,' I repeated. 'I do not deal in imaginary scenarios, sweetheart, only in realities. I do have you and so that's that'. But although I tried hard not to lie to her, not to tell an outright lie, there was a lie in my words.
Because the thought of just not being, not carrying on, not waking up in pain and going through the day in pain and getting up to the bloody school to realise I will either have to pick the children up as quickly as possible in pain or look for a toilet urgently (there isn't one that parents can easily use without embarrassment of one kind or another), not holding conversations where I can no longer focus on what the other person is saying because all I am aware of is my bladder.... is so alluring. It is like a siren's call: not to be, not to be, not to be.
I'm pretty sure that's what Peaches heard and I think , in a way, it is gutsy to do what she did.
And yes, I know all the counter-arguments. But that's still what I feel.
When you have to force yourself to keep on living, what kind of a life is it anyway?
(The antibiotics are not working, by the way; or perhaps there is a 5% improvement; it's so hard to tell. But it's basically the same. And I know I can't live for thirty or forty years like this and moreover I know that I don't want to.)
So where is the choice?
When we no longer have a choice, what new fresh prison hell is this IC life?
we are all alone anyway so what's the difference who's with you
I realised the other week, in conversation with the herbalist I've sought out to help me alongside the antibiotic therapy I'm trialling, that I have been alone without a man for months and months. For the first time in a very long time. And isn't it ironic, and sad, that I only now realise the value of not depending on another person fully; that I realise that their leaving isn't going to kill me; a lesson I might have learned years and years ago when I was healthy and could have done so much.
But it is only this hideous experience of long-term chronic ill health which has taught me that in fact we are all alone anyway; we are all born alone and we all die alone; everyone, even our children, are just people we are with somewhere along the way.
It is sad, so sad, that I have learnt this lesson only now, perhaps too late to ever put it to any good use.
But it is only this hideous experience of long-term chronic ill health which has taught me that in fact we are all alone anyway; we are all born alone and we all die alone; everyone, even our children, are just people we are with somewhere along the way.
It is sad, so sad, that I have learnt this lesson only now, perhaps too late to ever put it to any good use.
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