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.

Thursday 21 August 2014

Interstitial Cystitis Awareness Month

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Tell people about our illness. Make them laugh, make them think, make them stop in their tracks. Dye your hair blue or paint your nails; we feel blue all the time so lets get it out there.... Write something.... Put up a poster or two in your local area.... Connect with fellow ICers.

I definitely found last year that IC awareness month did cheer me up and I saw some positives in this horrible condition.

Don't give up, even if I sometimes feel like it, I don't.

trapped screaming inside my bladder, computer, house, life as a mummy

So today:

I bought a laptop with windows 8 which I know I won't be able to use and it will leave me in tears rather than enable me to write more either cathartically or for work or both. Instead I will spend all my time trying to make another stupid computer work.

I overreacted to the above because my bladder was burning burning burning all through the PC world hobbit man (Gollum was right about Sam all along, it seems) talking me through endless possibilities and impossibilities and all I wanted was a toilet. The nearest one was in McDonalds and I hobbled there after 2 hours of searing pain. I had bought the wrong laptop. I didn't care because finally, here was somewhere I could empty my bladder. it took about 5 minutes before my bladder would relax as my muscles were so tight. Outside, the great British public were eating their greasy burgers, shouting at their kids, knocking on the door ('she's not disabled, is she?').

I started driving to my acupuncture appointment when my daughter rang. She told me some upsetting things about her father bullying her , which I reacted to by shouting at him. I stood up to him, telling him he couldn't treat her like that, not anticipating the reaction. His reaction was to explode. Completely explode. At her; at me; shouting; spitting down the phone. He then starting calling me a 'stupid fat bitch', within her earshot, at which point, unbeknownst to either him or to me, she ran away; ran crying from her aunt's house down to the harbour in the Cornish village where they are staying, and got lost. Meanwhile I was apologising to her control freak bully father, talking him down, pandering to his ego, oh I'm so so good at that part, I've been playing it all my life...

Shout at me; I'll apologise. Criticise me; I'll capitulate. Put me down; and I'll shrink into a little ball.
I've spent my entire adult life around men who bully and abuse me.

So I calmed him down enough that he didn't yell at her or me anymore, or just dump her in the car and drive her home and dump her on my front door. Not because I didn't want to (though if I'm totally honest, a part of me was screaming 'I need the fucking rest and I have medical appointments in the next 3 days which I've arranged thinking I don't have the children here!!!!') because I want her with me if she is upset and part of me right  now at 1am wants to just get in the car and drive there and scoop her up.... but because she does not need a Daddy crisis 2 weeks before starting secondary school. If things are still bad, I was thinking, we'll get her at the weekend. So I talked my beautiful daughter's ugly father down from the edge of his semi-psychosis; and then 5 minutes later, the phone rang again; again I pulled over and my daughter said 'Mum, I ran away from them; I'm in a phone box'.

I had to spend 20 minutes sorting it out from miles away while her father's phone was switched off; I even found a local taxi company who were going to pick her up, when we finally got through to him and he went to collect her.

She told me later on the phone that her apology to him was 'fake'. She hates his girlfriend (Polish, conventional, hard as nails, and that's all I know; I haven't met her. but apparently she handed my daughter a brown paper bag, after insulting her and her mother, and told her to breathe into it to stop the hyperventilation) and is starting to hate him. I told her to stick it out until the weekend if she could; she is ok as her cousin is with her and they're camping. She said 'if you give Daddy a fake apology he's ok'. Something I found out in the 3 years of verbal, emotional and physical abuse I endured while living with him. He slept with 5 other women during the first year of my daughter's life. I kept saying it was ok, because look at me, how fat and disgusting I am, and how  I have trapped him into this life he hates....

Came home and cried and sat in a bath for 2 hours reading and cried some more and tried to eat and drank a little bit of gin and watched some tv and stared into space......

So what shall I do for IC awareness month in September? Dye my hair blue before it falls out from the Elmiron? Write an article and hope that somewhere publishes it, if I can get my computer to work? Sit and cry every night and just GIVE UP BECAUSE THIS FUCKING ILLNESS IS NEVER GOING TO GO AWAY AND I HAVE NOBODY TO PUT ME FIRST AND HOW CAN I GO ON
WHEN I NEVER GET A BREAK?

I want a break from all of this. I want SILENCE. I want to wake up in heaven and it all be behind me.

Tuesday 12 August 2014

school holidays vs chronic illness

last week my children were away for a week, and I let my body do exactly what it needed to do. which, it turned out, was mostly to sleep, rest, eat (and drink the green sludge I'm making myself have twice a day in the hope it 'alkalinises' me), sleep some more, meet up with a few friends for a little while til I got tired, watch films, sleep, have long baths, sleep.... take the painkillers when I need them.... let my body dictate..... you get the idea...

now this week is a different story. the children are home, and full of endless energy, which I refuse to numb just by leaving the TV on the whole time, tempting though that is....

Pre-pubescent Beauty is gearing up for secondary school in a few weeks' time, which involves - in no particular order - obtaining endless items of 'cool' clothing even though I'm broke, stocking up with stationary, school books which she needs, bags, shoes... sewing nametapes on uniform (haven't actually started that one yet)... being proactive on 'playdates' (do they still call them that at 11?) so she'll have some allies when she gets there and also the reassurance she still has good home friends too... having endless conversations about boys, puberty, boys, health, puberty, boys, boys .....

meanwhile my Blue Eyed Boy returned from a ten day stay with his Daddy's family , during which time he seems to have mostly been playing computer games, though he has , apparently, learnt to ride a bike, which I haven't witnessed yet but am sure is true if he says it is true... he has returned feisty and full of beans, and as I reduce the computer games schedule rapidly, replacing it with outdoor play, artwork, lego etc, he says 'I want to go and live with Daddy'. Which hurts. he doesn't means it, and I know it, and he knows it, but boy does he know how to press my buttons. We have one, old , clapped out laptop, and no ipad, and no smartphone even, and definitely no minecraft. ...

It seemed to go something like this last night: 'let me play on my DS for ten hours a day mum or I'll say really hurtful things which will run through your mind in the wee (get it?) small hours when you're trying to creep to the bathroom quietly without waking us'. now obviously I'm not going to let him play on the computer/ screens for more than an hour a day max, and to me that seems loads. what happened to 20 minutes? but things have been so bad with his dad this year, I decided just to let them do what came naturally. which obviously was playstation /xbox/ minecraft.

So. The 3 of us have conflicting needs, and as the mum, I'm the one who has to sacrifice, I'm the one who has to smooth things over and make it all ok. Which I'm doing my best to do. But it's hard. I just want to go back to bed!!!

Saturday 2 August 2014

back, back, and back (not on crack but on valium/zolpidem/fentanyl oh and the joy that is Elmiron ....)


First I owe you all a big apology.

Sorry if I worried you or pissed you off in my absence.

It has been too long.

Much too long.

Living has been hard enough , scraping myself through the days, and writing has felt a step too far. I want to start writing my creative stuff about my teenage years but right now even writing this blog has felt overwhelming. But I'm back. Perhaps a self-help book on living with IC, specially a UK version, might be really helpful and a good way back into writing; what do you think you lovely readers?

I hate leaving long breaks in blogging because there is no way to dance back into it as if you've never been away, or to do an 'update' which encompasses everything...

Suffice to say, without being too depressing for 3am on a Saturday morning (kids away and I can't sleep for bladder pain), my IC and my children, in that order, sadly, have been dominating my life.

I am so entirely ruled by my bladder pain right now (toilet at least every hour and burning pain as bladder fills up) I often think of ending either my life or my bladder. My very practical new consultant thinks the latter is of course preferable to the former, and in the meantime has got me onto an alkaline diet - as much as I can manage. I'm not much of a cook, but I am eating a lot of green stuff, and green drinks, and green supplements like Wheatgrass and so on, and have cut out inflammatories such as alcohol, caffeine, citrus, spice, and most gluten and dairy also...

Which has done FUCK ALL, although sustained over 6 to 8 weeks, which is depressing....

Also, and not without some reservations, I've started back on Elmiron. The big gun. I asked myself again, would you shave your head to get rid of your IC; the answer being yes, I had no more arguments. The rectal bleeding, should it reoccur, will be scary, but then they've checked that all out and found nothing ominous so it's a case of being brave and trying to get at least to the 3 month mark - I only managed a month before in Jan as you might remember.

For you non- ICers who read my blog(I know you're out there!), it takes at least a few months for Elmiron to work if it is going to, which is usually in about one in three cases. Then, you are left with a problem of success, as it's a hefty drug and it only helps your bladder while you are taking it. But i'll cross that bridge if I need to. It would be so wonderful just to find something that works. If Elmiron has worked for you, please do leave me a comment, be good to hear your story. Also anyone with dietary recommendations...

Have the option of installations too at new, better hospital (further away, but I've given up on my hopeless local hospital for treating my bladder and found a better, hardcore female consultant).

She talks openly about bladder removal as a last option. I'm not there yet, but I can imagine in ten years time, I would be. I can't imagine ten more years living like this, though.

The worst thing people keep saying is 'well at least it's not terminal'.

It's like you fucking morons, if it was terminal, at least there would be an end in sight. you don't comfort someone being tortured by saying oh well, at least it will never end.....

Well, this seems to be a rant about IC, medication and all things related.

So be it.

That's where my head is at.

Thank you all for not deserting my blog and for reading over and over my past posts; my readership seems to have kept up despite my absence. I really do appreciate and love your comments and if I haven't managed to reply yet, I will.

Rainbowgirl xxx