Poem about Pain: IC awareness day 15

Write a poem about your pain: the strain it puts on your relationships, the mental impact: no holding back!


Stuck

My knuckles are white as we sit in the traffic jam.
My children are in the back of the car, innocent lambs.
'Give it to me!' shouts one; 'no I won't, I had it first!' the other replies.
'Shut up!' I yell. 'Just shut up right now and let me drive'.

I am so loud and so sharp they both start to cry.
The car is silent now and my eyes are dry.
I stare ahead into the stream of stationery cars and wonder if I have time
To jump out, run behind a bush, or into a pub or a cafe,
To relieve this burning, this screaming inside of me.

Just then, the traffic moves. A few metres.
There is nothing I can do. If we are lucky, it will be fifteen minutes.
If not, it could be half an hour until we are home and I can reach the bathroom.

It feels as if someone has lit a fire just above my pelvis
And it is burning me slowly, painfully, cruelly
From the inside out.
I pop a couple of painkillers from the packet on the dashboard.
I swallow them quickly with some water and fix my eyes on the road.

'Mummy!' asks my little boy, wary now. 'Why did you shout?'
'We weren't exactly naughty', says my daughter, indignant. 'We didn't even mean it'.

I grip the wheel. The traffic is still again.
Do I tell the truth, water it down, or do I just lie?

'I am not feeling great,' I begin.
I can feel their disappointment, their resignation, their reluctant pity.
'I'm really in some pain. It wasn't your fault; I'm sorry I shouted so loud.'
'It's ok, Mummy,' they both quickly say together.
I make promises of cuddes and bedtime stories and maybe dinner watching TV.

But when I look in my rear view mirror, I see what this disease does to my children.
My daughter has her hand on my son's knee, silently comforting him.
He is sucking his thumb, which at 6 I constantly tell him not to do, but this time I say nothing.
She, meanwhile, is looking out of her window, her expression a rainbow of raw emotion.
They are not talking or arguing or giggling anymore.

'You know I'll be ok don't you?' I say, not wanting to have this conversation now.
'I'm starting this new medicine soon, which might really help.'

'You mean the one that makes your hair fall out?' she replies, without expression.
My six year old's eyes widen and he sucks harder.
You can hear the rythmic sound; suck, suck, suck.

We start to drive a bit faster.
The pain shifts to an urgency which is making me almost groan with desperation.
I have no choice; I look for somewhere to stop.
'Where did you even hear that?' I ask her briskly.
'I overheard you on the phone.'
'It doesn't happen very often,' I say, 'and if it does, it usually grows back',
'I love your hair,' says my son. 'It's the colour of the sun'.
I love my hair too. Now it's me who is crying, silently, squinting to see ahead.

We turn off the main road, at last. There is a hedge.
There are a lot of cars passing but we're long past the stage where any of us care.
I indicate and pull the car up on the verge.
I get out of my door, walk around to the passenger side.
I open both doors and squat down by the passenger seat,
I should be out of sight of the road and my children,
But if I'm not it really does not matter.

And now the worst: the hesitant bladder, at last free to relieve herself, will not shift.
I squat like this for one, two minutes. Feels like ten.
'Mummy, how long is this going to take?' asks one of them at last
I can't even hear who it is.
'We want to go home'.

'Look after your brother', I ask my daughter.
She must be able to hear the desperation in my voice.
'We'll read your special book together in bed later. But tell him a story now.'

She sighs, and thank God she obliges.
'Once upon a time, there was a dragon.
He lived upon a lonely mountain, breathing rivers of fire
And he was very, very hungry.
This was because he was not a mean dragon, so he never ate anyone.
In fact, he wanted to make a friend...'
And off they go into their imaginary world.
They go there a lot, these days.

At last my bladder opens and there is a rush of relief.
Everything spills out and again I feel ok.
I shut the doors and get back into the car.
For ten minutes now, I will feel 'normal', like anybody else.
By the time I get home, I will need to rush to the bathroom again,
Though the pain will be less intense because of the medication.

I hear the end of the story.
'The dragon and the bird were friends for many years.
Then the bird got poorly, and the dragon made him a nest.
He stayed with the dragon and did not fly south.
The dragon loved him and loved him and cooked him little treats
With the fire that he breathed.
And at last the bird got better.
Before he flew away he thanked the dragon.
It was your love that made me better.'

Before I start the car, I turn around to my children.
' I love you both so much, and I'm so proud of you,' I say.
They smile. They've got through this today; the crisis is over.
Mum is smiling again, and we will keep on keeping on.
But we all wish it was different.
That I could spread my wings again and fly.
That I begin to heal
That we have our happy ending.

sunday morning, in pain, and the kids are screaming!

So when you wake up on a Sunday morning in chronic pain and you are single, or married and childless, I suppose you can take your painkillers and curl up with a nice cup of tea, preferrably made by your loving partner, and listen to The Archers, or whatever takes your fancy, and nurse your wounds. Maybe a bath later, and a DVD on the sofa with a hot water bottle.

This morning it is somewhat different.

I have had to bribe Pre-Pubescent Beauty to 'look after' Blue-Eyed Boy, which does work, up to a point, but there is a price tag. The noise level is high, the TV is on continuously (which I never normally allow), food is definitely eaten but I'm not sure much of it was fruit, and the amount of play fighting eventually escalates into a full scale row which I then have to detangle and calm down.

We haven't reached the full scale row stage yet. We're at the manic pre-full-scale row stage. So I rang the landline from my mobile (literally the only way to get them into my bedroom as they can't hear me above the self-generated noise), and again I bribe them heavily to get dressed, make their beds and tidy up. Luckily I have some cute soft toys I bought for them as a treat for getting through their first full week at school when I bought a gift for my new nephew, so I can actually put my money where my mouth is for once.

Meanwhile I've taken 300mg of Tramadol and 30mg of DiHydrocodeine and a cup of peppermint tea kindly, eventually made by PPD, and am 'patiently' waiting til pain subsides enough to be able to have a shower, get dressed, and start the day.

We will go to a cafe, as I really do not feel well enough to cook, and we had pasta and pizza already yesterday - I'm not sure they can face beans on toast and I know I can't. Then we will go to the local soft play centre, where I can sit and drink water and read the paper and a toilet is within 50metres, and they can run around and play and burn off all the remaining energy.

Later we'll come home to finish homework and I will feel a bit better by then, as the painkillers will have properly kicked in and generally afternoons are easier than mornings...

While I'm glad we're 'coping', I feel sad that things are this way.

They weren't, a little more than a year ago. The play fighting and noise level and general semi-chaos was all there, but I was part of it, stomping around in my pink slippers like Bianca from Eastenders, tickling them, joking with them, maybe raising my voice if they started actually hitting each other (!), but basically we had cosy Sunday mornings all together.

Now, unless they choose to cuddle in bed with me, which is sometimes but not for long, I feel like some fucking Victorian cripple, ailing in an upstairs room while life continues below me.

Thank god they are 10 and 6. If they were 7 and 3, or 5 and 1, I don't think I could be living as a single mum in chronic pain.

As it is, we're on a knife-edge, though I don't think the children realise quite how much of a knife-edge it is. I do a good cover up job.

Clean Slates, with our names on

So I have a new kitten and a new nephew. Within hours of each other, these two brand new little blessings have arrived in my life.

We met the kitten yesterday and she is exactly perfect and I'm very sure we'll be bringing her home in a couple of weeks time.

My brother and his wife had their first baby in the night, a healthy boy, and I'm finally an Auntie! Woke up to a text message: 'IT'S A BOY!!!' .

How did Sylvia Plath put it - ' a clean slate, with your name on it?' .... Two new, beautiful arrivals to our family.

Good things haven't been happening very often lately so it's brought us a bit of joy. In fact, it's brought my children a LOT of joy (they've been wanting a kitten for years, ever since we were all set to get one last year before I was rushed to hospital, and they really wanted a boy cousin) and for me a glimmer of hope that things might just start to improve.

I'm really going to work on focusing on the good things and not going over and over what is wrong.

With the chronic pain, that's pretty hard to do, as it is going on all the time, so self-pity is always there, waiting in the wings, ready to suffocate you with its thick black smoke. Poor me, poor me, poor me; why me, why me, why me; you bastard, you bastard, you bastard...etc...

But this kind of thinking is not going to get me better, and it is certainly not going to make me happy.

This morning I am grateful and happy to have two sweet new members of our family; welcome to the world. Life goes in circles and cycles; after the dark, comes the dawn.

I am going to practise staying in the moment, in the day, and not giving up hope, however tough that may be.

IC awareness day 14:when pain lets up

Describe that exact moment when the pain lets up...even just a few notches...and you get to experience some sense of relief. Be super uber descriptive!

The best experience I have of this is in water. In the bath; or recently in the ocean. The horrible gnawing burning desperate feeling just disappears and I feel like myself again. I need to become a mermaid maybe.

I also take a lot of painkillers. I was on Buphrenorphine and Fentanyl but wondered if they were contributing to hesitancy so switched back to oral painkillers. When I try to stop, or cut down, I am in such bad pain I can hardly move. I am curled up crying with the burning pain of it. This scares the hell out of me. At the moment, I'm using Tramadol and Dihydrocodeine and Diazepam for pain and muscle tightness. So sometimes, the pain gradually lets up this way. But there is no moment. Just a dulling of the intensity.

The water is the best thing. I wish I could just swim and swim and keep on swimming and sometimes like tonight I just feel like giving up. This battle sometimes feels like one that we just cannot win. Why is this happening? Why does nobody understand? How the hell am I supposed to deal with it? Tonight I had to rush my daughter out of the bathroom so I could pee because it was suddenly excrutiatingly painful. This pain disappeared with two Dihydrocodeine, two Valium, a hot water bottle on the sofa, some herbal tea and a hot bath. But I know it will be there in the morning. I want and need to be healed. I just want to know how.

school yummy mummy bullshit

'Yummy Mummies'. I hate them almost as much as I hate extremists who shoot loads of people for no reason or bigots who attack people because of the colour of their skin. I really, really don't like these women. They gossip, they pander to their ridiculously arrogant husbands, they take half an hour to park their planet -polluting 4 by 4s which they can't even drive and don't even need because they live in the city!!!

Three examples of things that have already wound me up since term re-started

1. 'How are  you? I have to say, you look really well! Have you tried medical herbalism? / 'Poor you, it must be dreadful not having a husband and being so ill, you must be very miserable' / 'You look great - I'd heard you were really ill again but must be mistaken!' and so on, and so on. All from virtual strangers who only think they can speak to me like this because their children are in the same class as my children!!!!!

2. On the class email list, my name is misspelt. Twice. My first name, and my surname. If you've been following my blog you'll know I was going to be the class 'rep' for this year but had to pull out because of this bloody illness and consequent exhaustion and time starvation. The new 'rep' has hardly said a word to me or taken note of any of the things I had to hand over to her, and I have now emailed her twice about this, and she just ignores it. What to do! March up to her and demand that she listen to me? Rise above it? Give me strength!!!!!

3. In a homework meeting for my ten year old. Discussing literacy homework being done in a pen. 'They can all just use their fountain pens, can't they,' says the yummiest mummy in the room, aged about 50 but trying to look 40 with expensive cream, botox and designer clothes (my kids are at state school, but it's mostly a posh catchment). 'I think that's ridiculous,' I hear myself saying. All eyes are on me. It's as if I've said 'I have leprosy and you're all going to catch it.' 'Not all of us can keep on buying £30 pens that get lost or stolen or broken, so that's not what I will be doing this year; we don't all have money to throw around'. My mum was there with me. Now my mum and I have a lot of issues going on at the moment (when don't we?), but I glanced at her after I finished speaking, and I swear I saw her look proud.

I'm a scummy mummy, and proud!!! Why are these people so unbearable??!!!

It's about a quarter of the mums in the school. The rest, the majority, are actually quite nice, and some are really nice. I do have some good acquaintances, friends even, specially amongst the mums in my son's class who are more down-to-earth (relatively speaking). But these yummy mummies. What to do with them? Round them up and pack them off to the colonies, I say.

So that was my rant - had to get that off my chest today. So good to have a room of my own, to scream - the best way I can scream is with words.

IC awareness day 13: how to make people 'get it'

What would you say to a close friend or family member to try to get them to understand more about your IC struggle. Don't use anything you've ever used before. Try a completely confident approach and something that people not of our "IC world" can relate to and think outside of the box

I look women straight in the eye and say 'have you ever had cystitis / a bad UTI / soreness after sex?'. 95% of them say yes. I then say, without blinking, 'that's what it's like all the time. Only worse. Because every time I drink anything at all and my bladder fills up, it is agony, and I have to pee right now. As if you are stuck in traffic and desperate; it can take me fifteen minutes to reach that state'. That usually gets them, when it sinks in.

As for men, I ask them if they have heard of that strange little Amazonian fish that swims straight up the inside of the penis and causes extreme urinary pain, urgency and discomfort. It can even kill, rarely, though usually 'just' causes horrendous cystitis symptoms. They say no, usually, though some say yes. Always they grimace, as if they cannot imagine anything worse. 'Welcome to my world', I say.

I keep looking into their eyes; I refuse to apologise for my condition or defend myself or make out that it is less bad than it is. This approach usually works, after a while, though sometimes I just encounter total horrified disbelief. 'No, really,' I persist. 'That's just how it is. Some days are worse than others, but that's what IC is for me.'

I wish more people already knew. I wish we had to explain less and meet fewer blank stares. I wish that we didn't have to have these conversations all the time trying to justify our IC struggle. Then again, there's only one way to spread awareness, and that's to keep on talking.

what do you do when your friends don't understand?

So what do you do when your friends just don't understand? When they think you're just feeling sorry for yourself, exaggerating the severity of this thing, dramatising the situation? They're too busy; they don't return your calls; they don't want to put themselves out for you - why should they?

One thing about having Interstitial Cystitis is that it has affected all my friendships, either positively or negatively. It has either brought people closer, or pushed them away. It has - at different points - been interesting, consoling, and upsetting to observe this process.

Today a friend I love was texting me saying how happy and busy she is and that she didn't know when she would have time to meet up if I couldn't come to visit her. While I was happy for her good luck and fortune, there was a part of me screaming 'but what about me??' I'm not sure she understood how hard it would be for me to travel to see her. It's about 30 to 40 minutes bumpy drive, so would have to stop at least twice to pee, and I would be in constant pain while there, and then I would have the journey home. I would do it if there was no other option, but there are other options, and I was sad that me and my kids didn't seem to be a priority anymore. I miss her, a lot.

I don't think people understand this thing at all. It's not like ME, which I've had in the past and still suffer from up to a point. I know ME is horrific. But I'm not just woozy, aching, tired all the time - I mean, I AM tired all the time, but that's because I'm up most nights on the toilet except for if I take a pill to knock me out which then makes me tired all the next day anyway.

In addition to chronic exhaustion, I have specific, intense, burning pain pretty much all the time. If I don't take my painkillers I literally cannot move very far, only to a hot bath or the sofa with hot water bottles/ice packs to hand. I am on the toilet, at best, once an hour. At worst, every fifteen minutes. It hurts so much if I'm stuck in traffic; it can make me cry, trying to hide from the children how much bladder pain I am in. This is not how you expect your life to be at 35.

How the hell do you explain that to good friends who have become distant? Do you send a mega long text message, which ends up full of apparent or real self-pity? Do you write a letter, all about yourself? Do you post links to random websites about IC???

I end up just throwing my hands up in despair. And leaving it to the fates. Those people who want to stick around, will stick around.

When I was really ill last autumn, I pushed everyone away. One loyal friend refused to be pushed, and would turn up anyway, even when I weighed 7 stone and was hardly speaking. Several loyal friends held the space and just waited patiently till I was back on my feet. But some people who I really counted as close friends have either completely disappeared (perhaps they wanted to anyway, and this was a good pretext?) or backed off so completely that they may as well have gone.

It is hard, the way that some people just can't 'do' illness. For me, it has never been a problem. I'm good when other people are ill, except for when it is contagious, which I find more difficult (it's an issue in a big area of my life, but more on that another time). I like helping out and being useful and feeling like I'm doing good stuff for my friends. I don't get frustrated when people feel sorry for themselves. I understand it. I mean, if you're in constant pain or discomfort, or you've just had an operation, or your quality of life has suddenly diminished from pretty good to bloody awful, you're sometimes going to get pangs of 'why me?', unless you're some kind of saint. I don't mind giving, and I don't mind being around ill or dying people.

I guess we are all different. Some people just can't, or don't want to, handle it. And that is ok - it has to be their free choice. I just miss the people I love who were in my life a year ago who are not now. A few close friends, I really miss. I'm not sure they will ever be coming back, for various reasons. But people move on. Some are here for a reason, some for a season, and all that.

I am happy that some unexpected people have got closer to me during this past year, and that my life has become simpler. The friendships I now may be fewer, but they are genuine, and real, and invaluable.