IC awareness day 20:diagnosis

What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of us to relive, it's important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I'm sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they're not alone.

I was seriously ill last autumn from September to November with Cryptosporidium and Gastritis. I was in hospital for a month and had severe stomach and bowel problems and was dangerously underweight. Then, just when I was turning a corner in my recovery mid-November and being able to eat, the bladder symptoms began. One night, out of nowhere, bad pain when I urinated. There was nothing on the 'dipstick' at the doctors surgery so they sent me away but the symptoms continued. For a couple of weeks I did nothing but the symptoms got steadily worse. 

Sure I had a UTI, I insisted they send a sample to the lab and sure enough it found some 'Ecoli'. They started me on one antibiotic, which did nothing. Then another, and another. Then stronger ones - I remember Cephalexin, and Ciprofloxacin. All the tests by now were negative, negative, negative. I had a full sexual health screening. I became convinced it was some sexually transmitted bug they don't test for, but which can give UTI symptoms, so I pushed to be tested for these too. By January I was getting desperate. I needed an answer. The STD doctor was very unsympathetic and thought it was all in my head - due to upset over breaking up with my partner! I was referred to a kidney specialist who knew little about IC, and thought I had 'urethral syndrome', but referred me on.

The consultant urologist I ended up with has been thorough, scientific and detached. We tried as much antibiotic therapy as we could, ruled out other causes, and at that point he said ' I need to have a look at your bladder'. This was March, and by April he'd found mast cells++ and chronic inflammation in the lining and detrusor muscle and diagnosed me with IC - something which prior to the rigid cystoscopy he'd thought 'very unlikely' as there was no blood in my urine. But there it was. Once he saw with his own eyes and had the biopsy results, that was that. As yet, we have found no way to help me other than painkillers. Am waiting to see if I will be able to take Elmiron - we've applied for it (not licensed in UK) and awaiting the answer.

As yet the diagnosis has led to nothing positive and I still remain utterly confused as to the cause of my IC or the cure. In some way it was linked to my immune system being depleted and in some way to the bacteria that must have spread from my bowel - perhaps my bladder got inflamed and then has just stayed that way, unable to heal itself for some reason. That is my story. Don't feel you are alone in this nightmare. And worry if diagnosis is taking a while; it's not the end when they diagnose you, it's the beginning.

your bladder in the mirror. IC awareness day 19

Your bladder crawls out of bed in the morning, makes its way to the bathroom to brush its teeth and relieve itself and catches a glimpse of itself in the mirror. What does it see?



My bladder is female. If she saw herself in the mirror she would be appalled. She is red, raw and covered with tiny pinprick cuts. She is hurting but any cream, any ointment will only make her feel more sore.

She is clutching the sink, struggling even to keep looking at herself as she is so horrified by what she sees. She is disgusted with herself. She used to be helpful, to have a purpose. She has now, over the past year, become a torturer, a sadist; she lives inside a 35 year old single mum with two small children and a life to lead and every day she hurts and torments her and makes her life almost unbearable.

But it is not her fault, not really. She only gives out pain because she is in pain herself. She only hurts because she is hurt.

What she wants, more than anything, is to get better. She just wants to be 'normal'. But it's been so long, she can barely remember what 'normal' is.

tramadol toxic bitch nightmares

so I wake up sweating this morning... but freezing cold... half 6am and I am in too much agonising bladder pain to reach the bathroom and I need my Tramadol which is in the bathroom cabinet and is running out anyway.... what is the matter...

gradually my dream comes back to me.... why why WHY are you so stupid so fucking useless you're in deep dark grey ocean drowning you are not working why are you not working you stupid cow..... what is wrong with you.....

your family protect you too much, they always have, you spoilt brat, stupid fucking spoilt brat, cut your hair, shave your head, SHAVE YOUR HEAD, don't you hear me, you'd be better off dead....

so this is it, i am finally drowning turning my head this way and that... trying to breathe my lungs filling up with water, is there not some reason to go on, is there not some reason to swim? am i not somebody's mother, somebody's daughter?

then suddenly we are on land, i don't understand but here is the man i respect most in the world, the head of my family, the admiral of the fleet. at a table. he is pouring out wine, from a glass tumbler. 'i just feel so tired all the time,' he says, his eyes are sad. he is giving up.

and all the time my TOXIC FRIEND her words in my dream burning my ears, i'm better than you, i'm better than you, stupid cow, spoilt brat, whining, whingeing, your family have always protected you, most people have to work for a living.... you failure, you loser, you nothing, you are worth NOTHING can you do NOTHING CAN YOU REMEMBER NOTHING

and i wake up coughing up the water in my lungs and shivering from the seaweed draped all over me thinking what is the matter with me what is THE MATTER with me? why don't i have a job why am i not married why am i not normal?

Then i remember. I have never been normal. And now I have a serious chronic illness. And before that, I had a seriously fucked up relationship. And before that - there was always something, some reason, some delay. There was always something wrong. I had too much going on. I didn't realise I had to get things together TODAY because I didn't realise I was about to get IC. I didn't realise the urgency because I had no idea I was about to become disabled by disease. Like so many innocent people in their late twenties and early thirties, I thought I had the luxury of time. If I'd have known, I'd have prepared.

Even if I HAD got things sorted and DID have a job when I'd got this illness, I wouldn't be able to work now, anyway, would I? Some days it is a struggle to move; some days, like today, I'll be texting round the school mums seeing who can take my children to school as there is no way on earth I'll be well enough and ready to do the morning school run. I wish I had a husband, though, I wish some other adult was here. I do wish that, but then my life has never run smooth.

And when my daughter was young and my son was a baby, before it all got too much, I worked, didn't i? I am waking up now, gradually, trying to remember. I was a writer; I was a teacher. And didn't I get a good degree from a top fucking university? Didn't I get straight A grades in my A levels and all kinds of awards and scholarships? Wasn't I just as clever and beautiful and smart as my beautiful daughter? It all feels so unreal, like that life happened to someone else.

And now I'm an unemployed single mum with two kids, just struggling to survive, just doing my best, shivering in bed at 6.40am, needing to reach the bathroom; alone.

And I will be ok if I can just reach the bathroom cabinet, the medicine, the toilet, my kids..... for this hour I will be ok. I hold onto the door, I hold onto the bannister, I half grope, half crawl my way into the bathroom, and I bolt the lock.

waking in tears: total antibiotic despair

 

Reading Catherine Simone's 'To Wake In Tears'.She had IC a bit worse than I have it, but not much. I was enjoying the empathy, and she writes brilliantly on the isolation of IC and how neither doctors nor friends nor family understand and how some people just think you're bonkers. I considered myself lucky with my consultant urologist after reading about her experiences. But when I got to the part about how she improved her symptoms with antibiotic therapy I started crying myself!

I was sitting outside Pre-Pubescent Beauty's Maths coaching earlier and suddenly I was filled with desperation, despair, total and utter depression. I was feeling quite positive earlier after the acupuncture but all I wanted was to curl up, sleep and eat; because I could not follow my body, I have become tired, tearful and really sad. Even though Blue-Eyed Boy's wonderful godmother was helping me with him and his friend, I still had to drag myself into the car and drive across town to sit and wait in a car for an hour when I should have been tucked up in bed with a hot water bottle and a tray of food.

So I'm caring for myself now; the children are finally asleep after more songs and stories; I cooked myself a good healthy dinner and have curled up on the sofa with some kind of mind-numbing 'cheery' TV program, and in a while I will go to bed with that hot water bottle and my book, but I can't shift this black mood.

The thing is, I've taken most of the antibiotics under the sun already, from basic Penicillins to hardcore drugs such as Ciprofloxacin for weeks on end. From September until April I would guess that I took between 15 and 20 different types of antibiotic; none of them did any good whatsoever. Some predated my getting ill in my bladder; when I was in hospital for my stomach/bowel I had a skin infection (contracted there because it is so dirty) which took 4 antibiotics to shift. After my bladder symptoms began my GP and I tried antibiotic after antibiotic in the vague hope that we would find the 'right' one. None of them worked. Of course there is always a chance that we didn't hit on the only one that could have helped, but nothing, absolutely nothing, was coming back on the cultures, not even the ones from inside of my bladder and urethra when I had my cystoscoscopy.

I don't know what exactly I was expecting from this book, but this wasn't it. Right now I can't read the rest of it. It is now just making me feel really sad. When I analyse why, I find that it is because something worked for her that didn't work for me. Now this is irrational and a bit ridiculous. There are some other chapters that might be really useful for me. Maybe I will come back to it. But right now, if I'm honest, I just feel jealous that she did begin to get better.

It has also it's just made me reflect what a long and hard fight this is; and I've started to wonder who else I will lose along the way? Yesterday one of my ex-best friends turned around and judged me more harshly than anyone has done for a long time. She said she didn't blame Mr Sleezeball for leaving me. She said I gave him such a hard time that she understood why he did.

How could someone who loved me say or think that? I think it was at that moment that I decided I never wanted to see her again if I could help it. That was just a step too far. It was not what happened at all. I did love him, in my way, and I put a lot into the relationship; he took and took and took and in the end, when things got tough, he disappeared. He was a total bastard, he was cruel; he treated me as if I was something stuck to the bottom of his shoe. And that's not moaning; that's just the truth.

Some people are just fair-weather friends. Very few people want to stick with you through thick and thin. And yes I'm not fucking perfect. I do dramatise things; I am really blunt and outspoken; I can get carried away by things and people and not consider consequences properly. But I am not what she accused me of being. I am not wallowing in this disease. I am not 'whingeing'. I would give anything in the world (except my children!), for it to disappear over night and to never have to ask anyone for help ever again.

It is not going to disappear overnight, though, is it. And what if it never disappears? Adapting is proving really tough; I'm only in my thirties, it just isn't fair, it isn't fair, it ISN'T FAIR. The past year has been like one long nightmare and I just want to wake up.

I remember the day I started bleeding from my backside last year, the second Wednesday in September. It was like walking into another dimension. The children were having a snack and watching TV and I kissed them goodbye as Mum and I went off to A&E. I didn't return for three weeks and when I did return, it was not me who returned.

Nevertheless I have clawed and scraped and clutched and grasped my way back to some kind of 'normal' family life despite the onset of Interstitial Cystitis another cruel Wednesday evening, mid-November, just as I was beginning to feel 'better' in myself (and yes, I remember the day; it was sudden sharp bladder pain, out of nowhere - I had no idea it would lead me here - I thought it would be healed with a 5 day antibiotic course), but my children miss my energy, my sparkliness, my joy. I miss it too. I want it back. I just want myself back.

I want my old self back. I want my health back, which I took for granted completely until it was gone. I want a chance at real happiness again and I do not know how to even hope for that whilst this disease continues as it is now.

My quality of life is this: wake up, take painkillers, fight my way through the day, put on a more or less brave face depending on how I feel and what the tasks ahead are to be, give my children as much attention as I can without total exhaustive collapse, count the hours until bedtime, eat, read, sleep. Wake up and do the same. Each day is a battle. I can't live the rest of my life like this.

The worst thing, perhaps, is that there is no prognosis. If I knew it was 2 months more, 4 years more, ten years, I could perhaps cope. But Interstitial Cystitis is like being sent to prison indefinitely. No knowing any drug or therapy will ever work. No knowing if I will ever get out - where the key is, if it will ever fit the prison door, if a key even exists at all.

the wonders of acupuncture

So i'm just back from my second acupuncture treatment.

I went feeling stressed, upset, angry about losing a close friend, worried about my daughter, off sick from school, whom I had to leave with my Very Welsh Mother, who is basically furious about life in general at the moment, so I was pretty sure that three hours with my ten year old wouldn't help much.

So I drove off, following detailed directions (discount for going to her house). It was about a half hour drive, and I didn't need to stop. Then I got lost, so by the time I did find her I was even more stressed, almost in tears and desperately needing the loo.

She is a calm, wise, beautiful person though; or so she seems to me after two meetings. Just her energy calmed me down straight away; plus immediate use of a clean toilet!



We sat down and talked about my physical and emotional symptoms and then she began the treatment. Two halves: one in my back/bottom for 15 minutes, one in my hands/arms and legs/feet. She is building up to the abdomen as I'm worried about having needles there.

Again I found it incredibly relaxing; the needles do hurt, sting, or occasionally hit a nerve as they go in, but then you feel nothing.

I found myself talking about how much anger I was holding in. how I am walking around angry, furious with my ex Mr Sleezeball for not cleaning his fucking canal boat and leading me to get so ill which then led to my immune system weakening and somehow the IC arriving. I blame him, all the time. She said the first step to emotional recovery was to simply acknowledge this fact: that I am nurturing my anger, feeding it, almost using it as a prop now - the whole 'it's not fair', 'why is this happening to me?' that we've all been through.

 It goes without saying that it's unfair; illness always is.

But as long as I cling onto my anger with my ex I continue hold onto a hot coal and burn myself. I said I found the thought of forgiving him absolutely unthinkable: that I just could not ever, ever do it.

She said go slowly. The first step is to take personal responsibility and try to separate the anger from him. He is gone now - thank god - and I never have to deal with him or his shit again. The residual feelings are mine and mine only, and I need to own them in order to have a chance of dealing with them.

Again she said she has seen so many bladder/cystitis patients (she's only had 2 with IC but many with bacterial problems) with anger as their primary emotion.

Afterwards I felt incredibly relaxed, relieved, and now I feel very noise sensitive. Kids are running around making a lot of noise and yet I don't want to shout at them! I just wish I could go to sleep! I feel less upset about the loss of my toxic friendship and even remembered some happy moments from years ago and could smile about them, which 24 hours later is quite amazing.

I already had a break from the constipation again, like last week. And slightly less bladder pain this afternoon.

The most miraculous thing was that for the whole hour I was in there I didn't need a wee. I realised this about half way through the treatment. Was almost scared to mention it in case I jinxed it, but when I stood up afterwards, the desperate urgency had eased.

So far I would definitely recommend it to anyone considering this as a viable alternative therapy.

goodbye, toxic friend.

So today I lost someone I once considered one of my closest friends.

I have known her for 7 years; so there will be grief, but at the moment all I can feel is anger.

It's true that this illness takes friendships away and makes those that remain stronger. This is the second friend I've lost in the past year who really once mattered to me.

Right now I have no regrets whatsoever. She gave me the choice to be a 'case study' for her shamanic healing (!!!) or to be taken out in the car by her for a day out so long as I behaved myself and wasn't needy and didn't ask for anything and didn't encroach on her boundaries.

I said I would rather stick pins in my eyes.

The point that finished us was whether you help your friends when they are in trouble. My answer is yes, of course you do. And it is fine to ask for help, when you need it. People are not obliged to help each other. But I always help my friends out if I can, and I do hope/expect they will do the same if I need it, as I have desperately needed it in the past year.

I have a close friend with Fybromyalgia and other serious health issues; we have not been able to help each other the past year. I miss her, as I think she misses me too. But our friendship hasn't died. We still love and respect each other. We have both expressed sympathy and sadness that we can't help each other in practical ways (i.e. having each other's children over) in the way that we used to, but long-term it hasn't affected our friendship, nor will it. She is too cool for that; way too cool, and non-judgemental.

This toxic friend, however, has, in no particular order accused me of the following: self-pity, being a drama queen (and she's the biggest drama queen I have EVER met!), resisting change, wallowing in my illness (god, as if), lying (I have no idea where that one came from), manipulating, driving my partners away, and being a 'spoilt brat'. All I did to spark this outburst was suggest that we start to renew contact and that perhaps she could come here, or we could meet in a park, as it hurts for me to drive the car. She kept on saying she was busy (see my post about 'what do you do when friends just don't understand').

This is somebody who I have stood by through thick and thin. I drove her bloody dog out to the dog hospital; I supported her when her ex was beating her up; I listened and listened and listened and listened and listened (sorry, but that was how it felt; she never stopped talking, scheming, plotting) whilst she was engineering how to steal someone else's husband (the woman was also a Scorpio, incidentally, and now she tells me 'I hate all Scorpios.' Ha! Trash their lives, slate their characters, kick them to the kerb and move on.... but watch out for the sting in our tails).

Good riddance to toxic relationships. I have no place in my life for someone who wants to gauge my eyes out at a time when I am in intense pain and need support and love. I cannot even, at the moment, wish her well. She thinks she is better than everyone else around her and yet wants to be a healer!!!

Thank you, Interstitial Cystitis, for ridding me of this bullshit and this horrible woman whose idea of helping me has been to continually criticise, patronise and insult me.

I wish her son well. He is lovely. My son was born close in age to him and loved him, so it is very sad for the children. I hope with a mother like that, he somehow manages to grow up undamaged.

my far-away and much-missed Soulmate

So it's high time I wrote about love.

This blog is about what is close to my heart and the intricacies of my everyday life; and mostly at the moment that is my children, my writing and my illness.

But there is someone else who dominates a lot of my thinking time : my far-away soulmate, love of my life who makes me so happy and yet so sad at the same time. Think of Bonny and Clyde, Scarlett O Hara and Rhett Butler, Romeo and Juliet.... well, not quite such a cliche, but heading that way.




We really love each other. That much is clear and simple. At times this year he has been the only, and I mean the only, person willing to listen to me sob and break down over my illness and say all kinds of unthinkable things that you would only otherwise say to the Samaritans. And he's walked to a cold call-box and stood there to listen to me crying and working through this awful condition in my head; he has held me from afar, even when he cannot hold me close.

So anyone who thinks he doesn't love me is wrong. If you didn't love someone, there is no way you'd do that. Full stop.

And as for me - well, since I met him over 5 years ago, I've had two other relationships, one minor, one major, neither of them worked out. I've always loved him since the day we got together, the second time we met (the first time we were both too drunk); I cannot help myself.

He is the other half of me. He does, actually, complete me. So when we are together, in our bubble, holding hands, I am blissfully happy, and I believe he is too. You can never crawl inside someone else's head or heart but I have a fairly good idea. He hardly ever leaves my side when we're together and he never gets bored with me or says he needs to just pop out or be somewhere else or leaves the room on some pretext. I am never 'too intense' or 'too much first thing in the morning' or 'can't we just be quiet now and listen to Radio 4' (Mr Sleezeball's favourite line in bed - lovely). But we never have enough time. However much time we manage to snatch - a day, three days, a week, even a bit longer... it is never enough. It's like grains of sand slipping through a sand timer far too quickly... and then they're gone.


So my far-away, co-dependent Soulmate. We're working on the co-dependency, but it's tough. Our circumstances have been such that we have not (yet) been able to build a life together and yet I cannot stand it when he is with or near someone else. I do need him; I hate it when I can't get hold of him; and it's the same for him, I think.

He has had two relationships also during the past five years, apart from with me; one with a young girl which still gives me the shivers (it was legal, but only just, and he lied to me about it saying they were just friends; he used to do crazy things, like calling me from her phone at midnight on New Year's Eve, I wonder how she felt about that) and one 'casual' one which was still going on when we got back in touch and started to reconnect earlier this year.

This last one took a while to end and there was a bit of an overlap - though luckily not with the sex - we never slept together until that other 'relationship' was finally over thank God. He lied to me about it and that did hurt; the betrayal. I turned up with a pink rose for him and we had a beautiful cuddle and then he got a text from another girl and it ruined the moment. I felt like Scarlett O Hara then. I could have slapped him, but instead I slapped her, from afar, by text message.

Our major problems do not really include fidelity, though, as once we're together we completely fill each other up. There is nobody else for me now; and I do trust there is nobody else for him.

Our major problems are, in this order I think: lies, fear, addiction and prejudice. His addiction; his lies; my fear; my family and friends' prejudice. Major problems, all four of them. And they all feed into each other. The more he lies, the more frightened I become that I can never trust him. If his battle with his addiction hits a 'blip', my fear increases more and more and I'm sure the prejudice that he can never win his battle would increase too if my family/friends were to find out.

Conversely, my fear sometimes blocks him from fighting the good fight; I expect he sometimes thinks, what's the point as I'm never going to be good enough anyway. And even if I do everything right, her family will still hate me.

And to an extent, he is right - they would. But if he were to overcome his demons, which I know that he can, I would stand by his side and we would face it all together and I know we would be ok. So I do feel at the moment that the ball is in his court: not to lie to me, to be more reliable, to fight those things and temptations that hold him back and keep him trapped in a cycle of destructive behaviour and disintegration. He has got some great Christian people around him at the moment helping him - he's lucky! I believe in Jesus if Jesus believes in my true love :)



I am holding on and keeping on hoping because I just cannot imagine a life without him. I've lived it; we've had periods of no contact; and it's grey and miserable. I wonder about him constantly. When I got ill a year ago, I began to think about him all the time again. By this point we had been out of touch for just under a year. It took me months to get back in touch. It took me months to even begin to contemplate letting him back into my life.

When I finally posted a letter, in February, he was on the phone within ten minutes, and we were both crying with relief. It was amazing to hear his voice again and to know he was out there in the world. I didn't even know what situation he was in; I thought he could be with the younger girl, maybe even having a baby with her or something. But I just didn't care. At my lowest point; I needed him, and he was there, straight away, no questions asked. On the day I was diagnosed with IC, he was at the railway station with open arms. It was the first time we had laid eyes on each other for eighteen months.

So it's like that. We could be apart for twenty years and we would still click back in place, like pieces of a puzzle. We make a great puzzle. There are no gaps, and you don't have to wonder whether it is really such a great fit or not, it just IS.

But life is not a puzzle. Life is a circular entanglement and not just of love, but commitments, family, friends, ideas, dreams, wishes, fears and dramas. Love is a lot; but it is not everything, and sometimes, heartbreakingly, it is simply not enough.

The question is: can we live in our beautiful bubble in the real world? One day, I really, really hope so. We deserve it, after this long. I want to fast forward 5 years, be magically better, and be living with him and my son down near the sea while my daughter is finishing off her education at boarding school. We are happy; I am writing lots, he is working in a cafe or on a building site or wherever the hell he wants. Perhaps we have a market stall. We are really, really content and happy and healthy and fine.

I have this dream and I'm finding it hard to let go of it. Sometimes it is all that gets me through the day. It is healthy and unhealthy; beautiful and painful; positive and negative.... Right now, I'm waiting to see which way it will go. I know the way that will break my heart and I'm praying to whatever I believe in that he will find the strength to make the changes he needs to make in order for our dream to become a reality.