IC awareness day 30: raising awareness

What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers.  What methods of awareness can you use to show the public this is real?
In this blog, I explore many of the issues surrounding IC in the context of my own life as a single mum of 2 in the U.K. Its readership is growing. I am receiving positive feedback from IC sufferers who are so thankful I am putting into words the things they feel. This is real way of raising awareness of the realities of living with this disease. On the back of this, it's possible I'll have an article in the national press over here fairly soon.

I have also started to talk to people more about my condition. If people ask how I am, sometimes I don't just say 'getting there' or 'not too bad', but I stop and tell them a bit. Sometimes they don't want to know, which is fine. But sometimes - more often than I would have predicted - they do. People listen, and can't believe it - 'you mean, you have cystitis all the time? No way! That can't be possible'. And then they listen some more, and take it in, and go away and process it. For every one person who does this, awareness spreads.

I have connected with an IC sufferer not too far from where I live and am hoping to help set up a local monthly support group in addition to the online support I've found at IC-Network and the COB. I might ask at the hospital if i can put up a card asking who is suffering with similar symptoms. This card in itself would be read by hundreds of people coming in and out for appointments.
     
So I plan to do what I can, within the sphere I'm living and with the low energy level I have. If we all do a little, a lot will get done in terms of showing the public that Interstitial Cystitis is really affecting tens of thousands of people worldwide - if not more.

Much, much more money needs to go into research in my opinion. It's not enough for doctors to throw up their hands and say 'we don't know'. It just is not good enough. It's not enough for other people to think we are exaggerating or it is in our heads or it simply can't be possible. It is possible. It's happening to us; we're living with it.

In terms of medication, we need to know what aside from Elmiron (which as yet I have not even been allowed to take!) and nerve blockers/antihistamines (which do not work for me) might substantially help us. I have realised that I, for one, cannot spent the next decades of my life on opiate painkillers. I'm only 35. I'm not standing for it. More research into alternative therapies and supplements could reap huge benefits for many of us; the small studies into Aloe Vera and Cystoprotek are so promising and such a ray of hope... but the big drug companies are not funding them so they remain too small to be definitive. They need repeating on a much larger scale. For this, we need public awareness and sponsorship. We need this disease to be common knowledge, like arthritis, fybromyalgia, ME or other chronic pain conditions.

So we cannot stop pushing and fighting for our brighter future, however dark things seem when the pain is unbearable and you're on the toilet every fifteen minutes and so exhausted from it all you feel like giving up. Even if there is no 'cure', there are no doubt a number of remedies that as yet remain unexplored and thus unused. And in the end, perhaps, a 'cure' will be found, and some of that will be thanks to each of us fighting this good fight. We are not fighting just for ourselves, but for each other.

with or without you

I got really upset yesterday at the thought that my dear old Grandpa, whom I am very close to and have cared for a great deal in the 5 years since my Granny (and best friend) died, might eventually have to move to a home, and not in the city I live in. That I might not be able to see him whenever I/he want/s. That we might be separated. I burst into tears. And then I thought - he's 93. It's not as if he is going to be here in ten years time anyway. Or even five. Who knows?

Suddenly that thought was so untenable to me; so utterly dreadful. I feel as if I have lost enough people who I really care about; I cannot lose another. The people who are close to me are so precious to me I just want to superglue them to the spot, to 'keep' them, to know for sure that they are not going anywhere.

And yet that is not how life works; not my life, and not anybody's life. Everything is in a state of flux and change is the law of the universe. We all grow old; we all go through phases and metamorphose into different people, though we remain the same in essence. We outgrow each other. We 'dump' each other. We move away. We die.

The man I love is far away from me; he is on the other side of the country. My family hate him because of the way he acted years ago, because he lied, because he stole, because he hurt me. Also he is someone so out of their sphere that they cannot understand what makes him tick and the very idea of him being my soulmate hurts or would hurt them (some of them know; some can't stand to know). The fact that he has learnt and grown and changed doesn't come into it for them, though for me it counts for a lot. We cannot be together for now and yet there he is, solid, supporting me, from afar.

Some people say it is easy to do that, but I disagree. It's not easy to be there for someone, up close or far away. It is really difficult to listen; it's not easy to be bothered. How often do you really take the time to hear somebody else? It's much easier to forget, to say 'I'll call you back'; to postpone and prioritise something or someone else. But I never get that from him. And I can only conclude it's because of genuine old-fashioned love. I do the same for him and however things turn out, will probably do so all my life. Who knows what the future holds for us? I cannot hold onto him; it's like sinking in quicksand or holding a ladder up to the stars. I can only let it be what it is.

As with all of my relationships: in the end, we are born alone and we die alone. And with or without any of you, my life will play out, and will go through its phases, and one day I will stop breathing.

It's good to think about these things once in a while. Everything can seem so permanent, and yet nothing is. Nothing lasts. Except love, which does; though sometimes that just causes more pain.

But love is what saves us. It is, in my view, the only force in this universe stronger than death. Love is what pulls us through when we do not want to carry on; love is what gets us out of bed in the morning and encourages us to put one foot in front of another. The immediate love for and from my children keeps me going through the days. Otherwise I would probably have given up the daily and hourly fight by now.

So love - or Love, for it merits a capital letter, being as important as God, whatever you take that to mean - is permanent, but we cannot hold onto it. It's like trapping a butterfly in a glass box to look at its beauty: that's the best way to kill it.

how did my Interstitial Cystitis begin?..day 29

How did your IC begin? Did it come on suddenly or gradually? Do you know what caused it?

My IC came suddenly one November evening last year. Sudden pain one evening when going to the loo before bed. Then increasing symptoms over a few days, but it was a couple of weeks before the GP would take it seriously and even start me on any (useless) antibiotics.

Up until then my bladder had been completely normal, for years. A decade previously I'd had a small polyp removed which had been causing bacterial infections, and eventually a kidney infection; but for years and years I had only suffered the occasional UTI, usually related to sex and easily treated with a course of antibiotics.

So I was not particularly worried at first; more frustrated. Not another health issue, I thought. For two previous months I had been severely ill with stomach and bowel problems, a combination of severe gastritis (inflammation, interestingly, of the lining of the stomach) and severe cryptosporidium (a nasty parasite caught from the nasty canal water of my nasty ex partner's nasty boat ). I was dangerously underweight. I assumed this UTI would just go away and was obviously due to some bacteria from recent diareahha.

And maybe that's what had happened, at first. I'd just had the second of two full-on CT scans as I'd lost so much weight people were scared I had cancer as I had a 'shadow' round the stomach area which turned out to be 'nothing' after all; and the second CT scan had involved drinking a large amount of dye fluid which had given me a bad upset stomach. Sure enough, ecoli did come back on the first test, though not the dipstick only the culture; a couple more were indeterminate -mixed culture. Then they were all clear, and have remained clear. The dipstick tests were always clear, which I find odd bearing in mind the state of my bladder.

And so the nightmare began. For weeks, months, I was convinced it was only a case of finding the 'right' antibiotic. Then I was convinced it was ureaplasma, mycoplasma, chlamydia... it was none of these things. No bacteria. I had to come to terms, with great difficulty, after the cystoscopy and biopsy, with the (semi?) permanent nature of this disease. It's been almost a year now. What a journey. I would not wish this on my worst enemy. It's easily the most difficult thing I've lived through; and I've lived through a lot. And yet it is teaching me so much, in such a stark way, about what and who is/isn't important in my life now.

Did I get IC from bacteria? Perhaps initially. Did I get IC from being run down? Yes, my immune system was fucked. Did I get IC because I was furious with my ex? Who knows. Did I get IC because of a generalised inflammation of my internal organs? This is what I most believe.

So now I'm really going for the anti-inflamatory approach; in all areas of my life. A lovely lady on the IC network pointed out to me the difference betweeen anger and bitterness. I am not bitter; I refuse to be. IC will not break my spirit; I will not let it. I will fight for my moments of joy and for the life I've created; but my God, do we have to fight hard.

lying here thinking...

... about the people in my life who have stuck by me, and the people who have returned, and the people who have disappeared, slowly or suddenly, and the people who have run fast in the other direction from me.

I never could have predicted who would do what.

I don't feel sad for the people I have lost, really; though I will miss them, I expect, in the fullness of time. But there's no point in sticking around nominally and I don't take betrayal lightly. Either you want to be with me, or not. I'm not perfect - who the hell is - and if somebody spends their time criticising you and pointing out your faults when you are ill, then really they're not worth knowing. In fact, they're a toxic bitch and you're much, much better off without them. So goodbye, Toxic Friend. And my friendships which have lapsed... well, come back if you want, but don't expect it to be quite the same. I've learnt that fair weather friends aren't really friends at all.

If somebody is in a relationship with you for a year when the going is good, then leaves you when you've just got out of hospital and are seriously ill, you can safely conclude they are a. a total wanker, and b. not somebody who loved or respected you much in the first place. Mr Sleezeball, I firmly add you to my list of people I most regret sleeping with. In fact, you're at the top of the list.

My few close friends who have been with me through thick and thin this year I will love forever and will never forget their kindness. And you know who you are. Some of them I've seen regularly - as they're local; others are far away (and yes, London is far!) but I don't begrudge them that if they've kept in touch and I've known they still care. One amazing friend sent me letters and postcards through the winter which really kept me going. Some are ill themselves or have had many other things going on and so long as I know we're still connected, it's ok.

One of my loveliest friends emigrated to Australia 2 years ago and has since had a baby and got herself a new husband (not in that order, but you know what I mean). It only took an hour sitting on a bench with her when she visited for a day to realise that I hadn't lost her at all, even though I never see her and months and months go by without us talking. Roll on the days when I am well enough to visit Byron Bay! Likewise another very close friend is currently living in the States. I need to email her as I hope to visit her next year with Pre Pubescent Beauty, who is her goddaughter. I miss her a lot, but I know as soon as I see her we will just pick up where we left off; we always do.

And last but not least, my Heathcliff, my soulmate, whom I wish I could be with but at least know is out there and loves me. He has been like a rock for me since we got back in touch, particularly at midnight when I'm sobbing about how much pain I'm in and there is nobody who wants or cares to listen. He is my past; he is here, back, incredibly, in my present; I hope if he sorts out his shit he might stick around for my future too.

alone at last... and thank you

So it's Saturday morning, and for the first time in months and months my family are going to have the children all day. I am in bed, with a copy of the Guardian, my laptop, my P.D. James book, and a cup of Roibush tea. I can relax. I can have a long, hot bath. I can call my errant soulmate and catch up with his news and hear his voice. I can watch a film. I can go back to sleep.

They are going to their swimming lessons with my Mum, for which I am very grateful, and then my beautiful little sister and her boyfriend are taking them out this afternoon - they live in London so we don't see them as much as we'd like, the children love their auntie and her fella (who taught my daughter how to 'cook' a crisp packet - don't ask me why but this won her over) and are conseqently very excited about today.

The past couple of hours were really hard work, getting them dressed and doing breakfast and getting all their gear ready while containing excitement levels and fractious behaviour. I sometimes think they're not kids at all, but baby tigers. Shouting, scratching, hugging, jumping up and down... But as my dear Granny used to say, 'we don't want our children to be Potatoes, do we?'. Definitely not. And life seemed more 'normal' this morning, if I can even remember what that was for us before my IC. It does, when I don't feel too bad (that'll be the Tramadol working, and possibly the Acupuncture), and when I don't feel so alone (that'll be the family helping me out today).

I have spent the past week on here battling with some malware/virus which is now clear. It has driven me mad and at times I've thought about giving up on the whole thing. It was due to downloading a random picture; so no more pictures here for now. And I'm not giving up - this is my space - this is my Room of my Own.

I've had some really lovely comments both on the content of my blog and the style and fabric of my writing. As I was saying to one of my best friends, who is an editor so certainly knows bad writing from good, I really didn't know if I could write anymore when I started this thing. I have always identified as a writer, and have always written - essays, articles, stories, poems. But since the birth of Blue Eyed Boy 6 years ago, it's been hard to find the time or energy.

I started this blog in desperation as I just needed to get some of my feelings out. The need was eating me up; and one day someone suggested a blog. I've never liked the idea before, but somehow this was the right time.

It's better than a diary, as it reaches others and helps me feel less alone. As it is anonymous, and not 'for' any formal purpose except my own catharsis and helping others with IC or who are struggling as single mums, I feel no pressure to write in any particular style and consequently no block to the words flowing. People who know me say it sounds like me talking. So there we have it.

Thank you, everyone who is reading consistently and re-posting on your social media. Would love to get my readership up to reach more people out there who say that I maange to verbalise the things they are feeling about chronic illness/ single parenthood / general angst and pain of life. Anything you can do to spread the word is much appreciated. This blog is my heart and soul right now. It's a lifeline. It means a lot to me, as I realised when I thought I was losing it to some stupid computer fuck up. I do not want it to disappear, but to grow.

Just like I do not want to fade away into this world of illness and despair, but want to grow through it and emerge a stronger, wiser woman. Sometimes that feels impossible. Other times, like today, I have glimpses of that happening.

Treatments and medicines:IC awareness day28

So I had many antibiotics before diagnosis. I think the initial ones cleared an initial ecoli UTI infection; the rest merely caused immune system to weaken further and generally fucked up my system. Then I had a rigid cystoscopy with hydrodistension. This did nothing to help my symptoms - they worsened while I was healing from it, then were the same as before. But it was diagnostic as mast cells and chronic inflammation found and so IC diagnosed definitively instead of 'urethral syndrome' or 'it's in your head' etc....

Since then I have tried:
Conventional medicine: 1. Nortriptyline (which worked a bit initially, but then stopped affecting my bladder just making me sluggish and gain weight and everything dried out... so tried doubling it but the side effects just doubled, so stopped... 2. Hydroxyzine - I thought this had an effect at the beginning but then again stopped working at all and just made me so sleepy and also caused retention. 3. PAINKILLERS - without which I couldn't function - I've tried. I'm currently on Tramadol and Dihydrocodeine, which work out ok if I take Tramadol in the day and DH in the evening. Sometimes I use co-codamol when pain is less, or supplement the strong ones with paracetemol. My pain is a 5 out of 10 to an 8 out of 10 ON these. Without them, I can barely move. I still have days of intense pain even on this medication. I have also tried Fentanyl and Buphrenorphine patches. Both avoided the morning agony but both had side effects and the Fentanyl kept slipping off - but I was in much less pain- may go back on one of these soon. 4. Diazepam - for my Pelvic Floor Dysfunction - my muscles are so tight that it's hard to relax to urinate, so the diazepam helps with this. It also helps me feel less panicky and desperate. 5. Have put in special application for Elmiron through my urology consultant - STILL waiting to hear.

Alternative medicine: Reflexology / aromatherapy - lovely , but ain't gonna cure my IC. Currently having acupuncture, the jury is out on this one. I have had a few more good days lately so you never know, it may be doing something. Need 6 to 8 sessions before can know.

Diet: no caffeine (at all), no alcohol (at all), and much less sugar or gluten. Mostly following the IC diet though I do what works for me. Absolutely no citrus or spice. Artificial sweeteners make me in bad pain. Sparkling water is fine for me tho, as is vanilla ice cream. People do all kinds of things with diet - I don't think we should judge or be prescriptive - but there is no doubt coffee, wine and tomatoes are doing you no favours.

Lifestyle: I'm a busy single mum BUT i spent more time resting now. I mean, lying still and either reading, or thinking, or staring into space. I have lots of hot baths. I use heat patches and cold packs. I adapt. I expect less of others and myself. I try to make this as easy on the kids as possible, which isn't easy at all. I TRY to think positive, which some days is a lot easier than others, but if anyone tries to tell me I can 'affirm' my way to health, I think I will throw Louise Hay's book at them. My acupuncturist says there is a definitive link between IC and anger. This is interesting. I certainly am angry with my ex, as he was responsible for making me ill in the first place which then led to my IC. Dropping this anger is v hard. She says I won't get better til I do. This then makes me angry with her lol :) xxx

Supplements: Probiotics. Have tried some aloe vera, tho it wasn't pure enough, so want to order the Desert Harvest one but currently broke. Would be interested in Cystoprotek as haven't yet tried. Eat more Omega 3 and 6 and I take vitamins sometimes.

Do whatever works for you. Be your own best friend and your own advocate. Nobody will fight this battle for you.

IC awareness day 25:what IC has not changed about me

What are some things about you that the IC hasn't changed? We often talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn't taken away?

I'm still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. If I care, I really care. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don't know how to be false or silly or bitchy for the sake of it. I don't beat about the bush and I still can't stand pretentious people or game players. 

I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn't scream from the rooftops or dance in the streets.

I'm still a good mum - although restricted physically in some ways, in others the IC has made me even stronger - as I'm more conscious of how lucky I am to be blessed with my two children and how big a job I'm doing on my own. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured... That much has not changed. The three of us are a tight family - even tighter than a year ago, I would say. I still love going to the park with them, even if i'm sitting on a bench for most of it, cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. IC cannot and will not take the family I've created away from me.

I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I still love the autumn leaves and the crisp night sky in the countryside when you can see thousands of ancient stars. 

I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it's serious enough to warrant that.

I still follow my heart. Whatever knocks and blows I receive I retain a kind of internal innocence, which is maybe weaker now but not dead: I still believe in love, and fairies, and mermaids.

I may not believe in wishes coming true so much anymore but you never know, that could always change if mine does.

back from acupuncture and feel worse not better

So today's experience of acupuncture was not so good, and I've returned home feeling more ill than I did this morning. Somehow have to get through hours and hours of child-related activity before can sleep; have to go to look around a school for PPB; do not know how the hell I am going to manage to do these things. I feel in burning pain, hot, shivery, emotionally drained...

It was partly the travel (drove 30 mins there and 30 mins back to her house, for a discount, which I can't keep doing), partly that my Very Welsh Mother, bless her heart, drove me, which was nice of her but there is always this tension bubbling between us whatever we're doing... and partly the session itself. She seemed to use a million needles and then started reading me a book along the lines of 'You can Heal your Life' - all about affirmations and herbs that are meant to help me - and generally about giving up the 'poor me' attitude in favour of 'taking responsibility'.

It all made me stiffen, flinch, and got me on the defensive; I felt like she was judging me even if she wasn't; and all in all now I feel worse than a few hours ago.......... disappointing hey............. i just wish there was a CURE for this BLOODY DISEASE because I am so SICK of it and of people's opinions about it and of people telling me I can heal my own bloody life, like it's some kind of choice I've made to have a red, raw, bleeding bladder. I do not remember making that choice. And yes I'm angry. Wouldn't you be? So the anger is making me ill..... so it's a vicious circle...... so now what??????????

IC awareness day 23: frequency

This is shocking to people who do not have bladder problems. On a bad day, it is once every ten or fifteen minutes, most hours. My maths is bad, but over 12 hours this works out as at least 48. Plus a good few times in the night. AT LEAST 50 times in the 24 hour day. On a good day, it can be once an hour or occasionally even two hours. So I suppose the very best, frequency wise, with a good night as well, is 12 - 15 times in the 24 hour day. This is rare though.
Yesterday I could get away with once in a 1 and a half hour train journey, if I sat still with my legs crossed....

I suppose the norm is somewhere in the middle. 30 times a day maybe?
I've never actually counted, over 24 hours; maybe I should.
Often I have to go in one ad break, then the next 15 minutes later, while watching TV; that's quite usual.
Some poor soul the other day said to me in passing 'ooooh I really needed a wee half an hour ago; now the feeling's just disappeared; do you ever get that?'
I just smiled and said nothing. Really, there was nothing to say.

IC awareness day 22-most supportive friend

Dear C

Don't want to name you in public as I know you'd hate that; your support has always been so quiet, unassuming and steady, and I know you would hate me to shout from the rooftops about it, yet I would not have got through the last year without it. 

We've been friends for ages, but it developed slowly, and if someone had told me a few years ago that when I developed a chronic illness you'd be the person who stuck by me the closest and was the most reliable, supportive, sympathetic and understanding, I'd have been surprised. Not because I didn't know that you were all of these things, because I did; but just - well - life surprises us sometimes. 

I thought there were other, perhaps closer or more intensely close friends, who would have rallied around more dramatically; yet some of these quickly slipped away, and some just went into hiding until things got better (they haven't, but you don't ever seem to mind if I spent an hour moaning about my pain, or if I never want to talk about it at all and just want to pretend it isn't happening). Other friends have been there on and off, and family, but nobody that I have felt totally relaxed with all the time.

So. Thank you for being the most supportive person in my life over the past year.

You have helped me in numerous ways: from regular visits to me in hospital last autumn, to listening to me rant and ramble, to seeing me through manic days on the wrong painkiller combo and silent car trips when I was so depressed at the break up of my relationship, from staying the night with me after my cystoscopy, leaving your small children to do so, to taking day trips out with the children (even if I start arguing with people because so stressed out!), to supportive texts most days and just knowing you are always there if I need you.... you've had my children round to play numerous times when I just felt too weak to get through the day.... emotional support, moral support, and practical support, you've done them all. And you know who you are and you are amazing and don't ever, ever think that I don't appreciate it or that I don't value you really highly. 

You've been a total rock for me this year; my little sis. I am here for you too, don't you forget it. Thank you, truly.

xxx

welcome to the world little one

So blog-wise, for those who have been having difficulties, I just installed Google Chrome and I got the Ad Blocker extension... it seems a bit better.... I would hate to have to give this up or transfer it all elsewhere which would take an age now!! This blog really is safe so if you can't access it one way, try another; I've run so much antivirus, antispyware, antimalware etc I know it is fine... wish I could do the same on my IC - just take a morning and blitz it!

So here I am, Tuesday morning. Back from London, a day trip yesterday, to see my beautiful nephew. I would post a picture but I want this blog to stay anonymous plus the events of the past few days on here have shown me that anything I upload to here may bring problems with it, so just text for now, no pics.

It was so lovely to see my nephew, and my little brother all grown up and being Daddy. Cheered me up just getting out of here for the day and although the travelling was tiring, it was worth it. The silence in the quiet carriage on the train was worth its weight in ten pound notes, barring one man who got on, sat down in the seat behind me and boomed 'is this the quiet carriage? where you can't use your mobile?' like something out of a comedy sketch. I just moved seats. Usually I would have engaged in discussion with him ('yes, and piss off', or something a bit more polite) but I had my book to read and I just couldn't be bothered to waste my energy.

It's getting more and more like that these days - when something really bugs me, sometimes I am more the old me than I ever used to be and I really do shout about it, but other times I just haven't got the energy. And actually, that's fine. Yesterday was not about engaging in arguments with random strangers. It was about seeing my brother, sister-in-law, and their beautiful new baby boy. And realising i am now an auntie, officially, and the passing of time etc etc. That's what it was about - and except for one scary moment, where I left my train ticket and oyster card in a Starbucks I'd popped into just to use the toilet, and had to run back in heels to the same toilet and find with relief and surprise that it was still there (in London, a small miracle), the day was peaceful and my symptoms were numbed with a double dose of painkillers. 

I am paying for it today - exhausted, can hardly walk down the stairs, wondering how on earth to get up and going.

But it was worth it a hundred times over. Welcome to the world my new little nephew; I hope your life is full of blessings and bliss and sunshine.

last saturday's post plus note to readers

ok so here is my post again from last Saturday - someone recommended I delete and repost it.

adverts are now popping up on my blog and I think if this shit goes on I will just give up!! I can't see how to fix it. i've spent hours and hours and hours on it and I don't need the aggro; this was meant to be something to help me and others, not stress me out further.

anyway, here's saturday's post again:

My day today was like a bad episode of Eastenders with a bit of Casualty thrown in (this won't mean much to you if you're not in England, perhaps - one is a depressing soap opera, the other a hospital drama set in the emergency room).

I began the day again unable to move in pain and heard the children happily playing outside my door. Asking my Pre Pubescent Beauty to please take my Blue Eyed Boy downstairs and give him breakfast, I received a cheery reply and so I turned over, contemplating how I was going to get past their game, to the bathroom, to get some water to take my painkillers - this time they were in my room, but no water. I must get organised, or get back on a 24 hour patch to avoid this morning paralysis. I must take the painkillers, I was thinking, give it half an hour then try to get going. My daughter was due at my parents to do homework and various things; my son and I were meant to be going shoe shopping.

Anyway, the drama kicked off shortly after this. They disagreed about some small aspect of the game and PPB spiralled into a screaming fit which lasted half an hour perhaps; on the richter scale it was an 8 or 9, involving swearing, threats of violence, she even looked at one point as if she was going to hurtle down the stairs. I tried to keep calm and keep everyone else calm whilst somehow trying to take my pills; I could barely move for the pain and here I was dealing with a screaming ten year old. Twice more she calmed down and then kicked off again.

Turned out she was upset with Baby Daddy Number 1, a journalist cum musician cum piss artist who more or less dances to his own tune and has periods of being more or less involved in her upbringing - this being a 'fallow' period. He had called last night but given no indication when he might call again or see her. So she was taking out her rage on her nearest and dearest: us.

Eventually, many texts later, my Very Welsh Mother turned up, full of barely suppressed rage herself. Together we tried to convince my daughter to put her boots on and leave the house; she wanted discussion, analysis, consolation, cuddles, more and more attention; I had run out of steam and was no longer able to stand up. My poor 6 year old had opened his Lego box and was doing his best to block out the world. She then smashed his lego model and stormed out of the front door. 'Go after her!' I said to my mum, as I was still in my old tracksuit (having not had a minute - literally - to even think about a shower or getting dressed). 'FUCK OFF!!!' she yelled in my face. Then she stormed out into the road. I immediately ordered my daughter back inside the house and my mother to leave. I was shaking with shock. Never in my life has she spoken to me like this; and I hadn't done anything myself to provoke her.

I think we are all of us losing the plot. I'm really worried about my whole family, to be honest. There is a lot of illness around and a hell of a lot of stress. I think everyone is kind of imploding.

I collapsed on the sofa with more painkillers and curled up in a ball. PPB apologised and said she was shocked into silence. Quickly, she did the things on her list: literacy homework, music practise, tidying her bedroom, helping me prepare lunch... My father arrived later and took her to their house for a while and I was able, at about 3pm, to get into town with BEB, where the stress of shoe shopping actually seemed relaxing!

Bizarrely, once out of the house, I didn't need the toilet once, for 2 hours. Admittedly I was careful not to drink anything at all as I know how much BEB hates our embarrassing public toilet searches, but still. This morning it was every ten minutes. This made me think about the link between IC and stress. He commented on it too - 'you haven't needed the toilet once this afternoon, Mummy!' - which did seem to be the case on our two hour outing, tho the pain started again in the car on the way home.

So I've said - any more behaviour of this kind, no kitten. If it's pre-kitten, she won't be coming. If it's post-kitten, she'll be going to the cats and dogs home.

Harsh, but fair, I think, under the circumstances.

They were sweet tonight and went to bed after stories and cuddles by 7.30, my daughter calmly accepting her 'consequence' of no Saturday night TV.

I should've been miserable tonight as had to cancel a planned concert with one of my best friends (hope she got there safe!) because I just wasn't well enough. But my main feeling was relief. THANK GOD THE HOUSE IS QUIET! That kind of thing. And now a chat with my errant soulmate, and sleep; the best part of the day.

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.