Life, 2 hours sleep and a road trip to the new hospital

Let's get this straight. Life is not like a box of chocolates. It is certainly not a bed of roses. It is not even an uphill struggle. It's a bloody joke. A sick joke.

Sometimes I think instead of a god or some 'higher power' there is some messed up joker up there in a batman suit watching us all beetle around our little anthills living out our daily dramas which seem so desperately important but actually mean nothing, and he is laughing and laughing at our misfortune. We dash around like headless chickens and then we die of old age, illness, car crashes, plane crashes, Ebola (massive respect to Bob Geldof, my hero, by the way) or whatever else happens to waddle along to finish us off, and it was all for nothing. 'A tale, told by an idiot, full of sound and fury, signifying.... nothing.'

Apologies to those of you who say I am funny. I would love to make you laugh but I am actually quite depressing at times. I think these thoughts are born of having 2 hours sleep between 4.30 and 6.30 rather than any deeper psychological disturbance, at least I hope so....

I am in a lot of bladder pain at the moment and keep having these spasms where literally I cannot pee even though I really need to, which is scary, as apparently the mast cells have invaded my detrusor muscle (sorry, technical talk; the muscle that you hold in your pee with).... There is some therapy that can help which my consultant is applying for. In the meantime, it is Diazepam all the way. Plus my usual cocktail of painkillers. Although am persisting with the Elmiron . Despite the fact that it makes me feel sick and my hair fall out. The hair loss is manageable and the nausea I am so used to I have forgotten life without it..... I am happy to lose all my hair if my bladder recovers. I took this decision so it doesn't bother me and in fact nobody else but me is noticing as it is not very obvious.

Am now into month 4 of Elmiron and have heard of people who had to take it for over 6 months before anything happened so I hold out hope. One woman told me after 8 months of nothing, she was about to give up when it just magically started to work and she is now almost pain free . As it works in a third of IC sufferers, it is worth persisting, I think. Actually one thing is changing, I am getting up at night less to go to the bathroom. But that could just be because I am awake more; or because I am taking tranquilisers due to the bladder spasm.. But I think it may be different. The night before last I slept for 6 hours straight. This has happened a few times lately, without a sleeping pill. for me is something of a miracle. We shall see. My new consultant said to watch and wait and reassess in February when I may start more invasive treatment.

So I got two hours sleep because of crazy bonkers emotional dramas going on here which I just do not need. Too private to write about even on here, as I just don't know who may read it. Suffice to say that some people are emotional vampires who drain your energy and suck your time and make you feel like you are losing the plot, and they do this regardless of how you are feeling, and I just want ALL of these people GONE. The trouble is, their roots are very deep in my life and it is hard to weed them out. I love several of them. But the dramas are keeping me stuck and keeping me ill. I was having a panic attack at 3am. This is no good for me or the kids. Thank you to those friends who were there for me last night. Sorry if I worried you. I would say it sounded worse than it was but that would be a lie. I honestly don't know what I would have done with you. Caveliere, grazie mille.

I am driving later to the new CLEAN hospital (I just can't get over how clean it is after our local hospital, which resembles the less pleasant hospitals I have encountered in India; the room where they do the catheter treatments is like a private hospital with pictures of soothing moutainsides and waterfalls - waterfalls??! who designs these places??! - and floors which sparkle as if they are cleaned every hour) for a focus group with other people who suffer from chronic bladder disease.

I really hope it is worthwhile as it has been a huge hassle to sort out who is looking after the children. As usual like juggling with sixteen balls and dropping several all the time. As am not on speaking terms with mum still it is even harder. But thank the lord for good friends and neighbours and fellow school mums plus a decent childminder three times a week after school. Who drives! Pre Pubescent Beauty has her first hockey match today (but mummy WHY can't you come? WHY? You are not a mother!!!), Blue Eyed Boy gets out of school at the very time that I have to get on the road and then has a piano lesson to go to in a different part of town from the hockey match.... But I have organised it all and at 3.15 come what may I am leaving for the hour and a bit drive, the two hour group, and then the return journey.

I am nervous about the journey, as have not done it alone so far; always with dad or a friend, and we have always got lost; and am nervous about the group as have met so many people online with IC but not one person in real life in 27 months of illness. What if they don't feel the same way as me? What if they are all really dull and quiet? What if they think I am really weird and loud? What if they are all much much better at coping with it and think I moan too much? Worse still, what if there are only three of us there plus five psychologists and six urology nurses and it is two long hours of custard-cream-eating awkwardness when I would far rather be at home watching Eastenders with a hot water bottle and my cat?

But we have to try. I have to try. I really am. Trying, that is. Best foot forward. Can't you tell?

xxx

Top ten techniques to cope with chronic pain

So I am still here, boys and girls, just posting less frequently.This won't be a rant, I promise!!

I have been getting on with things after a period of a couple of weeks where I could hardly leave my house/bed, I have been more active in the past couple of weeks and some good things have been happening (thank god) as well as the usual shit. So, I am grateful for that.

Some wonderful new people have come into my life online (nb still not doing facebook though my account has mysteriously opened itself again so i may go back to it and delete everyone I don't want to talk to.... and my new instagram name is rainbow_girl_x) .... This has cheered me up a great deal. Real true lasting connections; makes me hate the internet less! I have met one truly amazing person who I will write about more another time soon. And my remaining lovely friends and family who have stuck by me through thick and thin continue to be amazing and constantly surprise me with their kindness and support. You know who you are.

I want to write a post about my hospital visit last week and my amazing new consultant and CLEAN clinic and examination room... and even more amazing friend who came with me and drove me home when I was too exhausted; and a post about the new sparkling folk in my life; and a post about love and letting go and how difficult that whole side of things is..... and a post about my kids and how all their stuff is going....Also I have started working one morning a week at my son's school helping in the classroom plus am writing more and hoping for some articles coming up.... So things are not quite so depressing....

But time is short and I am in some pain so all of that will be another day soon. For now I am going to stick to my plan: Top Ten Techniques to cope with chronic pain.

An IG friend asked me the other day how I cope with being in chronic pain. She too suffers from a really painful chronic autoimmune disease and was having a bad day and she just assked me directly: how do you cope? It made me think. How DO I cope? it has been 2 years, 2 months now, and look at me, here I am, coping ...

So aside from taking painkillers, which is a personal choice and I am not going to even start that debate here, as it's up to you! (If you want to use lavender oil, tramadol, or bloody oramorph, knock yourself out... I don't judge... Your illness, your fight, your choice. Personally I have to be on painkillers/muscle relaxants or I couldn't function or leave the house or look after my children so there is no luxury of choice for me.)

So... these are my top ten recommended techniques on bad pain days. I really hope these help you. Please do leave me comments as I really love it. Let me know what works for you and what doesn't and what I have missed out or maybe things that I could try myself which I haven't thought of yet. So here goes; take note!

1. Divide your day up into periods of necessary activity, self-care and rest. Do the things that you have to do, whether that be caring for yourself/children/animals, looking after your house, cooking, cleaning, working if you're up to it; do some nice things to look after yourself - in my case usually watch an episode of a boxset I am into, or read a few chapters of my book, or listen to a radio program, or have a bubble bath, or go into the garden and breathe some fresh air or maybe even go for a walk if it's a really good day... you will have your own list by now, and if not make one; and then just rest. Lie down in or on your bed and shut your eyes and switch off. Set the alarm and let everything else drift away. I often leave radio 4 on and switch on my electric blanket and just have an hour or two off. Personally I know that I can never manage the school run morning and evening unless I have scheduled in some rest during the day. So if I know I am doing a lot of ferrying the kids around, I know I will need a lot of rest. If I can ferry the kids around less, I may be able to rest less, and do some more nice stuff. I now work one morning a week at my son's school plus am doing a lot more writing now and more stuff with the kids, so I factor the self-care and the rest around that.

2. Don't feel guilty for any of the above. You cannot operate at the speed of a well person and nor should you be expected to do so. Leave the guilt at the door. It is not your friend. If you are having a slow day, a tired day, a painful day; accept that and hope that tomorrow will be better. It helps me to imagine I am caring for a loved one and doing everything I can to help him/her when actually it is me. Because I have always been better at looking after others than myself. That's just how I roll.

3. Don't push yourself further than your edge. It is a good idea to push yourself a little and not just to sit in the pain saying 'poor me, isn't life terrible, I have this incurable disease and I may as well be dead'. I have been there and done that and got the T shirt and it's not much fun. But equally, making yourself act as if you are well when you are not well, and act as if you are not in pain when you are in pain, is just dumb. You will make yourself worse.

4. Let yourself be sad. Don't bottle it up. Share what you are feeling. Remember that you do not stand alone and there are a huge number of us chronic pain warriors out here who are fighting similar battles. Sometimes I write it down or I call the Samaritans (no shame in doing that) or a friend who is not sick of me (make a list of the people you can speak to who will listen without judgement and alternate them, because if you call the same person every night that person will very quickly make sure your call goes straight to voicemail) or I talk online in forums or increasingly on Instagram to fellow chronic pain sufferers. There are some beautiful people out there and people really want to listen and help. It is a little like the principle of AA, I think; people help because it helps them to help. If I listen and support someone, I feel better about myself, which in turn makes it easier for me to deal with my own pain and my own feelings... if that makes sense... I have occasionally been known to talk to total strangers about my illness, which can actually be surprisingly therapeutic as you know/hope you will never see them again (though they are probably thinking 'who is this crazy girl and why the hell is she telling me her life story?'). 
I see my GP every week or fortnight and she is great at listening; and I go regularly to acupuncture, and she also acts as a kind of therapist. I guess I should be in therapy too, but it just seems one thing too many. At the start of this journey, you don't want to talk about it. You want it to be a bad dream and you want to wake up. I know this remains the case for some people, but the people I see doing best are the people who express how they are feeling. As the months have gone on I have got better at not bottling it all up. Sometimes I just have a really good cry. Or I scream into a pillow. Or I talk to myself in the mirror. It doesn't really matter what you do. Just don't let it fester inside of you, poisoning you and making you feel that you are the only one who has ever felt this. Express your feelings around your pain. Listen to others. It really, really does help.

5. Having said all that, don't talk to the wrong people. You know who they are, and if you don't you will soon find out. The naysayers; the people who either don't believe you are ill at all or think that you are exaggerating. They say 'have you tried vitamin B?' and 'my sister had that , and she went to a great reflexologist; let me give you her details'. Or they say 'oh yes, I get really tired too, but I just push through it'. Or in my case, they say 'have you tried cranberry juice?'. No hun, I would like to pour cranberry juice all over your stupid fucking unsympathetic nosey annoying face right now, but thank you anyway for asking..... These people are toxic for us. They are no good. They do not want to help even if they say they do. They are just really glad that chronic illness isn't happening to them and they want to diminish your feelings and put you down in order that they feel better about their 'perfect' lives. Well sod that. Walk away. Give them a piece of your mind on the way if it makes you feel better. Sadly they may be not only acquaintances but friends and members of your family. This is a toughie but we are who we surround ourselves with.

6. Don't be afraid to cancel plans and arrangements. This is a tough one for me, because I used to pride myself on being ultra-reliable, but sometimes the nature of chronic IC and accompanying chronic fatigue is that I just cannot do something that I promised to do. The worst thing is when you have to cancel something that you promised your children. They DO understand and they WILL forgive you always, if they are anything like mine; but that doesn't make the disappointment any easier to deal with. When it is adult friends, it is easier. They are grown ups. If you said you would see a film / have a cup of tea with them / go out somewhere, and you are in too much pain, you just owe them a simple one line explanation. Their reaction is their problem, not yours. My true friends have always understood (even if they get annoyed at times, which is understandable), and the people who haven't understood that I can no longer be Miss Reliable and Miss Life and Soul of the Party are no longer my friends.

7. Distract yourself from your pain. Find ways to put your mind in another place. Acknowledge the fact that you are in pain and then do anything that you can to take your mind off it. For me, books and films / box-sets work best, closely followed by writing and being outside in nature. A long bath with essential oils and a good magazine is pretty great. A supportive friend coming over and just hanging out with you, even if you are curled up on the sofa with a heatpad or hot water bottle, and just talking to you about their stuff and making you laugh a bit; that works. Just take your mind somewhere else.

8. Take it day by day; hour by hour; or if necessary minute by minute. You have to put the blinkers on sometimes and just get through the day. Take the painkillers if that is what you do (and lets face it, most of us do) and just plod on through the time until it is time for bed. There is always tomorrow. We can always hope for a better tomorrow. We do not know what future years will bring either or what advances there will be in medical science. So do not look too far forwards, and awfulise about a future in which you inevitably get worse and die alone surrounded only by fifteen cats and nobody finds your body for weeks; and neither should you look too far back, idealising the time before you got ill. Things weren't perfect then, either, remember? Just keep it in the moment; it helps.

9. Do not put too much faith in the medical profession, whether conventional or alternative practitioners. I have known some great doctors and some not so great doctors and some fucking terrible doctors in the past 27 months of dealing with chronic illness. I have also met some amazing alternative practitioners who sadly have not been able to help much with my IC but are great people nonetheless and have helped with my stress and anxiety levels. But hear this: if you have an incurable chronic disease, you have an incurable chronic disease. Sure, there are treatments, and all doctors and alternative practitioners and therapists want to help you. Some doctors really will be able to help you and may find a treatment that works well for you. But they do not have a magic wand. I remember when I was diagnosed thinking great, that means I will get better now because they know what's wrong. Nope. As my father always says, 'I have known too many lawyers to put my trust in doctors'. Remember that they have hundreds and thousands of patients and you are just one of them. However much they want to help you, you have to be your own advocate first and foremost. Don't be passive about your pain. If you need help, ask for it. I have gone to my doctor begging for strong pain relief just to tide me over and she has given it to me and I think that was the right thing to do, on both our parts. And yes I have tried Vitamin B.

10. This is the best, so I saved it for last. Find your reason for going on. On days when the pain is really, really bad, and you just want to curl up into a little ball and never emerge into the world again, why do you bother? My reason for going on is my children, first and foremost; and also a little tiny glimmer of hope inside of me, a little bit of the old me, who is whispering 'things may get better, so don't give up. That man you're looking for, he may be around the corner. That book  you're writing, it may get published. That medicine you're taking, it might just work'......
Find your own reason. Some people have a dog or cat whom they live for; that animal gives them a reason for going forwards and the love they share really does propel them forwards (my cat is lovely but she is not my reason for going on; she knows how to take care of herself, though she does give good cuddles when she wants to). Some people have a job that they still manage to do part-time, or even full-time; a vocation that their illness may have made difficult but not impossible.
My children and my wish to continue writing, living, meeting new people, forging new relationships... these things root me in the world and mean that even when the pain is unbearable, I will not go gently into the night. I will rage, rage, rage against the dying of my light.

what will it take for you to understand????

You don't read my blog, although one day you might, and you might stumble on this, in which case, #sorrynotsorry , as they say on Instagram, which, by the way, I still love.

You don't read my blog because you say that although you are glad I am writing again , as it might 'lead to something' (what? self-realisation? not jumping off a cliff? or perhaps making some money?!), you do not want to read anything which might upset you further, given that I already make your life a total hell on earth and make you wish you had never been born.

Never mind that I have given you two beautiful grandchildren, never mind that I tried my hardest to impress you through the years with my straight A grades and my Oxford scholarships but whatever I did was always wrong because I never fitted into your expectations or filled the holes in your incomplete and unhappy life. I had my children too early, out of wedlock. I never made a proper stable career. I leant too much on my father. I am a good scapegoat, that's for sure. Good for kicking.

So as you don't read my blog, allow me to explain how I FEEL here. It's about the only space I have got. I have just got back from three days with you by the sea, which I was looking forward to; you said you would do all the cooking and it would be a chance for us to relax as a family.

Let me explain the reality to you in simple terms, even though you will probably never read this. The reality was that I was in severe bladder pain ALL THE TIME, and had horrible IBS (stress related, no doubt) on top of that. As a result I doubled my painkiller dose, already quite high, just to get through the supposedly relaxing days, and I took a strong sleeping pill at night, so it was hard to jump out of bed at 8am and 'plan the day'. I took the sleeping pill to avoid waking you all three or four times in the night, which is what happens when I DON'T take one. I did this as we were in a cottage together and to be honest it is hard to pee when you feel everyone is listening, specially when your muscles are in spasm as mine are frequently these days. So I was groggy in the morning. So shoot me.

In fact all I wanted to do was just rest in the morning until ten or eleven and then go for a stroll on the beach before having a bit of lunch and then relaxing with the children. The first day I was so ill I couldn't get out of bed until the evening, and did I pay for that? I did. The guilt, the guilt; seeping in. The sin, the sin. The second day the children made me go to the beach twice and it almost killed me. I did it, because how could I say no to their enthusiasm for rock pools and sea urchins and crab races and jumping over crazy autumn waves, but I felt as if I was going to collapse, and my bladder was burning, and I couldn't find a rock to pee behind as the beach was full (a sunny October Sunday, at high tide; I ended up in a field full of sheep, who didn't seem to care as I lowered my jeans and sat waiting for my tight tight muscles to oblige)... Then I would have liked to come back to a fire, and a cup of tea, and some TV (we did maage the x factor, but the accompanying guilt was just crazily disproportionate. I know it's crap, but it's escapism!) and cuddles with the children, and go to bed to read and listen to the radio.

It was not like that. It was not like that at all. By 8.15am the implication was that I was deliberately giving myself severe anaemia by not eating porridge with the family; by 8.30 I must have an eating disorder, it was deemed. By 9am my pain and understandable lethargy was interpreted as laziness and the door of my bedroom would burst open with you stating 'facts about the day'. Then, even if I did stay in bed resting, I lay there with guilt. By 10am it would be hopeless. The door would open again, asking me for my 'plans'. When you are chronically ill, the plan is just to get through the next 5 minutes. By lunchtime, I felt as if I had committed a seriously insane crime, and was being held under house arrest. The food thing. Crazy. I had to eat what you cooked, or nothing at all. I had no access to procure my own food, and cold dahl and rice or white bread or Coco Pops for three days in a row, when you have a bad stomach, is not appealing.

There was shouting. There was crying. There was whispering behind closed doors. There were my dear children, who had been expecting fun with a capital F, creeping up the stairs, to whisper things their grandparents had said about me behind my back.

Then there was my poor father, caught in the middle, desperately trying to hold his fleet of ships together when we are about as together as the Spanish Armada in their worse days... I am one ship; she is another. I don't think he has a favourite. I feel really sorry for him, as he grows older. I watched him out of the window on the beach. He stoops a little when he walks now. I want to make it all better for him and I can't, I just can't, and when he dies, which he probably will first, you will blame me and say I killed him. I love him more deeply than you will ever understand. He loves me no matter what I do and no matter what illnesses I have and no matter how many times I have fallen over, he had picked me up. You probably would have called the police and had me carted off by the men in white coats.

The climax came when we were leaving. I had found it hard to pack all my things and my son's things and get downstairs in one piece, and when I did, I found you shaking with anger. The kids were on the beach with Dad having a blissfully innocent game of 'houses'. I told you I was pretty upset at your attitude, at your lack of compassion when I am obviously in so much pain. You lost it. Sure enough you told me that I was killing you and killing my father and when you both ended up dead it would be my fault. You told me I was callous, selfish, lazy, a disgrace. Now look at this rationally, mother. You are neither of you young. One of you will die in the next ten, twenty, thirty (stretching it, but Grandpa has made it to 95) years. When you do, you cannot lay your death at my door as 'murder' because of the stress of my chronic bladder disease. 'If you leave this house without eating anything, I will be prosecuting you for murder when you kill my grandson on the m5 after you have both died in a car crash'. This was her parting shot. Bearing in mind it is hard to prosecute someone  after they have already died, it was still a cutting insult. I made it through lunch (bacon, egg and tons of baked beans) and then burst into tears on my daughter's shoulder upstairs . This was the third day. My son was not well by this point, with a cough, so hadn't gone back that day for school, but had to go the next day so we really did have to leave (my daughter has a two week half term). She didn't want to stay there with the atmosphere how it was but in the end decided to stay and 'fight my corner'.

I was psyching myself up for the 150 mile journey, planning where I might stop to pee/rest, when once again the pressure : ' you are wasting our whole day; when are you going; all you have to do is get in the car; we KNEW you wouldn't leave'.

People: this was at 1.30pm. Why was an imaginary clock ticking? I wasn't causing any harm. It was like being in a cross between a truly awful Big Brother House filled with your own family, and a really bad version of the Crystal Maze, if anyone still remembers that. Next challenge? Quick? You have three minutes to complete the task of reaching the car and driving away.

I managed to get into the car, hug my daughter and father, and drive away. I managed the journey, though it was long and at times painful; my son was good as gold; we got home by 5ish. I unpacked the car alone and fed us dinner alone and we watched a film and had the much-needed cuddles. By 9pm we were both asleep and he was in school the next day.

What will it take for you to take my illness seriously?

Shall I buy you a book on Interstitial Cystitis? Another one? Shall I take you to my next consultant appointment (oh no, you're away on a holiday, and anyway you would just yell at the consultant (though she may be a match for you, she is pretty fierce) that your daughter is a crazy attention seeker and you would not hear her words that I have a SERIOUS DEBILITATING BLADDER CONDITION.). If you listened to her, you would learn. IC is real. It makes you tired. It makes you ratty. It takes your energy. It takes your patience. It sucks the life out of you. You are no longer the person you were before. Your bladder hurts you. All the time. Fun has gone from life. All that is left is endurance.

Ha! That's a joke. Gone is the person I was before; what a shame. Because you didn't like who I was before, either!!

Will she ever take this seriously, I asked my grandpa today? When?

'When you're in a wheelchair, darling, if it comes to that', he answered drily. 'And probably not even then.'

We need to be making contingency plans for what happens if Dad dies first, because sure as hell you are not throwing me and my children to the wolves, even if it would make you feel justified for enduring the years of hell that I have supposedly 'deliberately' put you through by contracting a painful autoimmune disease ENTIRELY WITHOUT ASKING FOR IT.

Elmiron failing, the lack of Jamie Oliver, Ebola, Jihadi terrorists and other cheerful musings....

Apologies to regular readers for being MIA. Apathy aside, it is down to three things: children, illness and Instagram.

Starting with the latter, I discovered it a few weeks ago and am hooked. Have met some brilliant people with other chronic illnesses who understand totally what I am going through even though their own pain is different. Am really pleasantly surprised by what a community there is on there and how much support I can give and receive. My name on there is cath_free if you want to find me. Have also met a few wankers but hey, they're everywhere, right?

Moving onto my beautiful kids, Pre-Pubescent Beauty has started secondary school and is suddenly seeming to be 11 going on 15. It's incredible how they grow up before your eyes. Her days are long and her eyelashes longer (I suspect she's nicked one of my mascaras) and she is often in a foul mood but then with growing maturity apologises for it ten minutes later. She looks increasingly beautiful and increasingly like I used to look when younger (if I can say that without sounding stupidly vain! Mostly now I look like death warmed up!). Blue Eyed Boy is today off school with a cold so enjoying listening to tapes (yes, I still have those things) in bed and watching CBBC under a blanket. He is in year 3 now and loving every element of school - friends, sport, work, his teacher, his classroom... - everything except school dinners. Every day it's the same. 'Can I have a packed lunch?'...

This moves on to the illness. I am not going to moan.... Well maybe a little. Was talking on Insta (ha! this is what my friend calls it) about the things we can no longer do with chronic illness. I said running around the park with the kids is one thing I miss most. When (if) we get to the park I sit on a bench, near the toilets, and watch them run on their own. Try to take a friend for them. And they're older, I suppose, but. But but but. 'Can I have a packed lunch?'. Well my darling boy before autumn 2012 and everything after, you could have had what you liked, as my energy was boundless and I would have made you 5 packed lunches a day had you needed them, but now the thought of doing this every morning on top of everything else is just one thing too many. I know this is impossible for you to understand and this makes me sad.

It also makes me sad that the bloody school can't provide a decent hot meal for them in the middle of the day, especially as for us it is free!! Instead am going to email the class mummies and hope some of them have the energy to campaign for better school meals. Jamie Oliver why hast thou forsaken us? Maybe I should invite him to my son's primary school. Can think of plenty of sexually frustrated 40+ women there who would tie themselves to lampposts and burn their bras for school meals to improve if he rocked up. Ah now, no need for that kind of cynicism, is there?

Anyway, thoughts of Jamie Oliver aside, it's been a pretty rocky time. It seems that the Elmiron is doing fuck all, which is a shame, as it is the last medication I can try before surgical interventions and things which fill me with 3am horror. Moreover, the Elmiron seems to be screwing with my white blood cells and also the diet I have been trying to adopt (alkaline, anti-inflammatory) has left me so anaemic that my GP said she was surprised I was still walking around and not strapped to a drip in the local hospital (never want to be an inpatient there again in my life.... but never say never). So my main aim is not to collapse in Waitrose, as I did last week, as I really might end up in hospital otherwise. Their system is so appalling that once you're there it takes weeks to get out, even if you are not ill, so in this state i'd be there for months! So am addressing the anaemia and waiting to see what they tell me to do about the Elmiron. My GP seemed pretty worried.

Am managing, just about. Some days better than others. Just don't tell me to be positive. I can actually manage to be quite stoic, just so long as people don't say 'it could be worse'.

Of course it bloody well could be worse. And it will be! Jihadi terrorists are about to invade us via Turkey and moving on up / release biological or chemical bombs in all our major cities/ convert us all to radical Islaam or cut our heads off.. and if they don't get us, Ebola probably will. It terrifies me. If I caught that, I would definitely die. As soon as it comes to England I am going to hole up in my house and hibernate. But the children will still have to go to school... The decision not to screen incoming people from affected countries at ports and airports seems to be about the most stupid decision that this stupid government has yet made. At least the Amerians have got something right.

My first 'meme'

I made one! All my own work! So cool

some 'memes' which I really like... check them out. haven't tried to make my own yet though but will be doing so

Fall seven times, stand up eight

 

 

Here's another... So the whole process of living with chronic illness is like running a really slow, really pointless marathon, with no finishing line. You are constantly falling over and you constantly have to pick yourself up. However often you fall, you can't stay down.

With IC in particular, you have the pain of needing to pee, the brief relief afterwards, and then the pain building up again, which becomes unbearable if you can't relieve it.... Fuck the embarrassment, fuck what other people think....I am way past that..... It's the constant process of falling into the red hot fire of the pain, and then dusting yourself off , picking yourself up, and carrying on with some task you need to do (in my case, caring for my two children), before the pain hits again and you fall into it once more.....

I read a great quote today. If you're sick of me complaining about my IC, let me set fire to your balls and see how you like it.

The silent bravery of everyone who lives daily in chronic pain and does not give up / hurl themselves off a building or under a bus.... it's remarkable, when you stop to think about it.

symptoms unchanged, life unmanageable, pain untamed

So it's September again.. IC Awareness Month... my second since being diagnosed with IC.

I am painfully aware that I have done nothing to raise awareness of IC in the past two weeks except for to have one conversation with a friend about what it is really like living with it... But then I've been on the Elmiron 6 weeks now, and it is strong, and it's making my hair get thin, and it's not helping my bladder pain at all... and I am depressed, which never helps me to write much. Anger, yes; depression, no.

I think a year ago I was a lot more angry about having IC than I am now. I have almost, almost accepted it; which is not to say that I am ok with it, just that it has come to a point where I think well, here it is, and what am I going to do to get through this day if I am going to have to carry on living? But not in a particularly positive way; more just like a grim resignation.

Last September I spent every day furiously writing about what it felt like to have this godawful condition, how I live with it, how I wish I didn't have to, how other people make me feel when they don't understand or don't want to know or think I am exaggerating or making things seem worse than they are... I wrote and wrote.

This year, I feel like writing less. I don't feel like writing very much at all...
And that's ok.
It is fine to be quiet too. It is ok not to rant and rage all the time.

Anyway, Tali has once again pulled it out of the bag despite feeling really ill herself, and set up several cool projects in tandem, one of which is writing something through September from a word, or a quote, or a song, or a picture that inspires you. Visit www.icramblings.com for more info.

Here are my three offerings so far:

Isolation

Alone inside my body
I just want it to work again
I just want to feel like myself again…

But after two years, this is me.
Alone inside my family
Telling them not to worry.

I wake at 5 to pee for the fourth time this night
I creep to the bathroom trying not to wake the kids
Trying not to cry.

I walk out into the world alone,
Holding my head up high
Though my bladder is screaming, burning, bleeding…
‘You look well,’ they say.


Better to fight for something than to live for nothing?

In my darkest days IC feels like living for nothing.
I am fighting, so hard, but
A constant battle which I cannot win.

 I am doing every-fucking-thing…
Eating right, no booze, no spice
Bland and boring
Meds which make my hair fall out.

 And where does it get me?
Symptoms unchanged.
Life unmanageable.
Pain untamed.


Tear Down The House
https://www.youtube.com/watch?v=jbrF00Y4qE8

So here was a song to respond to rather than a quote or a word.
I don't usually respond emotionally to others song choices but I thought I would give it a whirl, and within thirty seconds, I was in tears.

'Tear Down the House that I grew up in, I'll never be the same again. Take everything that I used to own and burn it in a box.... I have no memory of who I once was, and I don't remember your name'; these exquisitely simple lines just made me sob, thinking of who I was before I got ill and who I am now; the people who were in my life and the people who have left my life and those who have stuck by me.... the finality of losing two years of my life to this illness and god knows how many more.... the stark reality of it changing absolutely every fucking thing.

I have nothing else to say about this song really except what a beautiful and cathartic choice it was and how much it just made me cry and cry completely unexpectedly. Thank you Tali.



More to come, no doubt...

Perhaps tomorrow I will feel more inspired to spread awareness outwards instead of purely reflecting on where this 'journey' has got me to after nearly 2 years.... but this is where I am today, so I am just sitting with it: symptoms unchanged, life unmanageable, pain untamed.

Interstitial Cystitis Awareness Month

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

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

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

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

So today:

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

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

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

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

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

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

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

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

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

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

school holidays vs chronic illness

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

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

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

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

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

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

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

First I owe you all a big apology.

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

It has been too long.

Much too long.

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

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

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

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

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

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

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

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

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

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

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

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

So be it.

That's where my head is at.

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

Rainbowgirl xxx

Needed: an Norton Anti Virus Tool for my bladder please

Earlier today, my computer was dying.

I was seriously contemplating having to buy a new laptop, after throwing this one out of the window. On top of several other external things that have gone wrong on top of the relentless IC, this was a step too far, in the past 48 hours.

And then I found the wonderful, polite, helpful Bharaswazi R J, on the Norton Chat Support Forum. Somewhere in a huge call centre near Delhi, he settled down to help me.

I had no idea that this feature even existed, but in desperation I 'sat back to let the expert help' (don't have much faith in doing that anymore funnily enough).

I signed over remote control of my computer to this amazing guy and within an hour, he had totally fixed the problem, whilst giving me more reassurance than any urology specialist I've had the misfortune to meet over the past year and a half. He kept telling me 'everything will be fine, madam;' and it was, it was fine, it was fixed.

Why, in 2014, can we fix ailing computers but not ailing bodies?

WHY is more money not being poured into healing our ill internal organs rather than increasing the speed and ease of our internet connection?

It's ridiculous.

Laugh or cry; I feel like screaming.

But at least I've got my computer back again. If only bodies were as easy.

still here

just an update to say still here; have not felt well enough to write - horrible flare up of symptoms again in the past few days, after some better days last week.... just crawling through the hours really..... such has my life become. loving my children and hanging onto that love... trying to see the flickers of sunlight in the raindrops....
will write when feel more up to it

idea for a tattoo?!

in defence of the departed

https://www.youtube.com/watch?v=kY3v2KQkGmE

This is Peaches vs the ghastly Katie Hopkins explaining and defending Attachment Parenting on This Morning. A dedicated, passionate mum if ever I did see one. I just wonder what on earth was going on beneath the surface.

RIP Peaches and the carefree indifference of the 1990s

http://www.youtube.com/watch?v=6CfxkFj8iAg&feature=kp

Bob Geldof looks just grand in this video. Watch the dancing guy back right, who stands completely still then just watch his feet go.

Bucket list 1. Go to Ireland.

not bothered

To all the school beautifully-manicured, bored-shitless, bitchy-as-you-like yummy mummies

I'm not bothered by your blank expressions when you ask me whether 'everything is better now' and I say 'no'.

I'm not bothered by your 'my child is better than your child' small talk because I know it to be a lie and even if it were true, I wouldn't be bothered. Children aren't possessions to be compared at the school gate you fools.

I'm not bothered that you shop in Boden and The White Stuff and Jigsaw and wear matching boots over skinny jeans over a body that you work out much too much because your face has had it. I'm not bothered that you'd rather be a size 6 than be pretty.

I'm not bothered that you think I'm fat.

I'm not bothered that you talk about me behind my back.

I'm not bothered that you are bothered by how bright and sparky and successful my children are because you'd love it if they weren't; then it would give you more to gossip about.

I'm not bothered that I can't, won't ever, and have no wish to drive a fucking 4 by 4. In . A. City. Or anywhere else.

I'm not bothered that your uber-husbands are rich, successful and (occasionally) vaguely handsome; they're probably sleeping with their secretaries behind your stupid backs.

I'm not bothered if you pity / laugh at / despise / pour scorn on / even like  me. I'm just not bothered.

Think what you like. Say what you like. I used to care, I really used to care, but now, I just don't.

wow. read this.

http://invisibleillnessbattle.wordpress.com/2013/09/07/6-things-about-chronic-pain-you-didnt-know-you-knew/

IC suicidal ideation

I haven't written much, because there are not many words right now.

I am keeping on keeping on keeping on.

I am wading through the days, like thick mud. I am caring for myself and for my children as well as I can. I am doing the necessary things. I am caring less and less about the outside world; about anything, very much, except what is absolutely necessary.

My blinkers are on and I am plodding onwards with still the very best part of the day being when I can take a tranquiliser and go to sleep so that there is no pain for a few hours.

Sleep is a little death , who said that? I can't remember. I am reading and reading and reading, but I remember less and less.

It is as if everything is falling away and I am in the world but not of it. Things that mattered just don't matter anymore. The only things that still matter, that always mattered, are my children.

I have become slightly obsessed with Peaches Geldof. And I have to ask myself why. It is not as if I was obsessed with her while she was alive. But I think what she did was brave. If indeed it was intentional. And yet that leaves two little children with no mummy; how can you square that with yourself?

One in four people with IC think about suicide a LOT. I read that somewhere. And the rate is 10% higher than in the population as a whole. Ideation, where you simply imagine death as a blanket covering you, like a permanent sleep, is common too, because there is no pain. NO PAIN. imagine that , if you suffer from chronic pain.

Sometimes I have even got to the point of resenting my children for keeping me tethered to this world.

And that scares me, too.

My daughter asked me, in the wake of her Grandma dying, why everyone we love has to die. As I tried to comfort her, she turned to me and asked me 'Mum, with all that you suffer, don't you ever think it would be better just to die? If you didn't have us?'. ' But I do have you,' I replied. 'But what if you didn't?'... 'But I do,' I repeated. 'I do not deal in imaginary scenarios, sweetheart, only in realities. I do have you and so that's that'. But although I tried hard not to lie to her, not to tell an outright lie, there was a lie in my words.

Because the thought of just not being, not carrying on, not waking up in pain and going through the day in pain and getting up to the bloody school to realise I will either have to pick the children up as quickly as possible in pain or look for a toilet urgently (there isn't one that parents can easily use without embarrassment of one kind or another), not holding conversations where I can no longer focus on what the other person is saying because all I am aware of is my bladder.... is so alluring. It is like a siren's call: not to be, not to be, not to be.

I'm pretty sure that's what Peaches heard and I think , in a way, it is gutsy to do what she did.

And yes, I know all the counter-arguments. But that's still what I feel.

When you have to force yourself to keep on living, what kind of a life is it anyway?

(The antibiotics are not working, by the way; or perhaps there is a 5% improvement; it's so hard to tell. But it's basically the same. And I know I can't live for thirty or forty years like this and moreover I know that I don't want to.)

So where is the choice?

When we no longer have a choice, what new fresh prison hell is this IC life?

we are all alone anyway so what's the difference who's with you

I realised the other week, in conversation with the herbalist I've sought out to help me alongside the antibiotic therapy I'm trialling, that I have been alone without a man for months and months. For the first time in a very long time. And isn't it ironic, and sad, that I only now realise the value of not depending on another person fully; that I realise that their leaving isn't going to kill me; a lesson I might have learned years and years ago when I was healthy and could have done so much.

But it is only this hideous experience of long-term chronic ill health which has taught me that in fact we are all alone anyway; we are all born alone and we all die alone; everyone, even our children, are just people we are with somewhere along the way.

It is sad, so sad, that I have learnt this lesson only now, perhaps too late to ever put it to any good use.

Blue Eyed Boy turns 7

Seven years ago, I had just had my second and - though I didn't know it then - almost certainly my last child. My beautiful baby. His father had left me early in the pregnancy, only to return at the end (aren't men great?!). I had fought so hard to keep him, but I was overtaken with numbness when he was born, an emergency C-section again when I'd wanted so much to give birth naturally.

For about four hours after the delivery, I felt blank. This child was angry, screaming... I felt nothing. Is this post-natal depression, I wondered? Everything seemed empty and pointless and just blank.

But then I held him, and fed him, and looked into his deep blue eyes... I felt what a gentle yet sturdy, strong soul this boy is, and my fierce love which had been there all through the pregnancy returned with such force it made me sob.

Here was my boy.

And my beautiful girl, aged 4, visited us the next day, and held tight to her brother's hand (never, ever 'half' brother, there are no halves in our family unit, we are a triangle); there is a photo of that day, the three of us.

These children now are my anchor; they are the only thing that keep me rooted in this world. Without them, and with this disease, I would have drowned, or floated away on the waves. I would have dissolved. There would be no reason to carry on. The way these children need me, thrive around me, even when I am so ill I cannot leave the house or even my bed; the way it doesn't even enter their heads to be angry with me for being ill, which is the reaction of so many others (I find it bizarre, but that's how it is). My kids just accept how things are, and try to make the best of it.

Such stoicism.

Their faces this morning when they saw the surprise birthday present trampoline out of the window, and went out to bounce in their dressing gowns. Their ability to be happy just because. Their ability to live in the present tense. Their spirit.

The hardest thing about chronic illness is the way it limits your whole world, shrinks it to fit a tiny space where you once had the freedom to do as you chose. Everything you took for granted before the chronic pain took over becomes a luxury, a challenge, a torment.

Now, a trip to the park is a mammoth expedition, plotting where the toilets are, how much energy I will be able to muster up, whether we would be better off just watching another DVD. Gone are the days of spontaneity. This is heartbreaking.

And yet the fact that my children haven't given up on me means that there must be something worth holding onto, something precious still in this useless body.

Something that for two little people is called home.

Please let that be enough.

random Sunday evening thoughts

So it's Sunday evening.

More random comments from Blue Eyed Boy on watching the Voice: 'When I am old, I want to be Tom Jones', and 'I am going to pray just like that; the Bizy praise'. Eyes closed, fingers pointing to the sky, silent rhapsody.

Results tomorrow on private urine 'broth' cultures. Am so scared of what they will have found I don't know what to do with myself. I don't like the doctor very much who has done these cultures and I don't think she's very good at managing my anxiety (have never actually met her; all over phone), so really am not looking forward to it all one bit. Worried I will just fall apart.

Dragged myself through family party today - I had to go, even though I was laid up in bed yesterday - as it was my dear Grandfather's 94th birthday or something - with assorted family members, some of whom I see all the time and some I hadn't seen for years. Couldn't summon up the enthusiasm necessary. Felt like a ghost or shadow of myself. Tried. Sat down. Tried harder.

Everything just seems bleak and frustrating and horrible.

And there are far too many doctors involved in my care now and I honestly do not know who to listen to first.

more uncertainty

So this week brings yet more medical uncertainty in the form of indeterminate high vaginal swab results... Sent off for private culture and have come back with flora which can bring problems, but don't always, and bringing me so much anxiety into the process. Last night I was on the computer all evening, after settling the kids, reading and reading and panicking... Tonight I have only distracted myself through watching really , really depressing TV, about a serial killing widower and then the global spread of incurable TB. Puts everything into perspective ???!

There is certainly abnormality and there are certainly signs of bugs which shouldn't be there but they can't identify which bugs or tell me with any degree of assurance whether or not this is all linked to my IC (it's probably a red herring, says my GP, but I chase these results like a blood hound because anything at all which might be treatable and might be connected is surely worth chasing!).

I am just so tired of being my own doctor, my own advocate.

I am having the swabs repeated, at my GP surgery and again privately, and then all the results will be compared by whichever doctor I have the most faith in at the time, and we will then see what we all think. In the meantime, I just have to sit with it. Not something I am very good at!

It's ok when I keep it in the hour, in the minute, and just focus on the children, or the housework, or resting, or reading, or writing, or whatever I am doing right now.... but when my mind starts to wander, I've had it.

And of course it is reasonable to be anxious, after this length of chronic illness. The problem is that the anxiety is becoming a real problem in itself.

medical and emotional update

So I had another horrific time at the torture chamber they like to call a local hospital last week, having tubes rammed into every available orifice and doctors not believing me that the painkillers wouldn't work because I was already on them and so immune to them....

Somehow, because the bloody doctors did not listen to me, the patient, I managed to cause havoc (how would that happen, I have no idea?!) and the consultant who filed the report on his findings wrote that it was 'easily the most difficult colonoscopy I have ever had to perform'. Bearing in mind he's a consultant, he's talking thousands upon thousands, and I was 'the worst'.

It was because they wouldn't give me Pethidine at the beginning. If they'd done that, all would have been well. But they gave me Fentanyl, which I already take so am already used to. It's not rocket science, kids , is it???

I don't want to go too deeply into it, though, because although I am deeply traumatised by yet another stupid local hospital fuck up, the upshot is I do not have colitis, it seems, or even gastritis; pending a number of biopsies coming back in a week or two , as Coeliac is a remote possibility... but it could have been a lot worse than it seems to be inside my stomach and bowel.

Seems the bleeding was merely from a few haemorrhoids which I knew were there, apparently; not the Elmiron.

So, I could go back on the Elmiron. Oh , joy! But at least it is an option.

The plan first is to get my urine cultured by this super amazing action woman called Dr A, here in the UK, who does cutting edge urine culture and works out what nasty bugs may be lurking undetected in my bladder, then prescribes treatment. Scary, full on a/b treatment, but still. She says she can't cure me, but she can help. And she is working on curing IC. At least she cares.

A lot better than the increasingly annoying Cheshire Cat, who sits in his big fat office smiling his big fat smile, spending less time with me now I'm not a private patient, and saying 'We do not understand Interstitial Cystitis, sorry'. This is my life, you fucker!!! And my children, and my extended family and what friends I have left.

So that's plan A. The broth culture. I can give you her details, if anyone is in same predicament and wants another route forwards/sideways/diagonally across....

Plan B is back on the Elmiron

Plan C is a new consultant.

Plans B and C may switch order.

The trouble is, I am losing all hope, becoming moody, irritable, horrible; I don't like myself very much so let alone what anyone else thinks. My Very Welsh Mother is becoming more and more like a parody of herself ('there is a dark secret,' she yelled tonight. 'Well keep it to yourself,' I yelled back, 'because there are two children, one cat, and a woman in her thirties in chronic bladder pain in this house, and we don't want to bloody well know'. Unsurprisingly, she left. I think perhaps she is schizophrenic. I know I have put her under far too much pressure. I feel, alternately, extreme pangs of anger and guilt. Not good for ones health, I'm sure...)

My boat is sinking.

Who will go down with this ship?

My white flag is up already, but I think everyone has stopped watching.

The second worst thing about chronic illness is that it is boring. The worst thing, of course, is that you can never escape the pain, and your beautiful kids and lovely loyal friends (not the stupid bitches who've abandoned me because it all got too much like hard work, but the few loyal angels who haven't, and I love them for it) - however much you love them and want to be 'cheerful', they know you're not, and they cannot have you back, pain-free, as you were before you got ill. Blue Eyed Boy feels this desperately. I hurt him, when I was the one meant to stop him from getting hurt. EVER.

But what I mean by boring is that folk stop watching. Why watch someone dragging themselves through the days, rarely laughing, or doing anything at all? Why would you want to watch that? Why would you want to read about it (although enough people seem to, on here, and I've got other leads for other writing too....)

And I have always thrived on being watched. Up til now, always pretty, always the centre. Now, ageing rapidly, I start to feel I am fading into mercurial dancing dust on the waves. Save me, oh save me, from being blown forever outside the loop of time, cries Rhoda in the Waves. But do I really want to be saved anymore? Do I? I must, I must, I must, says my Self, with my two beauties asleep in their beds next door. But inside my heart? I'm losing hope.

feedback

Random recent feedback on this blog:

'all she ever talks about is herself, and fuck she's a brilliant writer'.

'she thinks the things and says the things that I don't dare say about IC'

'I can't face reading it, I just can't; it makes me cry and sob and I have to turn the computer off'

'it's hysterically funny; it's so compelling; don't stop writing'.

These are four different comments I've had, two from total strangers, two from people I know, over the past week. It's strange how the same thing, the same words, can provoke completely different reactions.

Firstly of course I talk about myself. That. Is. What. This. Blog. Is. About.

If you want to read about tree monkeys, Prada or Naval History of WW2, I can't help you much.

This is about me. I say it , I say it, I'll say it again. If I bore you, don't read it.

But If you read it and I don't bore you, I'm so happy. If I make you laugh occasionally, or at least splutter, then that too is good.

If I shock you, great.

If I make you feel less alone if you too have chronic pain, that's the best thing of all.

fear

I am really scared, really scared, REALLY SCARED. I don't want to have further tests. I don't want to be a patient. I don't want to have self induced diareahha all day tomorrow. I don't want any of it to be happening. It has all been happening for too long; my resources to cope are depleted. I want it to STOP.

I miss being a proper mummy. I miss being ME.

je n'aime pas La France, mais ce n'est pas une probleme; je t'aime, tous mes lecteurs Francais; je t'aime beacoup

Now my French isn't brilliant. What I mean here is that although I don't like France, it doesn't matter, because I love you, all of my French readers, I love you all so much. I may possibly have said I love all my French writing tables, which would be a mistake, but then again if you are one of my growing number of French readers (78 in the past week?!) and you're reading this in translation, you will, I hope, forgive me. I don't think of you as a writing table at all.

I only don't like France only because every single trip I have made there has precipitated some disaster or caused its own version of Nightmare on Rainbowgirl's Street. However calm, romantic and free I have tried to feel, I have always been so relieved to return to England.

For example, the disastrous trip to Paris when I was 16 with my school nearly ended up with me arrested in the Red Light District for having broken the 'dorm curfew', getting horribly drunk and pretending I was the jazz singer booked for the evening; I think I even took the stage and began to sing before I either was caught or collapsed with alcohol poisoning. I remember a school contemporary trying to take my contact lenses out for me while I screamed at her that if she made me go blind I would sue her but it wouldn't matter because I'd be blind anyway (she got them out, all credit to her).

And my last horrible, sad and degrading trip to France in the late summer of 2012 was with my High and Mighty Ex Partner Mr Sleezeball and our 5 collective children (only 2 are mine, I hasten to add, and thank the Lord above he is the father of neither), where I spent most of the trip sickening for the illness I have been stuck with ever since, whilst pandering to this stupid English man's every whim ('je voudrais un omelette pour mon mari') - husband just made me feel better, the word just made it seem less ridiculous to be dragging all these reluctant (and in his case, oversized) children around a French port looking for an omelette and a small amount of red wine for my soon-to-be-ex partner and his bleeding colitis, whilst feeling increasingly panicky and ill myself. (I'm sure if he had been French, he'd have been more of a gentleman).

Oh and I trod in some human faeces by the side of the road and managed to smash the hire car. Perhaps these were omens that everything was about to go wrong. France was the backdrop for these events - and many others which I shall keep to myself (except the Hornets. I have to mention the Hornets. If you're one of my lovely French readers, please find a way to deal with these. They terrify me more than anything else in this world, except hospitals).

Don't get me wrong. I have no problem with the French. Well, you're a bit superior aren't you, but then, you have a right to be, on the whole. It is not stupid that the French don't like the English. They have sense!! We English are not very nice!! We are really crazy!! Come on!! We don't even like each other; we are constantly battling each other in these ridiculous, ill-disguised social classes ( a bit like India, only we haven't really got extensive slums yet that you can see from your 5* hotels, although they're coming). Or do they do that all over Europe too? Well, we do it here, and it's idiotic. We compete with each other all the time, we have absolutely no table manners, and yes, we are dreadfully unsophisticated.

So if you are French, and reading my blog regularly, hello! I like you, automatically, because you have recognised that I have a little (tiny) bit more sophistication, imagination and style than your average English fool.

Or perhaps you are reading it thinking 'you crazy chavvy English single mother, get a fucking life!!'

In which case I say, Vive La France! Vive La Revolution! Le Roi Est Mort; Vive Le Roi!

I'm just amazed that anyone in France is interested in me. Amazed, flattered, and a little confused (ooooh ... perhaps THAT is where all my so-called 'friends' from pre-illness times have gone... maybe they're all living in a commune together slagging me off.... ok paranoia now, stop right there.)

So it's horrible invasive camera tests down my throat and up my bum this week at the same time; I am terrified. I've had both , but never at the same time. I rang the NHS 'nurses' for advice. Their 'advice' was follow the instructions, come in on the day, try not to worry. Ask any questions when you get here. England. See what I mean? This is why I hate hospitals even more than Hornets, though it is a close run thing.

So, it'll be laxative central here on Tuesday; by Friday I should be back to my 'normal', increasingly agoraphobic self, with little memory of the point of leaving the house for over half an hour except for some very specific purpose but hopefully with some idea of why I had two episodes of rectal bleeding.

Wish me luck. Or tell me to fuck off, in French if you like.

Whatever floats your boat, mes amis. Whatever floats your boat (so long as it's not a canal boat, in which case I have plenty more choice words for you and your scummy parasitical infected waters, but not in this post).

i should be so lucky...

My six year old and I were cuddled up together watching 'The Voice' last night and he turned to me very seriously and said 'Mummy, I have to tell you something.'

He hesitated as if he didn't quite know how to phrase it. 'You can tell me anything, sweetheart,' I said, slightly worried. He still didn't say anything.

'Well,' he said finally, 'I have been thinking and if you couldn't be my Mummy anymore , which won't ever happen anyway, but just say that it did happen, well...'

All kinds of things were going through my mind.

Did he still think I was at death's door?

Did he want to be living with my parents, maybe?

Has the continued absence of his arsehole father, who has not been in touch for weeks, really got him into a total state?

I muted the TV.

He reached for the remote and un-muted it straight back.

'No need to panic, Mum', he said. 'All I was going to say was if you were not my Mummy, I think, well, considering everything, I would choose Kylie.'

I looked at Kylie Minogue's young, fresh-looking face, at 43 or 44 or whatever she is. I don't begrudge her the botox and the facelifts and whatever else she has had done; the woman has been through the mill with her breast cancer and her failed relationships .....

And yet still, she is a Diva, and attracting a brand new generation of fans under the age of ten, who know nothing of Charlene on Neighbours, or Kylie as Gay Idol, but just know her as Kylie, the new, cool judge on the Voice, more cool, definitely more cool, than the very sassy Jesse J.

Go, Kylie!

But I won't be handing her my son anytime soon.

'She doesn't have kids, you know,' I said later on.

'Poor Kylie,' said Blue Eyed Boy. 'See Mummy, you're the lucky one really'.

be careful what you say

... because I've just discovered it's easy to find the IP address of abusive/nasty comments, and so report them...  I'm sure soon this kind of thing will become a crime, and reportable; when the law catches up with technology. I'm educating PPB about cyberbullying at the moment , and I do not intend to become a victim of it myself through writing a blog which is helping me and lots of others who are either single mums, or ill, or just enjoy reading my thoughts.

So if you have nothing useful, pleasant, interesting or civil to say, don't say anything.

but I LOVE comments: just not poisonous horrible ones.

topic closed now!!

my little pussy cat

... has gone to be neutered today :(

How we pondered over the rights and wrongs of this decision. But under our current circumstances it is the right and responsible thing; I just hope that we weren't too late - she is six months old already.

First I've been ill non-stop so kept having to cancel, then it was all set for last Mon but the vet announced she was going skiing! So then it was postponed AGAIN....

She was sooo cute this morning; she knew something was up.

My mum took her up in her basket to the vet's, who has promised to ring me if there are any problems.

Bless her. Had to be done though. One kitten is hard work; six would be insanity.......

Still really upset over my evil blog reader last night. Hope he/she/it has moved on to read happy blogs about how the world is all beautiful and wonderful and there is no illness or pain or sorrow or climate change sinking our country... and everyone is happy happy joy joy and isn't life just so bloody great.

Toxin

I am happy that so many people have already read my last two posts, but I just received my first ever instance of cyberbullying. I haven't posted the comment; I have the option to moderate or delete.

I have never done this before, because it goes against my principles, but this post was just pure poison: 'you are moaning, why not ask others about their lives, people don't like people who moan, no wonder everyone has left you,' and that's me putting it really, really politely.

It gave me a shock - that I am not writing a diary - that not everyone reading this is reading it sympathetically.

So let me make this crystal clear.

Firstly I think I know who you are.

Secondly, whether or not I'm right, fuck you!

The internet is a big place.

If you don't like what I'm writing, don't read it.

Click a button; read something else.

If you have something productive, interesting, challenging to say; I would love to hear it.

If you want to get in touch about something IC or health related, or if you're a fellow single mum, I have loved hearing from you and will continue to welcome messages from strangers of this kind.

But kicking someone when they are down is bad, bad karma. It will come back to you tenfold, on top of all the other cold, bitchy things you've no doubt done ( and yes, I'm sure you were a woman).

It just means one thing: you are a nasty person. Accuse me of being bitter? Look in the mirror, lady.

Accusing me of 'moaning' after the week I've just had: well, perhaps I am, and perhaps I have a right to, and this is my space. My room. My blog. My readers. My choice.

You have no idea what it is to be inside my head; nor do you have any right to judge.

Go and deface a Tracey Emin exhibition; or burn some Sylvia Plath poems.

And then go and take your lovely, caring personality out into the world and stay away from me.

If I could block you from here I would; I can't, but all I can say is, if you don't like it, get the fuck out.

Nuff said.

absent and ex friends

On the subject of friendship, it has been on my mind a lot.

What does it mean?

and how do we react when our friends get very ill / have a breakdown / need help?

Two years ago, when I was with Fuck head, AKA Mr Sleezeball, source of my illness and first on my hit list (if I had one, which of course, I don't), I would have said I had ten close female friends. perhaps more. fifteen? some local, some in London, a couple abroad. perhaps even twenty. Sometimes I even used to count them (is that strange? oh well).

I remember Sleezeball used to say 'gosh you have a lot of friends, I only have true one' (yes, that should have been a warning sign, especially as this said friend's name sounded like a disease). I could have sworn that most of them would stick by me through thick and thin.

And then disaster struck. haemorrhage, hospital; permanent illness began.

And gradually, like rats leaving a sinking ship, my circle of friends began to disappear.

Some people unavoidably: two friends , and my favourite cousin, emigrated, all in close succession, nothing to do with me I hasten to add, but a blow nevertheless; and one lives permanently abroad so we've always been close but correspond mainly by email. the friends in London I can no longer see easily, so though they haven't 'abandoned' me, I miss them so much it physically hurts.

One friend just dumped me on the spot, because I was apparently sending her suicidal messages in the middle of the night ( off my head on morphine in the hospital) and she thought I was dramatizing and really not ill at all. She had the audacity to contact Sleezeball to ask him how ill I really was!!! She and I had always been turbulent; it feels permanent this time. I miss her, but then again, if that was how she felt, so be it. I hope she is ok.

One other 'close' friend - and these two were close, close friends as I thought - decided that I was far too needy, and that friendship should be free of any demand or obligation to help. She lectured me; she bitched at me; she slagged me off; she left me. I've written about her on here. I don't miss her, really. She is hard as nails, and not in a good way. Her view that you don't help your friends when they are down and out is very strange, cold and incomprehensible to me. I was very angry with her after everything I'd been through with her. But friendship isn't like that - it's not a 'deal'. You did that for me, so I'll do that for you. It doesn't work that way. It has to be willing, and she wasn't. I hope one day I will be able to wish her well.

And then some people just distanced themselves.... Rang less, emailed less.... They're still around, but not like in the days when I could sparkle . I don't sparkle anymore.

Some other friends and acquaintances, some of whom I really liked, I had made through a women's group. Sadly I had to let go of them.... Because one of them was totally horrible to me, and I couldn't work out the loyalties of the others... And there were some strange, witchy vibes around... I burnt my tarot cards, and I let those women go, in peace.

A few friends, however, have stuck with me like gorgeous beautiful limpets. Like stardust. My little Angel sister, who has stuck by me through thick and thin and made me know I am not alone; and another tough, wonderful, strong friend, who has even come with me to various hospital appointments (we've had our good times in the past, partying hard, and she always, always makes me laugh, even if I'm sobbing)... these two have been just totally amazing during my illness. They will always be there to listen, not judge; they help with the kids; they are practical; they don't pressure me. I love them dearly and I always will. They both have kids and all of them get on with each other, which makes it easier. They are also basically single mums, so they understand, as only single mums can, how hard it is, even if you're not ill.

Two other best friends have serious illnesses themselves which prevent them from helping practically but I know they are always on the end of the phone, and that hasn't changed. I know I will know them all my life, and I bear them no animosity for their absence: it's not their fault, just as my illness is not my fault. It's just how it is: we can't support each other much.

My lovely godmum of Blue Eyed Boy, one of my favourite people in the world, is abroad, having a fine time, living her life; I miss her desperately. Her beautiful sister, PPB's local godmum, is great with my daughter but we don't see her enough; she is so busy.

My siblings are all off doing their own thing - one abroad, two in London - and yes, I see them when they're back, but it's not regular. I miss them all a lot. I know they love me and yet I also know how frustrated they are with me. I'm their big sister; this shouldn't be happening to me; this shouldn't be happening to my family. I always feel there is some blame around, even if it's only in my head.

Other old friendships remain unaffected by my 18 months of ill health. There are some people I haven't seen for years but can text out of the blue and it's wonderful; if they turned up to visit, I'd love it.

I suppose it was the friendships that were very close at the time, the two in particular which happened so suddenly, which really hurt the most.

Illness really does put things into perspective and really does show you who is with you for the long haul and  who isn't.

And you couldn't predict it. If you tried to, now, if you made a list, I promise you that you would be wrong. It is not the people you think who either abandon you or stick by you. It is as much to do with them as with you.

And of course I've had to let go of the man I love, at least for now. That has been the hardest thing of all, perhaps. And yet it is right, for a myriad of reasons. But he is with me in my heart 24/7. That will never change, even beyond the grave. No abandonment there; just the harsh realities of life, my illness, his problems. I miss him like mad.

The one person I've wanted the most through all of this , my dear Granny, has been dead for over 5 years. I realise she was, perhaps, my very best friend, and I shall not look upon her like again. I hope she is watching over me, rooting for me still; but god do I miss her.

I try to practice gratitude for the people who have stuck around and I try not to resent the people who haven't and I just wish good things for the people who can't be with me for whatever reason.

How does the saying go: some people are with you for a season, some for a reason, and some for a lifetime?

I couldn't agree more.

how bad can it get: if you're squeamish, don't read this post

so it's a week on, and what a week....

Wednesday, Thursday and Friday I managed ok, until Friday evening I suddenly had a ferocious upset stomach with violent diareahha, which lasted all through the night, then on Saturday an episode of rectal bleeding, which can be anything, ranging from the mild to the fatal, but can also be a side effect of Elmiron. I then had a weekend of panic / pain / tears, punctuated by visits from various doctors and family members; the children went to stay with their grandparents, which was fine at that point as plenty of family around; and so on I went. They put a lot of pressure on me to be admitted as an inpatient to the hospital, but I resisted. There are no clean toilets in that hospital, and most of the nurses are total bitches.

On Monday I got in touch with my own doctor and consultant, to be advised to lie low, stop the Elmiron, do a stool sample, and let things settle down.

Yesterday, I went to do the stool sample and there was some more blood. However, after a second panic attack, I then realised my period had also at long last (after more than 2 months) started, so this second bleed may well have been menstrual not rectal. Impossible to know. I did two stool samples, which have been sent off for analysis.

I am also being referred urgently to Gastroenterology, which will mean, on top of everything else, tubes up my bottom and down my throat to see what could have caused the bleeding. I mean, in my mind it must have been the Elmiron, but the doctors say there is just no way of knowing without looking.

I am finding it very hard to stay positive.

I am crying all the time.

Blue Eyed Boy too homesick so has come back home to sleep nights; my lovely PPB being helpful and staying with my Very Welsh Mother, who has gone completely mad in the past two days and every time she sees me, shouts at me that it is my fault I am ill (go figure) and that I should 'fuck off'. I was so worried about her yesterday that one of my bestest friends, I can't think of a name that sums up how helpful and lovely she has been to me since I got ill eighteen months ago: my little Angel sister perhaps? Anyway she came round and cooked dinner for all the kids and for me, to give my mum a break. There was still a big drama afterwards, with PPB wanting to come home and lots of vicious texts.

All the stress only makes me feel worse.

Right now, my stomach pain is severe, but the bleeding rectally has stopped, and I am glad to have a period. I shall just have to take each day as it comes and follow doctors orders.

Regards the IC, I've found a very good private doc who is pioneering research into cystitis which will not go away, and she is going to test my urine in thorough methods not used by the NHS (in a few weeks, once stomach bug and Elmiron have cleared my system) then come up with a course of treatment. We had a phone consultation yesterday. She is clearly an expert. She does use long term a/bs, though, which I worry about in terms of gut flora / thrush. But lets see what she comes up with first. At least she seems to know what she is doing, which is more than the Big Cheese, bless him, my smiling Cheshire cat consultant, seems to know ('we don't understand IC, sorry' being his favourite catchphrase - one wonders if this would be the same if it was an illness affecting 90% men).

So that's where I'm at.

Taking Diazepam every time I feel like I'm going to fall off the edge of the world; resting a lot; trying not to panic. Not crying in front of the children.

Thankful for the help of my mother , whatever price it comes at, and my best friends who are being AMAZING - my two closest single mum friends, you know who you are, I could not be surviving this without your practical and emotional support. I love you both dearly.

I love many people who aren't here, either . Some are abroad; some have left my life for good; some temporarily. Some only exist now in my memory. But I love them still. And you know who you are, too.

Elmiron: day 26

So I have been on the Elmiron for almost a month now, and no noticeable improvement in my pain, frequency, urgency or how many times I have to get up in the night for the lavatory...

I am persevering with it because it has to be worth it, after everything I went through to get it. But it is draining the life out of me; a bit like Frodo wearing the ring; it feels like inhabiting a shadow land.

But all the while I'm thinking if there is a chance, just a chance, that this medication can help my bladder, then I'm in.

In the two big clinical trials, 38% of women noticed a discernible improvement around the 3 month mark, as opposed to around 16% on the placebo drug. This was what I based my decision to take it on.

I am sick to my stomach; sometimes I just want to eat and eat, other times I cannot eat a thing. My hair is thinning, though I am managing to disguise that. I am exhausted to the very core of my bones; some days, like today, I cannot leave the house. Tomorrow I have to do the school run in the morning as I have promised my son, so cannot ask anyone else, plus I have blood tests and a plan to have a cuppa with one of my best friends at her house. So I will have to drag myself around. The next day, I see my gynaecologist. Because my periods have stopped.

My body is no longer working. I am coming to accept that and yet I rage and rage against it in my mind, hence this next round of tests to search and search for some lurking guilty bacteria, hiding deep inside the lining of my bladder, who is responsible for this and who we can gun down with our machine guns. But I know in my heart that I may have to accept that there is no answer, and this is just my life now. And not everything is lost; but my health was the most precious thing I had, and I didn't even realise it.

I miss being well. I miss just running around with the kids; not having to time my trips to town or my trips anywhere according to proximity to a toilet. I miss being free from pain. I miss the luxury of feeling my emotions, just my emotions, without my physical body dominating.

I don't know where all this is going to end, and that uncertainty, which should perhaps give me hope, scares me most of all.