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.