Introducing my fucked up bladder and Mr Sleezeball

so why now, after a thirteen hour day non-stop looking after the kids, thinking about their needs,going at their speed, taking them from park to tennis lessons to my doctor's appointment ('I won't be in there long, see what you can build with these cool brick things by the time I come out') to library to my stoic half-blind Grandpa's, where I care for his needs too, thinking about all their needs, running on empty, trying to hide when I need the toilet ten minutes after I've just gone because I don't want my kids' lives to be dominated by my inflamed and angry bladder, trying to hide when I am in such pain I just want to double over and cry because I just cannot see the look of pity and disappointment on my children's faces when they should be having a lovely day.....

why now, after hours and hours on the move when I have succeeded in giving those I'm responsible for a 'good' day, when I want to be still, do I want to write this? 

Usually I just watch TV.

It's partly that I've given up alcohol and caffeine as part of my bladder-friendly diet, so I feel much more clear.

Maybe it's helping a bit; maybe it just isn't hindering. They are good things to give up, anyway; being as addictive a character as I am, and on so many different narcotic painkillers and other hardcore prescription drugs that it would take a saint to not become addicted to, it seems stupid and foolhardy to be hooked on more things than I have to be right now. Plus, when I drink wine or coffee, it physically hurts inside my bladder, so I can't justify it.

It's partly that I am so depressed and low that I just need to get it out somehow.

But that in itself is strange, because although I define myself as a writer, I used to write for a living, I did an English degree, I wrote diaries avidly ever since I could write, despite all of this - I have not written anything more than a text or an email for a very long time. Several years. And for much of this time life has been wrong; or let me put that the other way around - only for a few brief moments or phases of my life has my life been really good. Mostly it is either bearable, but fairly bad; or really bad, virtually unbearable. So it's not like things are suddenly bad now, and that has led me to want to write. Things are usually bad, and usually now I do not write.

Because chronic illness is so isolating, I want to talk about it, but I find it very difficult to talk to my friends and family about any of it, and I find it so fucking depressing ringing the Samaritans (why can't they give you proper advice when you need it? I always ask them for it, just to test if they're playing by the rule book. They always do. They never offer you an opinion. They only listen. I'm not knocking it. Like Alcoholics Anonymous, another organisation I have had reason to make use of in the past, it is fantastic that they exist at all. I just wish that sometimes you could have more of a laugh with them).

So - no late night phone calls to the Samaritans. No late night phone calls to my friends. No phone. Really not liking the phone at all. I start sobbing, and then what?

Ok. Here's the thing. I have been ill for eleven months. Solid. And when I say ill, I am talking properly ill. I've always been a hypochondriac and a drama queen, so I'm fairly sure that at least half of my circle of friends and acquaintances think that I make it out to be worse than it is, but I really don't. And I really don't feel like going into all the minute detail right now - maybe I will in another post soon - but here's some of it at least.

Introducing Mr Sleezeball. You'll hear a lot about him, as I'm still 'processing' it (I always wonder exactly what that means, as we're not made of cheese, but that's what I'm doing). So I broke up with Mr Sleezeball last autumn, after almost a year of candy-floss castles in the sky, mediocre sex (on my part; on his part it was the best he ever had, which I find gratifying and yet so depressing for him) and pseudo hippy bullshit about love meaning letting go (much, much more about him and all of that later on), having caught a nasty parasite from his canal boat, or the water surrounding it, and I got really sick.

Having been a vegan last summer anyway, I quickly lost 2 stone in weight, I was bleeding from my arse, I was put in isolation in hospital, my stomach was inflamed with 'snakeskin gastritis'.... I could feel the tentacles of blackness reaching up to engulf me..... It would take me three hours to eat a banana. It would take me ten weeks before I was remotely back in the real world.

Then quite suddenly, when I started to heal from the acute illness and the sudden break-up (he left me, because it was all too difficult and because he had never really loved me in the first place, and it stopped being fun, and he is no kind of gentleman who would not leave a lady in distress), suddenly these severe bladder symptoms started. Somehow the inflammation had spread from my stomach and bowel to my bladder, and it was here to stay.

If you're female, and I say to you cystitis, or a urinary tract infection, there's a good chance you'll know what I mean. And perhaps if you're male, and have any trouble with your prostate. Well, I've had UTIs in the past, and that's what I assumed this was. So I took an antibiotic, but it didn't go away. Well, my immune system was down, no big deal, everyone kept assuring me, so I was given another antibiotic, and another , and another.... This went on for months. No change. Constant agony; a feeling of burning deep inside me; constant feeling of needing to wee even when I just had; I may as well have been living in the bathroom. On a bad day, these days, it is this bad. On a good day, some of the pain and desperation is masked by various medications. But it is always, always there. It never has gone, except for when I'm asleep or sometimes in the bath or occasionally on the sofa with a hot water bottle on my tummy and something engrossing on TV; it has never gone since the day the symptoms appeared, nine months ago.

I was referred to a urologist who eventually did a cystoscopy and diagnosed me with 'Interstitial Cystitis'. What this means is frequency, urgency, and bladder pain. What this means is antihistamine drugs, nerve blocking drugs, morphine based painkilling drugs, blank stares, exhaustion, isolation, crippling discomfort, stopping the car in a traffic jam to run out to find a toilet because I just cannot wait, drugs, drugs, a consultant who freely admits he does not understand what he is dealing with .....

What this means is I am my own doctor, I am my own advocate, I am my own best friend. I am fighting at the moment for the right to take an expensive drug, the only one licensed by the FDA for Interstitial Cystitis, called Elmiron, which is given as standard in the USA but not over here, mostly because of cost. It can have hideous side effects, such as hair loss in patches, and yet I am campaigning to be able to take it, because I am desperate. The next thing after the oral drugs are the catheter treatments - weekly in the hospital - which I cannot yet face physically or emotionally.

And I am still a single mum, of two small children, and I am still their rock, their home, their safety. I am stretched so thinly I fear I will snap.

And yet I look 'well' now. 'How well you're looking!' people exclaim, ignorant of the fact that I want to punch them in the face for their lack of sensitivity. And yet how should they know? It's an invisible disease. Nobody can see the inflammation and the allergic cells in my bladder. I look ok. Most of the weight has come back and my smile has come back and I try and I try and I go through every day just getting through what needs to be done and I find I can just about look after myself and my children, and our household, our food, clothes, shelter, laundry, shopping,...

I can just about cope, but there is nothing else left. I cannot sustain any kind of proper relationship and I cannot even contemplate 'working' (as if being a full time mum isn't working!!!).

I am exhausted, completely exhausted. I am in my own personal hell (I'm going through hell, I tell myself, so just keep going).

I collapse into bed at the end of each day and I have to drag myself out of it in the morning. I try so hard not to wish that I just didn't wake up at all.