waking in tears: total antibiotic despair

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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