loss

I haven't been on here for a while, in case you've missed me.

I've been in disabling pain, hardly able to carry on 'normal life'. The IC is so bad, it's frightening. Every day is dominated by my bladder. My 'soulmate' has been helping me with practical things when around, which has been more often lately, but lying to me about various things and god knows what else that I don't know about, so I have been in turmoil inside myself, desperate not to lose him, needing his help, unable to manage alone, yet conscious that something is very wrong. I will always love him but I cannot live surrounded by lies. And all the time my bladder is SCREAMING. I am at breaking point.

I am just checking in; will write when the words will come.

how much support do you really get in a support forum?

I go on various Interstitial Cystitis Support Forums, under different names, for support. I 'listen', by reading, and I empathise, and I console if appropriate; I ask advice on specific issues, or I just have a moan.

Last week, someone went too far with me. I was talking about my ongoing and frustrating battle for Elmiron, and she was being too intrusive and saying how easy it was to get it in the country she lives in, oh and had I thought of writing a letter?

Maybe I was a bit short with her. It had been a long day. I said good for you; and yes I've thought of writing letters.

She accused me of snideness, sarcasm and 'abuse'.

As far as I know the forum involved have not banned her; perhaps she's had a warning, I'm not sure. I certainly reported it.

We are both suffering from the same thing; perhaps we both were oversensitive; perhaps we were both out of line.

But the personal words she hit me with went beyond anything I would dream of saying in a public forum. I was shocked.

And I wondered: are we all 'in it together'? I've never actually met, in person, anyone else with confirmed IC. All the 'togetherness' is online. And there are weirdos online, just like in real life. There are nasty people everywhere out there, healthy or ill. Just because we all have IC doesn't mean we're suddenly best buddies. It's a bit like the enforced jolliness of the school gate: a bit fake.

only I could plan the quietest birthday and end up on the floor

So after the mayhem that was this time last year ( a dinner with six friends which ended with a club with two friends, I won't go into details but they took my phone off me to stop me from calling my ex and somehow I decided to stumble home at 3am up all the hills I could find, not just my own; ended up sobbing on sofa with the dishwasher man as audience on Nov 2, reaching a new rock bottom) , I decided to have a quiet birthday this year. No alcohol, no late nights, no melodramas. What could go wrong?

So here was the plan: A beautiful family birthday morning with my nearest and dearest. Breakfast in bed which my kids were determined to make. Meet with a few friends for brunch at one of my favourite cafes; a few hours at the Spa with a couple of best friends; birthday tea with friends and family. Then after settling children, another good friend coming over in the evening for a movie/pizza/relax. Calm, lovely day.

As I say, what could go wrong?

The day started well. Everything was good until we reached the steam rooms of the Spa. And then what could go wrong? Fentanyl, in a word.

I have gone back to wearing pain patches for my IC; as the morning pain became so unbearable again the GP and I decided that it was worth going back to a patch for a while, despite the fact they make my skin so itchy and make my ability to regulate hot and cold difficult , so I'm either boiling or freezing. But the agonising morning pain less debilitating so it's easier to look after the children.

So, we did this a week ago. And it's not as if I forgot; some lady in the spa even pointed it out to me 'do you realise you have a plaster on your shoulder?' (!!!) , but I forgot you are not meant to overheat in them i.e. steam rooms. It happened to me before in the summer, at a rollerblading party, where I got so hot the patch slid off, I put a new one on, and promptly o/d so badly I vomitted. So you'd have thought I'd have known. But I was just so excited. It was my birthday; we were at the spa; everything was lovely.

I just didn't think.

After the steam rooms, I started to zone out a bit. My friends were talking and I wanted to join in but wasn't sure which bloke was which, who they were discussing, didn't want to say the wrong thing; knew I would.

Went to changing rooms and lost ten minutes just sitting on floor with room spinning. Dried my hair then asked an assistant for help so we didn't get overcharged. They were lovely; brought me water and sweet tea. And my friends were pretty lovely too.

We got to my parents, where the children had helped to make a lovely birthday tea; I got through it, opened the presents, but it was as if they were all staring at me waiting for me to collapse. I clearly didn't look 'normal'.

Didn't have to drive home as Mum drove me. Then it was just me and the children. At some point my legs gave way. My ten year old was scared, I convinced her not to call 999 but just to call my parents, who did come but were angry (their stock position when faced with emotional difficulty) and mum said 'is this to do with the heroin patch on your arm'. And my father upset my son; calling him 'brainless' outside of his room, within his earshot, because he wouldn't obey orders. He was upset! It was his mum's birthday!

My friend turned up in the evening; she's amazing, but was out of her depth - is younger than me and hasn't seen this before. She didn't quite know what to do and we ended up with my fella, who would have been the best person in the world to have there, talking her through it. I'd taken some valium to get me through the birthday tea, so they were worried I would properly o/d. I knew I wouldn't, as soon as I started eating chocolate I felt better, but my friend said ' you can't even feed yourself', which stuck in my head - was she judging me? I felt the judgement, even if it was just in my head. I don't know what she really thought. Was this my fault?

It wasn't, it wasn't my fault. These things chase me, haunt me.

Next birthday I will do NOTHING. I will stay in bed all day, play board games with my kids. I won't venture out of the house and if I'm still on these stupid drugs for IC, I will make sure I don't get carried away with something approaching happiness and keep my mind firmly on the job.

So, another year passed.

Then the next night neither of my close friends who'd been at the spa with me could/would come to the fireworks with us at the Rec; so I ended up feeling very alone.

Something I feel a lot, these days.