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.

england is sinking

... so I woke up this morning to hear Michael Eavis talking on the radio about how perhaps the west country farmland should just be abandoned to become swampland and left to the birds and the clouds and the crocodiles.. or maybe not crocodiles... though they have been around since dinosaurs, haven't they? I'm sure they'll outlive us this time, too...

At first I thought it was some kind of joke. And then I heard the weather forecast. There are areas of the s/w of England that have been underwater for over a month. Several villages which have become islands. One village which is totally cut off, accessible only by a makeshift boat crewed by some very hardy but increasingly pissed-off residents.

The government were going to declare it a state of emergency, then decided they wouldn't, because it's only Somerset... then decided something had better be done, so are sending some army troops down there. What precisely the army is going to do remains to be seen. More heavy rain forecast for the weekend... I'm glad I live on a (very steep and rather high) hill.

on a slightly brighter note...

My darling Pre-Pubescent beauty of a daughter, who continues to amaze and confuse me in equal measure, who lights up my life every time the darkness really descends, has got into her first choice school for next year. I am so happy about this; we all are.

Whatever happens to me, I know now that she will be ok. Or at least, that it is much less likely that she will join a gang and be pregnant at 15. No, she is going to have a brilliant start in life; an environment that is stimulating and safe at the same time; so many advantages. She will not be like me aged 13. She will not fuck up the way I did. And even if she does, there will be an army of people to pick her up. I'm not on my own anymore, even though her father is off on a beach in Thailand with his latest 'broody' girlfriend, even if something happened to my parents. PPB now has a huge, soft trampoline on which to bounce off from; not only bounce ... she can fly.

Our option two and three for schools were frankly not wonderful, so this result is just such a relief.

It is the first good thing that has happened to us since my little nephew was born.

It is a wonderful school - the right balance of academic and pastoral - they want you to do well, but also, more importantly, they want you to be happy and fulfilled - and I am so proud of her for all the hard work she put in to get there. She's even been awarded a scholarship for particular talent in an artistic subject area; that part doesn't surprise me one bit considering how talented she is and how hard she works. I'm glad she doesn't know I'm writing all this, or she'd be blushing; but she is, she's amazing.

And my Blue Eyed Boy, who holds my hand through these winter days, is loving piano and cricket in equal measure, and has just been moved into the top groups for Maths and Literacy at school, which is fab too. He has also just learnt to play monopoly, which he is delighted with and wants to do all the time. He reminds me so much of both my little brothers; particularly the one who has ended up really rich, which bodes well for my latter years (bladder bag or no bladder bag, BEB will look after me I'm sure).

I am constantly flabbergasted, proud and consoled by the pure survival instinct of my children. They are both little toughies; hardcore survivors. I suppose they have had to be. And that thought makes me a bit sad. But it shouldn't. Illness doesn't equate with blame. And considering all that is going on, they are doing just fine.

Some people say it's not healthy to live for your children; I would dispute that. Without them it is quite evident to me that I would not be here by now; they are my reason for carrying on. I think living through your children, expecting them to make up for your inadequacies, do the things you didn't do, travel down the paths you didn't take, or perhaps exactly the paths you did take and are prescriptive about... all of that is deeply unhealthy.

But for my children ? Right now, that's all it's for.

fair weather friends are no friends at all

oh and to those of you who have abandoned me, either suddenly or gradually, and decided I am 'too much hassle' because I am too depressing/melodramatic/boring/pathetic... but still sneakily read my blog... the ones who were there when I smiled, and partied, and went over the top, and made life exciting... the ones I needed when my health vanished but somehow you vanished too... you know who you are and how sad you are.

I would just like to say thank you, sincerely, because I do not want shits like you in my life now or ever, and neither do my children.

I wouldn't speak to you again if hell froze over.

So if /when I ever recover, don't ever bother darkening my door. I won't be opening it. I have learnt to survive without hypocrites in my life.

It is the middle of the night.

I cannot sleep.

In six hours I get up with the children.

This is becoming a pattern.

I sit, watch TV, try to eat; come to bed; wash; try to read; end up on computer reading about more and more theories surrounding IC.

Lately I think there must, must, must be some occult/lurking/hiding bacteria in my bladder causing these terrible symptoms, particularly due to the way the whole thing started, with cryptosporidium and with ecoli found initially.

I talk to people on forums; I research doctors and ways of culturing bacteria; I know far more than my own GP now, and perhaps more than my own consultant urologist.

This probably is dangerous.

It seems to me tonight that I shall need to travel to Staffordshire, to visit a Dr there who does something called 'Broth culture', searching for fastidious organisms. It is quite possible that the good old NHS have simply failed to culture what is there; that the bugs have hidden themselves in the lining and muscle of my bladder; and it will take a fine tooth comb to find them , metaphorically speaking that is...

Meanwhile I continue the Elmiron poison. Day whatever. Week 3. I feel like a ghost of myself. But I make myself get through the days, go through the motions, eat, be with the children, give out what I can to my few friends who do seem to be needing me still.... I miss those people whom this illness has removed from my life by whatever means. I miss them so much. But most of all, I miss my health. I am too young for this. I am not ready to be told that my bladder may eventually have to be removed as it will shrink and be covered with scar tissue. I am not ready to consider a 'bladder pacemaker'. These things were raised last week at the hospital. I have to believe there is an answer; we just haven't found it yet.

However much I might wish that I didn't have to fight this fight anymore, I'm not ready to give in.