Sunday, 30 June 2013

You broke my brain

If I could see you for just five minutes. If I could hug you and remember what you smell like and exactly what your voice sounds like. If I could just have you back to talk to, to get your advice, to get your support. If that could happen, I feel like I'd be able to breathe properly. For the first time in 13 years.

I can talk about you without crying now, but only if I skirt around it in my head. Luckily, I spose, I don't really talk about you often. I'd like to but I know that people feel uncomfortable when I do. What can anyone say anyway? I want to be around people who knew you so that they can understand what you meant to me. I want to take the memories from everyone who did meet you and keep them for myself, so I can get more memory playback in my head.

It's not even like I think about you every minute of every day; it's more like the thought of you is just part of me now. You're always in the background. You flit through my mind constantly through the day. When I hear someone say something that I know that you and I would find hilarious I remember how we would only have to look at each other to know exactly what the other is thinking. And usually it was something snarky and amusing only to ourselves.

I think about you every time I make a decision to do with a job or a place to live or what the hell I should do with my life. I don't know if you dying when you did has contributed to my inability to stick in one place and do one thing for a long time. I can't settle. I don't feel like I've been able to settle ever. And when you died and shattered the whole world, I felt like the sharpness of everything increased for a time. I could see more clearly and I knew that nothing mattered anymore.

And now, 13 years on, I don't seem to be able to commit to even the idea of a relationship or a long term office job, I don't seem to be able to ever imagine myself not feeling hemmed in and restless and claustrophobic. And it doesn't matter where I travel to or where I live, that sense of restlessness won't go away. And I think it's because there is something so fundamentally missing from my life and it was torn away too abruptly. I feel like my brain schismed that day and, although it's fused back together, it's disjointed somehow. You broke my brain, man.

So I'm sort of in limbo, waiting for you to come back I think. I sort of feel like I haven't been able to breathe properly since the day you died. I feel like Poppy looked when she went round the house looking for you for a few weeks after you were cremated. I feel like I'll never stop looking for you round every corner, or in every branch of WH Smith or HMV - we must have gone to those shops a lot because I still find myself expecting to see you having a sneaky read in the magazine section like we used to.

I still feel like you'll call me one day and it will all be some, weird Reggie Perrin mistake and then you'll be back home with mum. How it should be. How it always should be.

I don't really know what to do without you dad. I am trying though. I promise.

Saturday, 29 June 2013

Won't to mete up

Meet Loyd

He sent me multiple messages that I responded to negatively (only when they became incessant). I asked him to leave me alone.

Then he sent this:

I admit. I was mean. But I sort of wanted to know.

I'm also not sure what dog fishing is, exactly. He fishes for dogs? He takes his dog fishing? He's a mystery wrapped in a conundrum wrapped in an enigma is Loyd.

Brain drain

I’m quite interested in the sensations that are occurring in my brain at the moment. I feel completely and thoroughly overwhelmed. Like my sponge brain has absorbed as much as it can and is now off in a corner singing to itself and dribbling.

I can’t work out anymore whether I’ve taken too much on and therefore this state of being is my fault... or whether the fates have conspired to make things overwhelming.  

Between working around 60 hours a week, fronting up to the NHS, volunteering at various establishments around York, trying to have some semblance of social life (I have actually been in a public house this week, albeit to organise a work-related event, but I was still In A Pub with other people. I mostly talked about work, but y’know, you have to start somewhere), and now trying to get my case taken on by a private endometrial specialist I am actually completely finished mentally.

I was on the phone just now to Nuffield Health, the private hospitals to try and work out who I should see, where and when. It’s proving almost as tricky as communicating with the NHS. I thought that if you were willing to hand over cash then things changed. But apparently the Leeds Nuffield only has one member of staff dealing with appointments and he’s ‘not answering the phone at the moment’.


So, in a nutty fucking nutshell I have got to formulate a formal complaint against the NHS consultant who has admitted that she ‘made assumptions about my condition’ and ‘thought that it was most likely the case that your symptoms are like this’, when actually the symptoms she was talking about are things that I have never had and certainly never spoken to her about. This is the woman who has opened me up, by the way. Bear in mind that I have let this lunatic dig around inside me with knives. She told me that she didn’t perform the ablation that I was expecting because, and yes, I’m quoting: “I didn’t have time” and - wait for this one: “I didn’t have the tools I needed in surgery anyway”.

You... didn’t... have... the TOOLS? When you were going into someone’s womb to look at their endometriosis that you already knew they had, you just didn’t bother getting the right tools ready? ARE YOU EVEN A FUCKING DOCTOR?

In the meantime I’m trying to find five minutes a week to write my book - which is obviously the thing that I actually want to do - but is proving continually knocked down my list of priorities which apparently remain as work, work, work, pass out, work, work, work, cry, work, cry, pass out, work.

And yes I KNOW people have it harder. I know that. And my work at least doesn’t involve going down the mines or cleaning chimneys but it does involve writing around 4,000 words a day, for which I need brain cells that can actually think straight.

I just sat down and cried on the phone to the Nuffield Hospital person who told me that Leeds Hospital guy isn’t answering the phone. She was nice to me. And that made me cry a bit harder. Last night an advert for dog food came on and I cried at that. An old university friend announced his engagement on Facebook and I cried at that. He looks so happy. And that’s so nice. And the fact that nice and good and happy things are going on for people I know, even from years ago, is lovely.

Legit reasons to cry maybe. But I also just cried because I dropped my phone and the battery fell out. So I think what I might be is thoroughly overwhelmed. And because the bus was late. And because I couldn't find my cigarettes.

I think my brain has rebelled and turned me into a gibbering wreck.


Thursday, 27 June 2013

Just give me the words

Quite an experience to live in fear isn’t it? That’s what it means to be a slave...

All those moments will be lost in time. Like tears in rain. Time to die.

This is how I feel right now. About life, about death, about everything. I can’t even put into words how exactly this encapsulates the futility and anger and sadness and grief and hope that makes up the human condition. But it does. And if you don’t feel something profound and deep within you when watching this then you’re most likely dead inside.

This is why words, writing and art mean something to me. They make me feel something bigger than myself. They give me perspective and they give me hope. Just words put in the right order can do more for me than any amount of positive thinking self help therapy based bullshit.

I’m going to spend any spare time I have over the next few weeks watching films that make me feel like this, reading books that make me feel like this and writing words that make me feel like this.

Because fuck this shit of drowning in the morass of bureaucratic shite that I’m dealing with. Fuck waiting for people to help me. Fuck hospitals, operations and ovaries. Fuck money and lack of it. Fuck working stupid hours. Fuck it all. I need some succour. And, as usual, it’s words that will give that to me.

Wednesday, 19 June 2013

Art is not what you see, but what you make others see

I have a friend, Annabel Rainbow, who is a phenomenally talented artist. She does quilting and painting and is more prolific than anyone I have ever met, turning out pieces of work that are in turn powerful, beautiful and thought provoking.

For her latest piece - Life 9: Not Fighting Back-  she asked me to write some words about depression. She needed a rant about how it can feel when trapped in the depths of it. You can read what I came up with on Annabel's blog here:

It is how I have felt while in a bad patch. It is not how I feel every day, all the time. It is not about whether it's right or wrong to feel these things, it's just a gut reaction to how I feel when I am struggling with depression.

It will be stitched onto the body of the fighting woman in the piece and I am really proud to have been asked by Annabel and have my words on one of her pieces. Check out her stuff, it's amazing.

Oh and the quote titling this is from Degas. Wise man, he was.

Monday, 17 June 2013

The death of the NHS

Google 'let down by the NHS' and you'll be appalled.

Go on. Do it.

You'll see stories of people who died from dehydration, case after case of old people, people with special needs, people with limited understanding and all the other kinds of vulnerable people there are being let down by the NHS.

And, often, let down means 'left to die'.

It goes on and on.

Gay people, bisexual people, mums, kids, the elderly... example after example of the neglect people are enduring as a matter of course. People are slipping through the cracks, going unnoticed, dying in hospital for want of a replacement drip. It's difficult not to feel that people's health is no longer the priority for our National Health Service.

I'm currently fighting my own battle - one that gets progressively more ridiculous as the weeks pass by. Today I went to my GP to discuss my 'options' only to read my consultant's letter. You know, the one that summed up the state of affairs after my botched operation a few weeks ago? The letter shows an appalling lack of interest in my case. She has managed to get the date of my previous operation wrong, my secondary condition wrong and has contradicted her own discharge notes (that she wrote with her own hand before I left hospital) on multiple occasions. She says that I said my pain had diminished prior to surgery. That actually is the diametric OPPOSITE of what I said. My pain has very much not diminished. She said that I was 'exhausted for two weeks prior to the op'. Try 12 MONTHS, you batty old bitch.

She either hasn't listened, hasn't heard, hasn't consulted my files or she's entirely fucking mental. She initially refused to see me until mid-August until, as she puts it in this letter, 'the patient is managing their condition  better'.

Um, what?

My GP said that 'consultants are often very busy and have a lot of patients to see and this is probably why the letter doesn't correspond exactly with what you think was said.'

Yeah, that'll be it. Clearly. I'm sure it'll be my fault somewhere along the line.

"I'm going to lodge a formal complaint. This treatment is appalling. Absolutely appalling."

This sentence seemed to galvanise some action.

The GP asked me to give her a week to get an earlier appointment with mad consultant. At which point I can, apparently, ask that she transfers my case to another consultant. I reluctantly agree. It's worth noting that I have phoned the consultant three times already to try and get an earlier appointment, only to be soundly denied (through her secretary - she didn't want the bother of actually speaking to me).

I left the GP's office in tears. Again. Tears of frustration and tears of fear that I will get no relief from this condition.

I have just received a phone call from my GP. Magically the consultant has shifted my appointment forward by two months. Instead of waiting till mid-August, I'm now seeing the consultant next Tuesday.

How appropriate. See you next Tuesday indeed.

And yes, I do bang on about this, I know.

But it's becoming a much wider reaching worry of mine. I am absolutely appalled at my treatment for my own sake. Of course I am. Who wouldn't be? No one wants to live with a chronic, debilitating, embarrassing condition that severely affects their life.

But how much worse would this be if I wasn't able to fight my corner? What if I was completely alone? Frail? Vulnerable? Had learning difficulties? Elderly and confused? Or otherwise unable to invest my time, emotional energy and not inconsiderable amount of experience with the NHS to further my cause? Because I'm already exhausted from working two jobs and trying to deal with the pain and symptoms on a daily basis. The last thing I need is to have to take on the NHS in some big old battle to actually receive any treatment. But I will.

But what if I couldn't?

If it's this difficult to get treatment for a common, already diagnosed (on multiple occasions now) condition, how much worse it must be for those with a condition that doesn't tick any easy boxes or fit into convenient half hour surgery time slots? Or someone who has no experience of the system at all and accepts the first diagnosis they may get, even if it's clearly negating their plight?

I'm lucky. I have support and advice and, if push comes to shove, I will find the money to go private. A lot of other people aren't so lucky. And it is really, really disturbing.

Sunday, 16 June 2013

"If Deborah roused herself...

"If Deborah roused herself, or could acquire some enthusiasm or self belief, then she could do well. Instead she has shown little interest or motivation. Disappointing."

Well, fuck you Mr Keer, so-called Head of Art at Arden School circa 1991.

Old school reports are ace, aren't they? Sobering reading in my case. I had a vague idea I was effortlessly successful at school, but it turns out that I was barely average and just good at pulling my shit together at the last possible minute.

"Deborah allows herself to be too easily distracted," says my old German teacher.

"Satisfactory," says Science.

What do you mean, satisfactory? I am a special snowflake and not at all average in most things except English. You bastards.

I was clearly too much of a genius for them to recognise. Probably just intimidated them with my vastly superior analytical skills and intellect. I was pretty sure I knew everything at 15, and nothing they said made any kind of difference. Ah, the misplaced arrogance of youth. I know far less now than I did at 15, and understand even less than that, particularly about people and their actions. I lived my life in black and white and now I'm submerged in so many shades of grey I can barely tell who the good guys are.

It was when I was 15 that my career as a reprobate began. A pretty mild, middle class reprobate, mind. I seemed to get sent out of class a lot in the final year of school. I vaguely recall it was down to my attitude. I can't imagine what their problem was. I bet I was a delight. I also remember being threatened with suspension for dyeing my hair black and having my earrings confiscated on a daily basis. I know, I can hardly believe the depths of my depravity either.

But then again, as I read Mr Keer's damning words 22 years later it strikes me he had a point. And if an imaginary teacher was writing a report for me right now, they might say something disturbingly similar. Hmmmm.

Friday, 14 June 2013

Cats. Fuck yeah.

Throughout my recent traumas I have, as usual, turned to the internet and its soothing balm of cat pictures and videos to comfort me in my hour of need. 

And in my quest to be soothed by cats I found many pictures that pleased me. These are pictures of people I find cool and/or sexy and/or funny and/or intelligent and/or unfathomably ace. With cats. 

I have decided to share them with you here. 

MARLON BRANDO.  No people skills, plenty of cat skills. My hero. 

DOLORES DEL RIO. Mexican film actress, star of Hollywood films in the 20s and 30s. Never seen her films. Bloody love this picture. Boss eyed cat just adds to the appeal. 

BETTE DAVIES. Played mean characters. Loved cats. Love her. 

MARLON BRANDO. Yes, again. Here he is again. Writing on a typewriter, probably so he doesn't actually have to speak to people. Sensible man. Cat round his neck. Hot. 

CHRISTINA RICCI. She'll always be a goth to me. Good actress, good parts, good face. Good cat. 

RUSSELL BRAND. Intelligent, erudite, strong willed, kind, Buddhist, sexy, fit, yoga, cats. Mine. Be mine. 

BOB DYLAN. Sans cat he is excellent. With cat he is infinitely more excellent. The answer, my friend, is blowing in the wind. And in the cat wind. Wind of cats. 

CLARK GABLE. Frankly, my dear, I don't give a damn. Unless you're a cat. 

LIZ TAYLOR.  Fell in love with cats almost as many times as she fell in love with men. Married fewer cats.

KURT COBAIN. Hero to a generation. Bad dresser. Melancholy, troubled genius. Loved cats. Good man. 

FREDDIE MERCURY. Much missed actual Queen of all things rock. Majestic in spandex. Genius in abundance. With cat.  

EWAN MCGREGOR. Scottish actor of some ability and much sexiness. Adorableness rating exponentially increased by this picture. 

ZACHARY QUINTO. Who doesn't love this guy? What's not to love? Gorgeous, witty, nice, gay, hot, cats, eyes, beard. Woof. 

TINA FEY. I want to be her. I want her cat. 

VIVIEN LEIGH. After all, tomorrow is another day, which I shall fill with cats. Fuck that guy. 

 MARILYN MONROE. Meowrilyn Monroe, more like. 

DAVID BOWIE. Even terribly dressed 80s Bowie is cooler than you'll ever be. Avec chat he explodes off the coolometer. 

KURT COBAIN. He's worth two shots. Look at his smile. No angst there. Should have stuck to
cats, Kurt.

MORRISSEY. Heaven knows he's miserable now but at least he has a cat. And that helps with all things, especially misery. Sort your weird politics out and you'll be grand Mozza. 

OLIVER REED. Hell raiser, actor, raconteur. The man is a bloody legend. And hot, hot, hot back in the day. Helped greatly by eye contact held with this kitty. 

MORGAN FREEMAN. Ask him anything. As long as it's about cats. 

NIC CAGE. Because he has to have something to do in between making really terrible films. Cat wrangler. 

AUDREY HEPBURN. She'll have breakfast at Tiffany's. With the cat. Yes, the cat has to come too. 

Wednesday, 12 June 2013

Meet Andrew...

This is Andrew.

Andrew emailed me on OKC.

Isn't he ADORable?

He takes amateur photographs and doesn't even charge!

I think he's The One.

That's... reassuring?

Half way through the afternoon I get a voicemail from an unknown number. This isn't, in fact, a rare occurrence. So far today I’d already had some random video games recruitment company calling me to ‘have a little catch up’, despite me leaving the industry quite a few years ago now, SKY (or some dodgy fuckers who are pretending they are SKY offering me their internet even though I already have it by default because I signed up with O2. Yeah, I don’t get how that works either), so I wasn't expecting anything very exciting when I listened to my voice mail.

Maybe it’s one of my PPI friends I thought. Maybe it’s that one who called me the other day and in response to my terse: 

“Please remove me from your list, I’m not interested,” responded with:

“What if I was calling to tell you you’ve won the lottery? Eh?”. 

“Well, to be honest,” I said, “I’d be really fucking surprised as I don’t enter lotteries on the basis that I pay enough tax and get fuck all back so why I’d CHOOSE to take part in one I don’t know, and being at the mercy of the NHS is lottery enough thanks. I don’t think I could take the excitement.” He’d gone by then, but I enjoyed it.

Anyway, on listening to the voice mail it turned out to be my GP. My actual GP. I don’t think my GP has ever contacted me off their own back before. Ever. Her message said: “It’s Dr Flumpf. Please call me back”. 

Dr Flumpf is not her real name, obviously. But I need a pseudonym for her and, having worked the last 7 days non-stop, I’m finding my imagination is defunct, my brain is melted and I can’t think of anything other than Flumpf. It’s a pity though, her actual name is rather wondrous but I don’t feel right using it on a blog.

So if your GP calls and asks you to call back, it’s a bit scary. It just is. They generally don’t phone ever. So this must be special, I thought. Half an hour later I finally get through to the surgery. Naturally the receptionist tries to convince me that a) the doctor isn’t actually at the surgery today and b) won’t be available to anyone and then c) oh, she called you? Well did she tell you to call her back? and, finally, d) I’ll get her for you.

That hurdle jumped over I find I’m getting more and more anxious. The doc comes on the line. 

“We’ve had a letter from the consultant.”

“OK, and?”

“I just wanted to let you know that we have had something from them as you were so distressed when I saw you last. I’m not supposed to be working today and I don’t really have time to talk about it but I have had some notes through, but it’s a photocopy of a fax [a fucking WHAT??? What fucking century are the NHS living in??] and I can’t read the handwriting very well. You know how it is.”

“Yes. Yes, I do,” through gritted teeth.

“It looks like they’ve found something but they don’t know what it is. And she wants your bowel to resolve itself before she sees you again.”

“What? What have they found? And why would my bowel just resolve itself? HOW would that even happen? I don't understand. That doesn’t make any sense.”

“I can’t talk to you about it now, I don’t have any time. I just wanted to let you know they have written to us. You will have to come back into the surgery to discuss this.”

“Well, yes. I already have that appointment made to see you next week.”

“We can discuss it then.”

“Should I have a copy of this letter?”

“I have no idea.” [HOW? How can a GP have no idea whether the patient should have copies of the letters about her own treatment? Isn’t there a procedure of some kind? Surely there’s a procedure? She must deal with people who have operations all the time? WHY IS THIS SO DIFFICULT?]

“Er. OK. Thanks for calling [I felt compelled to say that as she had told me three times that she wasn't supposed to be working and she was only calling me to tell me she has received the letter].”

And that was that.

Not really sure what the point of that was or what new information I'm now in possession of. Apparently my consultant has ‘found something but doesn't know what’, and is expecting my bowel problems (that I didn't know I even had until the operation) will spontaneously resolve themselves and then, and ONLY then, will she see me about the endometriosis that we already know I have.

Once again I’m left confused, bemused and feeling like I've missed out somewhere along the line or that I'm just too stupid to fight my way through the morass of non information and doublespeak I just received.  

Did I miss the training in translating NHSisms? 

Am I meant to understand what the fuck is going on?

The worst part of all this is I feel guilty. I feel guilty every time a doctor takes time with me because they make me feel like my illness isn't important, so maybe they're right. I mean, they're the doctors. What do I know? I only know the pain and anxiety and fainting and vomiting and haemorrhaging.

But maybe that's normal?  It’s not even important enough to my consultant to write clearly about to my GP. It’s not important enough to tell me what is wrong with me. It’s not important enough to tell me what I should do next.

I feel like I’m taking up their valuable time for no reason. I have to remind myself that it’s not normal to be this ill, all the time. I am becoming increasingly desperate as I am unable to do anything other than work. I don’t go out, I can’t exercise, I can’t manage to get to classes after work. All I can do is work and stagger home to try and do the freelance that’s keeping my head above water, or collapse.

And that’s no life at all.

Tuesday, 4 June 2013

Communication problems

I have been rather unhappy about the information given to me after my operation last week. Barked at me as it was just after I'd groggily come round from the archaic anesthesia.

I think it was this:

1. You have lots of endo but we didn't ablate and thus actually help you
2. You have a lot of scar tissue and adhesions from past operations (and possibly the endo? I'm unclear on this)
3. Your bowel is fused with something (possibly my womb?)
4. You probably have colitis
5. We will write to your GP within a vague and unspecified timeframe.
6. You won't see me again for two months.

And then she swept away in a cloud of self importance and hairspray.

So that's what I have to go on.

I was so concerned with the lack of ablation that the bowel thing, in all honesty, just confused me. I don't know what I'm meant to DO. No one has TOLD me what to do. I'm not a doctor but I'd say this is pretty necessary from a patient's point of view.

See, from my point of view, I've forced myself to the position where I'm lucky enough to not be cancelled and actually have the operation. And then they didn't help me and I'm now very confused about my diagnosis and what I should do next and I am, frankly, outraged that I don't get to see this woman for another EIGHT WEEKS.

So, yesterday, while trying to penetrate the fug of my brain and accompanying pain, I made some decisions. I found out that a private endometrial ablation will cost me around £5,000 through the Nuffield Hospital. BUPA don't even do it! Marvellous. You can get a nose job no bother, but not gynae stuff. Thanks BUPA. Anyway, that's my last resort for obvious - and skint - reasons.

Then I phoned the secretary of my consultant to demand an earlier appointment. She said that she hasn't had any notes or instructions from the consultant so can't do anything. I said: ask. She said: OK, I'll get back to you in a few days.

Then I went to my GP, not knowing what the hell else to do. She was nice to me but said that she can't do anything at all - not refer me to anyone, not prescribe me anything, nothing - because she hasn't received the notes/instructions of the consultant. I cried. Then I asked how long the notes normally take and she said around two weeks.

I went home and passed out.

Today I am still too ill to work, which is making me horrendously paranoid about my job and stressed that I'm letting people down etc, as well as freaking me out money wise as I have run out of statutory sick pay.

The consultant's secretary just phoned me and said the consultant refuses to see me for two months as 'there is no point until the bowel has been treated (or assessed - she wasn't clear on this)'. I said what are you talking about? I haven't been told to do anything, change anything, try anything to change my symptoms - I haven't been given any treatment or advice - so what does she mean? WHAT treatment is meant to be changing things?

She said that she 'hasn't actually spoken to the consultant because she's too busy - this is just what she emailed'. I said that being told that my bowel is fused to something and that I might have colitis isn't enough information for me to go on right now and can she go back and ask again.

She said it will take another few days.

I think what may have happened is the consultant has written with some information/instruction to my GP, who hasn't yet received it and therefore hasn't informed me? Could that be what's happening? Who knows? Definitely not me, that's for sure.

Kafka says that one of humanity's biggest fears is powerlessness. His book The Trial focuses on a protagonist - K - who is arrested without explanation, tried without explanation and can't get any help or information from anyone. He is never told what he has done and he is never told what will happen to him. He can change nothing and affect nothing. He is killed eventually, never having discovered what the fuck was going on.

I use the term 'Kafkaesque' frequently and facetiously.

This is the first time in my life that I have truly felt its horror.

Sunday, 2 June 2013

A mixed blessing?

I've been back on the joy that is Facebook for a month or two, without serious mental or emotional trauma. It did help when I realised that instead of shutting down my account I could just delete those people who have shown themselves to be turds and scumburglars. So that's what I did. And Facebook is approximately 9.7% more enjoyable as a result.

It felt sort of disloyal to unceremoniously boot former friends off Facebook - it seemed to make the demise of said friendship real. In much the same way, I suppose, that you can't possibly consider yourself either in a relationship or having just finished one unless it says so on Facebook.

But then I thought about how miserable I felt when I saw their smug, disloyal, lying face and I decided that, meh, it's OK actually. And it really is.

Facebook continues to split my brain in half though. As we all know, ad nauseam, I've been ill for a while. And some weeks I'm iller than others. And most weeks I find it very difficult to go out and socialise, due to pain, malaise, exhaustion, haemorraging, that type of thing. So my social life has taken rather a battering. In that, I don't really have one. And I live in fear that the friends I have made up here will eventually cease to invite me anywhere ever as I'm usually such a no show. But at the same time, I can only really make it through work (most of the time) and do what I need to do to clean my house and myself. Socialising just doesn't come into it.

This means I spend an inordinate amount of time on my own. Like, a ridiculous amount of time. Which probably explains the blog, when you think about it. Most people are out there actually having a life. I'm more a life ponderer these days. Always nice to have some time to think isn't it? Not so nice, perhaps, when all you do is think and most of your time is alone.

And this is where Facebook is a mixed blessing. I love seeing what my friends are doing, and finding out about their parties, barbecues, weddings, babies, pets, outdoor shenanigans and the fun they're all having. I love being able to then chat to them about said fun on the little chat thing there. It's nice and makes me feel less lonely.

But sometimes. Well, like last night in fact. Everyone I knew on Facebook was either at a wedding, a BBQ, a party or a hen weekend. Literally everyone. Pretty difficult to remain positive while having the distinct feeling of being left out - completely unfairly, as I know I have people I could hang round with should I ever be well enough. But it sort of felt like when I was at school, before I'd learned that you had to actually interact with people if you wanted any friends and party invites. I was lonely then and somehow, 25 years on, I still am.

Instead of going to a BBQ/party/shagfest/date/whatevs I watched a documentary on the Tudors. And it wasn't even any good. My cat knows more about the Tudors than what they told us on that documentary. Henry VIII had a bad temper did he? DID HE? How fascinating. What an insight you've just given us into fuck all Mr Historian person. And I kept looking at Facebook as I was watching the documentary and knew that I shouldn't be comparing my life with Facebook lives. But I couldn't help it.

I'm pretty sick of watching life happen to other people. As soon as I'm better from this bloody abortive operation then I will be on the case - time to get some complaints filed and quotes gathered for private surgery. I need my life back. I want to be the one making the status about my fabulous weekend, not reading about it from my sofa.

Man, I wish invalidism was as exciting as in Emily Dickinson's day, or Florence Nightingale. I could lie on my chaise lounge dictating letters to the prime minister about healthcare reforms. And poets would come and court me. It'd be ace.

Mine is more along the lines of attempting to walk to Sainsbury's and almost passing out and puking at the counter before crawling up my stairs to collapse on the sofa. Doesn't have quite the same ring to it, does it?

Saturday, 1 June 2013

New research shows...

... that undergoing general anaesthetic increases your chances of Alzheimer's and other brain mushing diseases. Well, that's nice isn't it? Just what you want to read when you've just undergone general anaesthesia for the eighth time in your life and this time it was for NO REASON AT ALL.

I have been a supporter of the NHS in the face of a fair amount of dodgy treatment. I always think that it would be so much worse if I was in the Third World. Or America. And I have never received a prescription or had an appointment without reflecting that we're lucky as fuck in this country to have free healthcare for everyone.

And then this week happened. And I'm done.

They sliced me open, had a good rummage around, saw that yes, my endometriosis has got a lot worse - they saw loads of it apparently, but didn't bother to burn it off.

"I'm sorry, what?" said I from my prone puking position on the hospital trolley. I

 reacted badly to the archaic anaesthetic they chose to inflict on me - I have never once in all the years I've been experiencing the joy that are NHS operations had a mask thrust over my face so I could breathe in nitrous oxide. You know, because it's not the 19th century anymore and we should be past all that. It makes you sick as a dog and gave me an uncontrollable shaking fit as I came around. So that was a nice bonus.

"Yes, well, we didn't have time."


"We didn't have time to burn off the endometriosis. If we'd done that someone else would have been cancelled"

But why? Why didn't you schedule enough time you massive bitch? You already knew I have endometriosis because I've had this done before. What is the fucking POINT of opening me up to confirm something I ALREADY KNOW but not HELP ME?

She was a mega bitch. As soon as the consultant swept in to the ward in the morning to talk with us all before she opened us up, I could tell she was a bitch. She didn't even try and hide it. She was rude to the really lovely anaesthetist, rude to the nurse, to the student nurse and to the patients.

She rustled her paper. "Why do I have a note saying YOU are first on my list? hmmm?"

"Maybe because you cancelled me with less than 24 hours warning last time?"

I mean, I don't know. But it's just a thought.

"Well, here's the consent form but you don't have time to read it. Just sign it, yes? Yes? Any questions? No?"

And she's gone. Rustling away in a self important blur. I feel less than reassured.

But, y'know, I'm here. Finally. All the need to do is go in there, laser off the bad stuff and we're good to go. I will have some relief, at least for a while, and might be able to get a semblance of my life back.

The 'ward' is a room with six sad looking chairs facing into the centre of the room. Six women sit sheepishly looking at each other, pretending that it's all completely normal.

"Are you pregnant?"


"Are you sure? People often don't realise they are."

"No, really. I'm sure. I haven't had sex since last July."

"Well, do a test anyway."


So the first thing I do is wee into a pot. And remember that from now on I need to surrender any semblance of dignity I may have.

I sit uneasily on the chair and am handed a backless robe, paper knickers and those weird leg stockings. I sit back on the chair in my finery. It just feels so awkward. A ward without beds is weird. Really, really weird. The student nurse tells me that it's time for me to walk to the operating theatre. Yep. Walk. To the operating theatre.

I mean, why not?

We get to the corridor and then she realises she forgot to ask which theatre I'm meant to be in. Reassuring. She skips off to find out. I stand in a public corridor trying to look nonchalant while trying to hide my paper knickered ass from the curious gawps of passers by.

She comes back and eventually we find the right place. They are lovely and ram the canula in with only minimum pain. And then they come at me with a mask. "Do you want some oxygen?"

I like oxygen although I've never been offered it at this juncture.

Just as they clamp the mask over my protesting mouth, they start mumbling about opiates and 'sweet smell'. It's fecking nitrus oxide. Last seen used as an actual anaesthetic in Queen Victoria's day. I have barely seconds to get angry before it knocks me out. It is single handedly the most horrible way to go under general anaesthetic that I've ever endured. Usually they just pump stuff into your arm and you eventually drift off, after the usual depths of hell sinking feeling. This stuff basically chokes you out.

I come round and have an uncontrollable shaking fit. Like, I couldn't stop. I was sick and shaking like someone with Parkinson's. The nurse told me on more than one occasion that, as my temperature was fine I couldn't be cold and it's in my head.

Yeah, OK, lady. In my head, is it? Tell that to my limbs as they flail around uncontrollably.

I get back to the ward eventually.

Approximately 90 million hours later bitch consultant wafts in. "We found lots of endometriosis to the right of your womb."

"Right - so you ablated it, right?" An ablation burns off the endometrisois patches so that you have a fighting chance of having a period that doesn't feel like it's killing you from the inside out.

"No, we didn't."

"Er, why?"

"We didn't have time, dear. Oh and your bowel is fused to your womb and you have an awful lot of scar tissue from your appendicitis."

"My what is what now?"

"Your bowel. Fused to your womb. Probably very painful [you DON'T SAY] but you need to go and sort that out with someone else. Oh, and it's likely you have colitis as well."

At this point I'm still majorly groggy but it sounds like she just told me that she has diagnosed endometriosis - which I ALREADY KNEW I HAD BECAUSE I HAVE HAD AN OP LIKE THIS BEFORE - but hasn't done ANYTHING to actually, you know, help me. And in fact, is now shooing me away like I'm some kind of nuisance.

"What happens now?"

"Well. You go to your GP and get the coil."

"I've already tried the coil three times and it doesn't work for me."

"Well, try it again."

And she's gone.

That was it.

She opened me up, stuck probes in me, found loads of endo, a fused bowel and a casual diagnosis of colitis and then just zipped me back up again.

I basically went through that for nothing.

And now I have to go and fight the GP for another specialist, more waiting lists, more months waiting in pain to try and find someone who might actually help me.

And I actually feel bad. Like it's my fault somehow. Like I'm going to let down all my lovely friends who have been so kind while I've been ill and so hopeful that this will actually help me and I might get my life back. I feel ill and in pain and so, so, so disappointed.

It's time to take back control and face facts. The only way I will get anyone to help me is to pay for it. The NHS doesn't work anymore. They are concerned with getting through operations to meet their targets. It was clear that this consultant didn't give a shit about my problems and my illness and how much it's affecting my life. I have suffered with chronic illnesses since I was around 24 and I have waited for the NHS to help me. In some cases they have left me on waiting lists for 12 months + before operating (that was my gall bladder - when it came out they were appalled that it had been left in me for so long as it was rotting. So that's comforting). And now they've actually operated on me without treating me. What a waste of tax payer's money that was, you dumb fucks.

So, I'm going to have to try and find some money and I'm going to have to try and sort it out for myself. Because finally it's clear to me that the NHS is dying. And it's dying fast. And I'm done with putting any faith in a broken, corrupt, unfair system.