Monday, 30 April 2012

Misery and Miracles

I made it!! for those of you who don't follow me on twitter, it's taken me all day to negotiate the endless journey to out-patients so that I can blog on one of the public access computers.

I'm afraid I've rather taken a turn for the worse. It seems I was in denial and in fact, my crohn's has been playing up all along. Perhaps I got so used to saying "fine" when anyone asked, so used to not eating when it might cause embarrassing symptoms or unbearable pain that I didn't notice the Sickie-Jinx sneaking up on me again.

Well, he has now. I'm sitting here, in mis-matched pyjamas, in a public lobby with hair like a slightly radical brillo pad. I've got a feeding tube in my nose, and tomorrow I will be hooked up to a pain pump until I wait for surgery.

Yep, surgery. Because my obnoxious bowel has decided to get all blocked up again. This is what made the journey from bed to PC so arduous. I couldn't even sit up until about 2.30 this afternoon and I had to negotiate the endless coridors in small chunks. So why today? Why did I have to write today?

Yesterday morning, my world decided to implode. Or rather, the few remaining bits that worked.

I'd woken up that morning to find that the liquid feed, that should have been drip-dripping into me all night, had in fact, been drip dripping on the floor, forming a sticky, sugary, gloopy puddle around my laptop. The poor thing didn't stand a chance. It was death by drowning.

I do everything on my laptop in hospital - watch tv, DVDs, blog, Skype, tweet and listen to music. Faced with an endless hospital stay without it and no money to replace it, I was desolate. At almost the same moment, Dave rang. He had been on the way to visit me to snatch a few precious hours with my boys before they had to go home again. The car had broken down on the M11, spewing oil everywhere in what sounded like a fairly terminal tantrum.

With no money at all for repair bills, I faced the rest of my stay with no visitors at all. I wouldn't see my babies for weeks - it was unimaginable.

In misery, I splurged my disasters all over twitter, then set to making calls and searching websites to help Dave get the car sorted out.

They got here in the end, in time to spend a few hours with me.

When I checked twitter a bit later, the amazing @fionajnicholson and some other friends had set up a fund to buy me a new laptop and help with the petrol and repair costs to the car!!! By the time I found out about it there was over £500 in the account and this morning it had reached a thousand!!!

I'm amazed and humbled that so many people wanted to help me. Dave and I were in desperate straits, already borrowing money from family to afford the visists to Cambridge and unsure how on earth we were going to manage.

Last night, for the first time, I went to bed without worrying and this morning, my first thought was relief. That's worth all the money in the world. More than that though, it reminded me how amazing people can be, how kind and generous. In a world where everyone and everything seems corrupt and rotten, it was a beautiful thing

This won't be the most eloquent post I've ever written, my hands are shaky and I think my blood is about 80% opiates, but even if the rest makes no sense at all, I just wanted to say "Thank You" from the bottom of my heart.

Saturday, 21 April 2012

It's all in your Head

Every time I'm in hospital, I learn something.

Sometimes the lesson's been very, very hard to learn. To survive a long term illness, you have to be prepared to search your soul. You have to be brutally honest with yourself. You have to set goals every day and there are lines you must never cross.

However painful or uncomfortable, the lesson is what it is and you can't run from it. It follows you. Because no matter what happens, you can't wish the ill away. You can dump a selfish lover or sell a dingy flat. You can change your job or your friends but you can never wish the ill away.

I've seen great cruelties. There it is, it's a fact of life. There are many excellent nurses and dedicated doctors, but wherever there is vulnerability, there is cruelty.

But the greatest cruelty of them all is doubt.

In the 8 days I've been in hospital, I've met a woman with crohn's. Hard to believe, I know, but her crohn's is even worse than mine. She's had more operations, she gets more symptoms. But even now, after all those years, she still has to fight the doubt. The casually dismissive GP, the suspicious pain specialist, the nurse who thinks she knows best. And a little voice, still whispers in her quiet moments "It's all in your head."

There was the girl celebrating her 21st birthday, today, alone in an NHS bed. Her face was gaunt, her bowels had all but stopped working, her heart rate was all over the place, her joints frequently dislocated. But for the last two years she'd been told that these oh-so-physical of symptoms had to be "all in her head"

Then I met the lady in the wheelchair. Frequently admitted to intensive care, unable to breathe. Unable to walk, unable to eat, fed through a tube. But guess what? A consultant, somewhere way back in the mists of time had concluded she had "conversion disorder". You know what that means? Yup, you guessed it. It's "all in her head" Actually she just got a diagnosis, but that one doctor, all those years ago ensured that no-one would take her seriously for nearly a decade.

And then there's me. 6 years of vomiting, 6 years of pain, tears on the way to school, delirious through long nights of misery. But I was "just" anorexic or "just" depressed. I was surely bullied at school or my parents beat me? Either way it was "all in my head".

Do you know what that does to you? Do you know how much strength of character it takes to face 6 doctors, all stood around your bed and tell them you think they're wrong? To refuse a course of treatment you know is irrelevant? To do it for weeks, months, even years, until you find a saviour? A good doc after all the bad docs?

It doesn't stop with a diagnosis. Even with a label, you then have to justify your symptoms. If they don't fit neatly into the box the label came on, it must simply be "all in your head." You can spend all day telling a doctor you feel miserably nauseous, but if it isn't a symptom of your condition, he'll conclude it's "all in your head." You might be told that you "think about minor aches and pains too much" You can claim that a drug gives you a rash or a fever, but if it isn't a known side effect, the doctor will reassure you that it's "all in your head" Only when you find yourself with septicaemia will anyone begin to listen. If you get too much pain, you'll get a new label - "drug seeker" to go on your box. If later, they find a huge, weeping abscess to explain the pain, you won't quite be able to scrape the label off the box again.

Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know - there is only one thing worse than trying to get an out of hours doctor to see you and that's having to do it on a bank holiday.

We wait until we can't walk, talk or eat before we'll go near a hospital bed. We spend weeks longer than we should convincing ourselves we're really fine. In fact, convincing ourselves that it's "all in our heads"

You find yourself justifying things with friends that you don't need to explain. You doubt yourself - did you cry off your sister's birthday because you were heaving over the sink, or did you somehow make it happen because you didn't really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?

It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it's "all in your head"

Luckily I have an amazing consultant. Every time I'm in hospital, waiting for surgery, he brings a scrummage of student doctors to come and play Diagnosis or No Diagnosis. I have an atypical case of crohn's and it's not easy to diagnose from my symptoms.

A dozen or so pale and studious looking very-young-people (they didn't used to be so young....) troop into my cubicle and look nervous. Before they are allowed to ask me any questions, or examine me at all, my consultant picks on one poor unsuspecting soul and asks "Right, what can you tell me about this patient" He will invariably reach for my notes, but my consultant stops him.

The student squirms for a while (I can tell how much my consultant likes or dislikes them now by how long he makes them squirm for) and just as his discomfort starts to seep out onto the ward, my doctor does his party trick :

"Well, Sue has her own blanket, her own tea cup, her computer and a picture of her family. That tells you she's done this many times before. It tells you she knows she will be here for weeks not days. There are non-fiction books on her dresser, that tells you she's perfectly intelligent enough to explain her symptoms to you and she has no flowers or cards. That tells you she's been in for more than a week, because no-one thinks to send flowers after that and no-one sends cards to people who are always ill. You can be fairly sure that this patient will give you an informed, specific account of her illness and her current symptoms. If you listen to what she tell you, you've probably got 95% of your diagnosis."

After 30 or so hands all take a turn at tapping my chest or listening to my heart or palpating my bowel, he leaves them with a warning :

"Don't ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don't ever blame a patient if you can't find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.

And with that, he wafts off in a cloud of quiet importance.

Doubting your patients, judging them, labelling them, is dangerous. But most of all it's cruel. It leaves scars deeper than any surgeon. Yet I've met precisely four people to talk to so far this stay and it was ALL "all in their heads." Unlikely, isn't it.

Friday, 20 April 2012

One Ermine to Go, please!

Could there be anything more insulting to ordinary people, anything that would better confirm how totally out of touch our MPs are, than resignations over Lord's Reform??

As we, the voters, plead with MPs to save our NHS, protect sick and disabled people from the cruel attacks of the Welfare Reform Bill, beg Government not to increase tuition fees, privatise our schools or scrap legal aid, yet again, we see the only issue to stir their self-serving, venal, decadent egos is something that might affect them.

The public couldn't care less about Lord's reform. They absolutely could not give a fig.

MPs are, they say, concerned that an elected second chamber might start to "impose it's will on the commons." This translates into "Might stop us from doing exactly what we like, when we like."

According to the Telegraph

"A third MP warned of widespread rebellions in the Commons if the plans went ahead. He said: “If the Government presses ahead with this you will see rebellions off the scale with what we have seen so far.”

So the loss of ermine, the potential loss of a comfy place to rest one's slippers at the end of an arduous career in Westminster is the only issue that will drag them towards actually doing the job they were elected to do?

Never mind the disabled children losing half of the support they rely on, or cancer patients being sent to the jobcentre. Never mind poor children going hungry in our schools or homelessness rising dramatically. Forget a lack of affordable housing, rising crime or the sinister rise in suicides since austerity won the day. No thought for riots or gangs or forced prostitution? No flicker of concern over removing justice from some of our most vulnerable?

Nope. Not a LibDem or Conservative rebel in sight then, when we so desperately needed them, so desperately tried to engage with them.

It really is time our politicians took a good long look at themselves through our eyes. Their selfishness gets more breathtaking by the day.

Sunday, 15 April 2012

48 Hours and the World Changed

48 Hours. Just 48 Hours.

That's how long it takes to turn me into a frightened shell of Sue. How long it takes to take away all sense of who I am, of how the world usually works.

Through 28 years of Crohn's disease accompanied by just about every medical emergency you can think of it's not the symptoms that have hurt me most. Not the tubes, or hunger or endless nights retching in agony. Not the sudden haemorrhages or failed procedures. It's the people.

Nurses are not all angels. Some are cruel bullies. Some exist purely to leave you, writhing in pain when all the doctors have gone home. They leave you with a smile, or a shrug. We see it on the TV. We read reports, we witness the cruel abuse, exposed by a hidden documentary camera. But we don't like to believe it do we? What does it say about us - what does it say about human beings to accept that when we are at our weakest, our most vulnerable, when we literally have to hand our lives over to those charged with caring for us, they might let us down?

I know them, after all this time, from the clip of their footsteps, the way they speak at you but never wait to hear your answer. I know them the minute they come onto the ward. I sense the resulting chill in the atmosphere, the collapse in moral.

For two whole days things went well here on N2 in Addenbrookes hospital - flagship teaching hospital, beacon to the country.

We got a call at 5pm on Thursday night telling me they were going to admit me. They couldn't promise they could hold the bed til the next day, so Dave and I frantically arranged childcare, borrowed the petrol money to get here, dropped everything and drove the two or three hours up the motorway to Cambridge.

It all went well. The nurses and healthcare assistants were lovely. I'm in a private room and they got Dave a mattress so that he could sleep on the floor. My consultant ordered every test known to man in a bid to make me better before I actually die of malnutrition. The food was OK. People brought me cups of tea every hour or two and I have all 157 episodes of West Wing to watch - what more could I want?

Until last night.

My drug chart had been written up wrong by the doctor who admitted me. No big deal, I simply mentioned it to a nurse in the morning. It was for painkillers - the only painkillers I can take, but I'm not here because of pain, so I didn't agitate or fuss. Until some time around lunch yesterday.

They've got me drinking funny little cream shots for calories. They appear to be making my crohn's grumbly. I waited and waited for the chart to be changed, only for a Dr to say...... no. Not my doctor of course, noooo a doctor who doesn't know me at all and hadn't checked my notes!!

He said what now? He said I couldn't have the only painkiller I can take? One I have used responsibly for 29 years? One I take at home if I need it? He couldn't erm, write me up for my own prescription????

By 10 Oclock, I was writhing. Here I am, in a hospital in more pain, suffering more than I would at home. Finally a 12 year-old-netball-team-most-junior-of-junior-doctors came out and wrote me up for a one off dose in amongst many hints and outright suggestions of junkieness. We got past all that about 20 years ago. This, however, does not stop me from having the same old conversations, the same nights in agony while some jobsworth tells me it doesn't matter.

But that's not the worst bit. Noooooo. The worst bit is coming into my room after midnight and threatening Dave with security if he didn't leave!!!! Completely out of the blue!! After no hint at all that he shouldn't be there, after being told it was fine for him to stay (they bought him the bloody mattress to sleep on for God's sake!!) after 2 whole days of no-one batting an eyelid or even suggesting it might be a problem, they throw him out. At 12.30 am in the morning.

He had nowhere to go!! We live, as I've mentioned, three hours away. He'd had a beer with his dinner. He couldn't drive. We had no money for a hotel - I've already mentioned we had to borrow money for petrol just to get here - and I imagine, would not have been able to get one that late at night anyway.

They didn't even ask him to leave!

The first we knew was literally an aggressive Sister threatening him with security!! At midnight!!!

Being Dave, being calm and sensible, he simply got dressed, put his shoes on and went to sleep in the car outside. When he told the sister he would do that she told him "Go home now!! Why can't you go home now!! If you sleep in the car park, security will make you leave. Go home now!"

I just stood there in shock. I couldn't quite believe it.

Human beings would not act this way. Imagine being invited to stay with a friend only to be thrown out in the middle of the night. More terrifyingly, imagine if your friend seemed to see nothing at all unusual or out of the ordinary about ordering you to sleep in your car when you have no-where else to go?

These people are odd. Slightly un-hinged. This is not the way the world usually works, but once you become a patient, it doesn't matter. "They" can do what they like to you. "They" can leave you hungry, if they feel like it. "They" can refuse to get you a drink. "They" can watch you writhe in pain with a shrug or simply not come to answer your pleas at all.

No amount of eloquence or calm reason will help. There is literally nothing you can do to appeal to the better nature of these people. They don't have one.

My consultant has ordered every test known to man. They will take weeks to arrange and schedule. I have no realistic idea at all how I will make myself stay here. I cannot lose myself again. I can't spend weeks watching the PTSD flashbacks whirl through my mind. I can't voluntarily offer myself into the jaws of people who treat the weak and helpless with cruelty.

How? How do I make myself do it? The only answer anyone has ever managed is "You have to, to get better" Well, no. This makes me worse. So very, very much worse. Oh, I might survive. They might, in the end, find out what's wrong with me. But at what cost? You must all know me by now!! I'm not given to
unreasonable outbursts. And I HATE injustice. More than anything else in the world.

I cannot choose to be bullied, choose to stay in a place that frightens me beyond measure with people who act inhumanely.

Friday, 13 April 2012

The Road to Hospital - Part 1

Where do I begin?

You might all remember I was admitted to my local hospital just days after we released the Responsible Reform (Spartacus) Report

I'd been unwell for months, hacking and spluttering my way through one chest infection after another, but by the end of last year it was obvious that, in fact, I was "Unwell".

"Unwell" is the point where I realise I'm not just unwell. You probably have to have had a chronic illness for a decade or two to know what I mean, but it's that moment of creeping realisation, that flutter of recognition flashing through your mind like scenes from a film : Compass conference, June = Unwell. Singing my welfare song, July = Unwell.Camping with the boys last August = Unwell. Oldest son's 7th birthday (October) = Horribly Unwell. Working on Spartacus Report = Unwell, Unwell and Very Much Worse.

I realised I'd been living on paracetamol for low grade fevers for most of the year. I realised that I'd had a cough that had never really gone away. I realised I was losing weight, always complaining of exhaustion. I wasn't walking far, struggled to get the kids to school or get around a supermarket. Even by my usual standards things were Not Right.

By the time I went into the local hospital, I could barely get out of bed, my face was swollen, I was coughing so much it was choking me and I'd lost more weight.

Because of the strong, chemo-style immune-suppressants I take, this not a good thing. As I recently explained Humira (or Adalimumab) increases the risk of severe infections and most commonly, TB. It is not just a "Oooh, be careful if you take this drug your head will fall off" standard warning - it's in bold type on the front screen of the website;

"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."

It goes on to say;

" In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal.[1]"

I never really blogged about my stay in the local hospital (Worthing). It was so odd, so traumatic and surreal, I wasn't quite sure what to say. Dangerously, they made me doubt myself. 

It all went fine in A&E. The doctor who admitted me immediately knew why a nasty fever and persistent cough in someone like me needed to be treated with caution. He admitted me to the Acute Medical Unit ( the clue is in the name!) 

A House Officer came to see me that night. He'd just finished his gastro roatation and was newly on the respiratory team! Perfecto. He did all the right things. He explained how because of the Humira, they would need to test me for "things we wouldn't normally test a 38 year old for". He put up a broad spectrum IV anti-biotic and took blood cultures and ordered a sputum test. So far so excellent. I have no idea who he was but I'm confident he'll make an excellent Doctor. 

The following morning, a female consultant marched into my room with the House Officer and the usual team of heavily cowed minions. 

She barely spoke to me (never a good sign that, when they talk above you rather than to you.) and the first thing she did was shout at the House Officer "You'd better start realising this is NOT gastro". With that she started scrubbing lines through my prescription chart and tutting. 

She listened to my chest and said that it was clear. She said my X-Ray was clear. She said I just had "a virus" and I could go home (?!?) I hawked up my best throat rattle for her, but she said I "probably had a touch of asthma". I started to say I'd never had asthma, no-one in my family had ever had asthma and that  
my symptoms had been going on for 8 months, but she swooshed out of my room majestically in a puff of
disdain. I heard them discussing my X-Ray in the corridor "Well, the bronchia are a bit thickened but that doesn't mean anything"

I was shocked and upset - what had changed in 12 hours? I must have cried a bit, because the nurse asked me what was wrong and said she would call the doctor back.

Dr Arrogance never returned however, and an energetic, kind South African doctor appeared to be "assigned" to me. Nonetheless, Dr Arrogance had made her mind up. With none of my copious notes, (which reside at Addenbrookes in Cambridge where I have all my bowel treatment) no idea of the history to my symptoms, without even weighing me. We were done, thanks awfully.

I was 6 Stone 9 by this stage. Both of my children were at home with raging temperatures, but they wanted to discharge me! I was mystified. Every time I tried to get out of bed, a nurse had to catch me, but Dr Arrogance still insisted I was fine.

Dr South-Africa did his best. He ordered a load more blood tests, but kept telling me how great my bloods looked. I explained over and over that they always do (even when my bowel was one huge festering infection my bloods barely roused themselves to notice) but he became more and more frustrated, his hands tied.

In the end, at 9pm that night, as I very calmly tried to run through the reasons I didn't think I was fine, he exploded. He screamed at me - yep screamed - for twenty minutes, an incoherent attack. It was so bad and so loud a nurse came into my room and looked at me as if to say "WTF?" but he ranted on regardless.

Crying and scared, I stopped answering him in the end - it was just making him worse - and stared at the bedspread.

Finally, he stormed out, but I was so exhausted, so poorly, I barely knew my own name. Half an hour or so later, he came back. His attitude had totally changed. He'd printed out the drug leaflet for Humira and seemed to have realised I wasn't just being a silly little girly. I pointed out, very reasonably, that in the 17 years I'd lived in Worthing, I'd never once come to his hospital and said "I know something is wrong". With my 28 years of crohn's experience, did that not tell him something?

*Sigh* I could go on, but I might as well cut a long story short. Dr Arrogance had made her mind up, Dr South Africa turned out to be frustrated but his heart was in the right place. There was a split - he and my nurse clearly didn't think I should go home, but the decision wasn't their's to take. They washed their hands of me.

**This is a long story, so more tomorrow

Tuesday, 10 April 2012

Opinions please?

One other short but very important post :

The excellent DPAC (Disabled People Against Cuts) Are planning a mass day of protest on 18th April.
Disabled people, their friends, supporters and carers will be meeting at 1.30pm in Leicester Square. If you think you can possibly make it along, every last person will help.

A few days ago, DPAC were appealing for funds to help cover the costs of transport to help people get to the protest.

We have £956 left in the Spartacus Report fund and I wanted to ask you all if you think it would be a good idea to make a donation and if so how much you all think we should give.

It's your money, given with trust and generosity. We agreed that we would keep the money for fighting the £9.2 Billion of cuts disabled people are facing. If you think this is a good cause, do please leave a comment but equally, if you don't like the idea, feel free to say that too.

PIP survey - Please help?

The wonderful Sam Barnett-Cormack and have designed this survey to help them put together an official Spartacus response to the PIP consultation.

We'd be REALLY grateful if you could spare a few minutes to take part. The more people that reply, the more reliable the results will be.

We don't feel that we should speak for you - but would love to base our response on what YOU think and need.

Thank you so much.


Saturday, 7 April 2012

Running the Pain Gauntlet

The last twelve hours just reminded me how very hard it can be to live with a chronic - and complicated - illness.

I'm allergic to morphine. Lethally so. It lowers my blood pressure to crash-trolley levels and has somehow crept onto my various drug charts with enough regularity to confirm the fact.

My only option for pain relief is pethidine, and when I'm stuck on "Groundhog-Day-Vomit-Marathons" it provides the only comfort I've ever known.

The problem is, pethidine is a "dirty" drug. Effectively, a man made form of heroin, it is said to be much more addictive. It is neurotoxic, only works for a short time (4 hours) and can only be given in tablet or injection form .
Scientists have invented many more innovative delivery methods for morphine - Oramorph lollies, oral syringes, patches and even small tablets that can be tucked into your gums to be absorbed more effectively.

Pethidine in 2012 is considered outdated and unpleasant. Few pharmacies hold it in stock and even some hospitals no longer use it on their wards. However, if you're allergic to morphine and can't take things like NSAIDS, ( None Steroidal Ant-Inflammatories) that leaves just two options : paracetamol and pethidine.

Well, paracetamol, whilst a super-drug,  doesn't help my bowel pain at all.

So that just leaves pethidine.

Regular readers will know that this is the bane of my life. It has put me through more trauma than any illness or complication.

- I'm routinely dismissed as a junkie or a hypochondriac - even clutching my various letters from pain specialists, GPs and a repeat prescripton as "proof"
- Some doctors simply won't prescribe it any more
- Scripts are nearly always written incorrectly and because pethidine is a controlled drug, pharmacies will not fill the order until the script is 100% correct. Hence a new round of pethidine ping-pong with Suey limping backwards and forwards between the doctor's surgery and pharmacies
- It often takes hours for me to get a dose as an in-patient, leaving me in horrible pain outranked only by the emotional pain of being abandoned, let down.

It would be sensible for me to build up a little stash for emergencies, but it never works. I only like to use pethidine when I'd score my pain levels at 8 or higher. Just imagine the will power required if you have something in the house that can ease, say. a 5 or 6? I've tried asking my Mum or Hubby to keep a secret lot for emergencies, but I always end up using them instead - unable to "grin and bear it" when I know something is within my reach that will make the pain stop

 You'd have to be Wonder Woman to resist. I am not Wonder Woman.

When it comes to this level of pain - tears springing to my eyes with no warning, panic setting in, writhing, vomiting - I'm completely helpless and hopeless. Too many long nights waiting for help that never came have given me Post Traumatic Stress Disorder (PTSD) triggered by even the mention of the word "pethidine"

I don't like keeping a heroin-copycat in the house. I live in fear that my amazing children will somehow find a  syringe lying about or a broken glass ampoule top. My GP and I have an understanding. I only ask for a script when things are desperate and she prescribes it for me within hours, freeing me from the 2 day repeat prescription rule.

Yesterday was a bad day. On Thursday I'd eaten cauliflower cheese for supper and immediately knew something had gone wrong. All night and all day yesterday I hoped it would ease off, but it just got worse.

By about 8 O'Clock last night, I knew I would have to run the terrifying gauntlet of trying to get a prescription. For pethidine. Which everyone hates. From a random out of hours Dr who has none of my notes.

Miraculously, a Dr phoned within minutes and couldn't have been nicer. She wrote the script out there and then and tried to fax it to a Tesco's pharmacy nearby. It wasn't in stock.

Poor Dave rushed all the way to Horsham (about 20 miles from our home), picked up the script, and raced as fast as he could, back down to Brighton.

I'd found a pharmacy that was open (Weston's on the Lewes Road) but despite begging the pharmacist to wait just a few minutes, she refused, and when Dave got there at just 3 minutes past ten, they had locked up and gone home.

While several of us phoned every pharmacy within a 50 mile radius, Dave went on to the Boots in North Street, but despite claiming to be open until midnight, that was all shuttered up too. We phoned all 3 hospitals in the area, to see if they could suggest anything, but none could. (or would?)

By about 10.30, I told Dave to give it up. I would limp through last night and we could get the meds first thing in the morning. At 8.30am, Dave was literally waiting at the door of Boots. But the farce goes on!

No-one in Worthing stocks the meds I need! We spent all morning, phoning every pharmacy for miles, but no joy.

In the end, one pharmacy found 5 injections to keep me going, and now I need to go through the whole process again to get a different script written up with the right dosage people DO tend to keep in stock.

Anyway, the whole point of this rather rambly post is to show how exhausting it can be, just to manage your own condition! Navigating the behemoths of the NHS and the DWP saps so much strength, you could almost say it was a full time job........


I wrote this poem when I was a mere 21 years old. Still as apt for me today as it was 17 years ago


He won’t believe me I know he won’t,
In his 4 x 4 and laboratory coat.

He’ll call straight back, she said he will.
I’m to tell him it hurts and explain that I’m ill.

He won’t be listening, anyway.
With his dinner waiting and golf to play.

He won’t sit down or examine me,
He’ll wait at the door, impatiently.

He won’t stay long, I’ve seen it before.
He’ll shove in the needle then run for the door,

But on the way out, he’ll find the time
To lecture me sternly for all my crimes.

He’ll scold my weakness in calling him out,
For eating or breathing or lazing about,

And all he’ll see is my skeleton frame.
He won’t check my notes or remember my name.

He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.


He hasn’t called back, they never do.
We’ve called again, but I’m 4th in the queue.

He’s probably still at the golf club bar,
Or had one too many to drive his car.

But really, don’t worry, I’m used to it all.
I learnt not to scream, there’s no point at all.

It only confirms what they know to be "Fact",
My selfish psychosis all part of the act.

He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.

Thursday, 5 April 2012

It's Government Jim, but not as we know it...

A scary thought has been scaring me.

What if the Government really aren't fit to govern?

Now that I've recovered from the blast of scorn you all just harrumphed at me, ("Well, of course they're unfit to govern") I mean really unfit to govern. Literally incapable?

I mean, we've had incompetent ministers before, or shambolic departments, or disastrous decisions taken undemocratically. We've had sleaze and scandals, out-of-touch chancellors and dodgy economics. We've had inequality, we've endured arrogance, we've seen tough times and recessions.

Our high streets have looked just as desolate before, our living standards have been squeezed, it's not the first time unemployment has soared to the 3 million or so it is today.

I'm sure we've had Prime Ministers more lazy - some may even have taken more holidays than our own. I imagine there may be one somewhere back in the mists of time who has made more U-Turns.

The Tudors were very fond of criminal spin doctors, I'm sure they encouraged strikes and unrest during the Industrial Revolution. We tried austerity in the 30s and got it horribly wrong then too. We've had a two tier education system before and we've seen politicians argue against the existence of a National Health Service.

Previous Chancellors have designed car-crash budgets and it's far from the first time disabled people have been used as a convenient punch-bag. Why, it used to be de-rigeur to see cripples with begging bowls, in rags, outside the gin joints. It's certainly not the first time our civil liberties have been threatened.

But all of it? All at once? Not one minister capable of getting something right? All of them lying to us and to Parliament? A Chancellor so wrong it hurts? A Prime Minister so flaky, his new nickname is "Cadbury's? A Home Secretary that the police detest, and an education minister reviled by teachers? No, more than reviled, mocked for his odd megalomania? A Justice secretary ripping up our Human Rights and access to, erm, justice. A Work and Pensions Minister hell bent on a zealous, slightly Spanish-Revolutionary mission? I haven't even mentioned the Health secretary - my adjective-drive is overheating.

There are no job interviews to become an MP. Experience is not required. You don't need to understand the NHS to run the health portfolio, or to have been a teacher to dabble in schools. In fact, you don't need to have had any kind of job at all.

What if, 2010 was the year we elected a Government so incapable it's actually dangerous?

Tuesday, 3 April 2012

Surveillance State

I'm not at all paranoid. Not a conspiracist and in fact, some would say I'm ridiculously naive. If I weren't I would never have taken on the Responsible Reform report (Spartacus Report) for a moment.

Hubby and I had a few conversations about potential Armageddon scenarios - would the Daily Mail train their telephoto lenses through our bay window? Would the DWP go rifling through our bins for something to shut me up? Would shadowy blokes with curly wurly earpieces show up at the door to make me an offer I couldn't refuse? We always decided not. I mean, why would they? What could they do? Discredit the poorly girl in the papers? I didn't care. Lock me up? It would be PR hari-kari.

I am a realist though, and to be honest, I always assumed that if the Government wanted to know what was in my emails, what I was saying on the phone and to whom, they could. I mean it's not difficult I believe?? I'm about as techy as your 86 year old Nan but lots of my friends have had their emails hacked by far lesser organisations than the UK Government. (After all if it's good enough for News International.....) If the combined talents of MI5 and other assorted letters and numbers can't keep an eye on the likes of me, I would in fact be worried for our national security.

Well, here's a little story for you. Kaliya Franklin and I talk on the phone most days for a good hour or so. We plot and strategise, plan and moan, put the world to rights, diagnose our various ailments and gossip.

As soon as I posted the appeal fund to raise money for "research" into DLA our phones went all funny.

At first we thought it was her phone line. Then we wondered if I was chatting too far from my home hub. Thing is, it couldn't have been because for weeks it only ever happened when I was on the phone to her. There would  be a click, then the phone would go all echoey.

It became so normal, that we would stop talking about anything interesting and starting flirting with the "Men in Black".

We asked if they could pop up to the Wirral and help Kali move her fridge, we would ask them who shot Kennedy and whether Diana was really bumped off. Generally, we'd ask them to make themselves useful and come and help one of us out with jobs we couldn't manage - taking the rubbish out, clearing up the cat sick Kali's puss produces far too regularly - that kind of stuff.

As the report took shape, I was on the phone all day every day to journalists, charities, researchers and designers. I started using my mobile if I wanted to have a private conversation and stopped emailing details of the report.

A few weeks before the launch, other calls started to go all funny - only to other campaigners - never to my Mum or the doctors or my little boy's school. In the end we all laughed about it - except one Secret Spartacus who likes to be anonymous and who found it utterly terrifying.

The night before we launched the report, hundreds if not thousands of "Spartaci" were ready to go. They had preview copies of the report, an agenda for the next day and the excitement was palpable. I imagine the email traffic and behind-the-scenes activity spiked like a spiky thing - if you happened to be watching of course.

For 12 hours before the report "went live" I got messages popping up on my laptop - "The security of your network has been breached. Other users may be able to access your data" This has never happened before or since and maybe happened 5 or 6 times.

On the morning of the launch, my home phones went completely dead. For about three hours, no-one could contact me at all. According to our provider there was no regional fault.

It might sound crazy, but I was very, very busy and barely really registered these glitches. Looking back, I don't really care and still accept it could have been a string of "coincidences". It could have been anyone listening in of course. The DWP are not the only organisation who probably don't want a light shone on the incredibly murky world of welfare-to-work. And boy is it murky in places. And dirty.

The point is, I never for one moment doubted that the Government could and would find out what I was up to if they wanted to.

I think if we're all going to lament and wring our hands over a Surveillance State or becoming more like China by the day, that ship has already sailed.


By the way, did I ever tell you about the time I triggered a Russian Security alert? Yes, really, I did.

I put up an article entitled "Warning : Purnell Contagion, stay in your Homes" after the ultimate snake charmer, James Purnell had oozed all over our TV screens the night before.

I was leaving for Cambridge that morning, but just as we were set to go, I checked my blog stats and there was a sudden spike - 150 people or so all read my post at exactly the same time. That had never happened before. I thought it must be a mistake, but a minute or two later it happened again. It was as if a whole bank of computers all got my post at the same time and opened it together. Odd.

I took the laptop with me in the car to investigate, and when I checked where the hits were coming from, they were all from Russia. I hadn't been blogging long and by then, I was really very freaked out indeed.

It happened 4 times in all - all due to sudden interest from Russia. I was mystified - was Purnell secretly a Russian spy? Were the KGB on the way to my house? (Unlikely, but ya know....)

After a while the penny dropped - I'd posted a contagion warning on the UK internet - presumably the entire world is on red alert for deadly biological leaks or sudden unexplained epidemics. I can only assume that for a few minutes my attempt at satire was mistaken for a global health alert.

Whoops eh?