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Martini On The Rocks, anyone?

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

Last month I described how much it hurt to inject Humira, the anti-TNF biologic which is prescribed for my ankylosing spondylitis and IBD. I scoured the internet for advice on how to reduce the pain, and found that most patients favoured numbing the injection site with an ice cube before injecting. Another patient’s nurse had advised that she rub either side of the site gently as the needle went in to increase blood flow and encourage the solution to dissipate more quickly. Someone else said that putting their leg up on a chair so it was straight, rather than bent, worked wonders. Frankly, I’d have hung upside down from a tree whilst smoking a cigar and counting to 100 in Mandarin if someone had suggested it.

Armed with that information in mind, I set up shop for my next injection. Believe me, I had to gear up to that all day. It’s like knowing you have to punch yourself in the face after dinner to give yourself a convincing black eye so you don’t have to go to work the next day. I mean, only a total mentalist would just go ahead and punch themselves in the face, right?

This time I poured myself a Martini, took a fake Cornetto from the freezer and decided to try out three new moves:

Right, let's do this

Right, let’s do this

Move One: I put my leg up on the chair, out straight rather than bent

Move Two: I rubbed the injection site gently either side of the needle as I pushed said needle into my thigh (this was harder than it sounds. I could have done with three hands at this point)

Move Three: Instead of trying to inject in one go, like I did with Enbrel, I thought some breathing exercises would help. I took a deep breath and exhaled as I pushed the plunger thing down for two seconds. I stopped for another two seconds, then did the same again. I was still on the verge of tears but puffing my breath and taking it slowly worked. It was maybe 30% less painful than before.

Two weeks later, I did all the same stuff but I also numbed the injection site with an ice-cube, swapped the fake Cornetto for some Lindt milk chocolate and substituted the Martini for a rather nice dessert wine.

Booze, drugs, legs

Booze, drugs, legs – like a scene from ‘Trainspotting’ only clean

I’m not sure if the ice, the dessert wine or Lindt were to blame (possibly none of the aforementioned) but I do know that it hurt more with a cold leg, so I scrubbed that move off the list.

Such a tiny bit of blood for something which hurts so berated

Pah – such a tiny bit of blood for something which hurts so flipping much!

My dead mink, Fried Eggs, then picked up the syringe and said he wanted to try it because, and I quote (no, really) that he ‘had a sore leg from falling out of bed’. I had to wrestle it from his little paw before he hurt himself. Kids, eh?

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Fried Eggs, no!

So there you have it. It still hurts, but a bit less. Really, I wouldn’t even do it if I didn’t have a treat at the end of it. That, and the fact that without it, I would die. I’m not being dramatic. I would die. The pain would be so agonising that I would end up throwing myself off a motorway bridge. Please don’t think I’m being glib about suicide; I’m not. I’ve been in that exact same situation and it was anti-TNF therapy which saved my life a decade ago, and is still doing so today.

That’s my ritual now. I inject, Gautier brings me a treat and afterwards we watch ‘Brooklyn 99’ on Netflix so I can laugh my head off rather than think, ‘OW OW OW OW OW MAN THAT STINGS’ for ages.

In other news, I fell off some rocks and acquired a salad spinner.

The salad spinner is my new friend; it’s made by a company called OXO who, in a nutshell, design everyday objects things better than other companies design everyday objects. If you’ve got fibromyalgia or arthritis in your arms, spinning salad is quite an effort (although granted, not one you probably make that often). I can’t even eat salad very often as I can’t digest it, but when I do, I use this. It has a clever button which does all the work for you while you stand there resting your arms and saying ‘Keep going, little spinner!’ Even their vegetable peelers glide over carrots like a dream; never thought I’d find pleasure in a peeler but I do. If you’re in pain, every effort hurts, so it’s worth investing in items which reduce that. If you’re not in pain, you’ll still have fun spinning salad. You can thank me later.

As for the rocks, Gautier and I were at a seaside town north of Bordeaux called Royan which we didn’t much like. I was in my bamboo ensemble: bamboo bag, bamboo earrings, bamboo bangles, bamboo-ish dress with bamboo buttons; here’s me taking a photo of myself in the loo, doing my best stupid idiot face into the mirror:

Bamboo overload

Bamboo overload

It turns out Royan didn’t much like me either; after a lovely dinner at a beach side restaurant at sunset, I suggested we go for a little walk on the sand. There I was, full to bursting with fish goujons and chips and so happy to be back by the sea (I miss Brighton so much I can’t tell you). Anyway, I digress. Here is my dinner:

Yum! Everything was going so well...

Yum! Everything was going so well…

Looks perfect for a midnight stroll, doesn’t it? That’s what I thought.

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I was well excited about the sand

Granted, I’d had a cocktail which must have clouded my judgement somewhat, but here’s what happened: I attempted to climb over a low wall, onto some giant rocks, then step down to the sand. Gautier was helping me. It should have been one, two, three steps and landed. Unfortunately, what I had thought was sand was, in fact, a massive, flat rock which was just looked – under the midnight sky – like sand.

Needless to say I lost my balance and was catapulted onto my left shoulder and my FACE. Yes, my face. My right leg went from under me and my foot scraped itself on the rock. Thankfully my face found a bit of sand rather than rock. I was holding my tiny bear, Chips, in my left hand. He screamed, I screamed and my aim was to save him from hitting the sand, so I held him aloft, which upset my balance even further. What a div.

Gautier picked me up and told me off. He is like that; he tells me off first, then asks if I’m OK. I wasn’t OK; my foot was bleeding and I did a cry.

Off we went, back to the hotel (which was fortunately about 20 feet away), with my sandal in one hand and a very traumatised Chips in the other. I limped back to our room and did the first aid bit. Gautier enjoys pouring white spirit on cuts and grazes; I was pushed over by a strong wind once and grazed the hell out of my hands. He just threw this stuff on them like a torturer would. I was squealing like a stuck pig. Man, that stuff BURNS. Chips wanted to help, so he put the plaster on.

Poor Chips; he was so upset but stayed calm to administer first aid

Poor Chips; he was so upset but stayed calm to administer first aid

Great job, Chips!

Great job, Chips!

The next day I limped about even more than I usually limp about, and wondered aloud my shoulder hurt so much. ‘Because you fell on it,’ Gautier reminded me. By day two, I could barely stand on it as the bruise started to come out. On day three I got bitten by something in the garden (not a camel, more likely a spider) on the same foot, which then blew up like a hideous sausage.

At one point I thought I was going to have to saw it off; fortunately some anti-histamines and a herbal concoction from the mother-in-law’s medicine cabinet saved me from that. Hallelujah.

This week I am mostly attempting not to injure myself or get bitten.

I’ll let you know how I get on.

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The Drugs DO Work – But Why Do Humira Injections Hurt Like The Worst Kind of Hell?

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

If you’ve read the book, pleeeeeease hop by Amazon and leave a nice review. If you enjoyed it, that is. Thank you.

Right, so I promised I wouldn’t take so long to write the next installment of my silly life, but I broke my promise. I don’t know where the time goes; really I don’t. Humira, then. For those of you you wondering what that is, it’s not a brand of Japanese car (come to think of it, it might be. I haven’t checked), it’s the biological drug I switched to at the beginning of April. I went into detail about why I switched after a decade on Enbrel, a similar biologic, in my last blog. I also talked about how apprehensive I was about switching. It turns out that so far, it’s probably one of the best decisions I’ve ever made (aside from saying ‘Yeah, OK!’ to Gautier when he proposed to me, drunk out of his French mind back in 2007).

Gautier, yesterday. Maybe

‘Marry moi!’

My new rheumatology nurse specialist couldn’t understand why I was still being prescribed a drug which wasn’t working. I mean, it was working up to a point – I could walk most days and had far less pain, generally, than I did before I started taking it – but I could count only around 20 pain-free days during the past year, a calculation which was met with a gasp from the nurse and a kind of ‘Right-that-doesn’t-sound-good-when-I-say-it-out-loud’ face in return.

It was at that point that I realized I’d been a bit hard-done by. Any rheumatologist worth his salt would have suggested I switch years ago. Of course, having one 20-minute consultation a year – that’s right, one a year – doesn’t give them much time to work out that there’s something strange afoot. They don’t have time to read their patients’ notes before they sit down, so at least five minutes of the appointment is spent reading the latest blood results and saying ‘Right, what is it you’ve got again? Remind me.’ The first rheumatologist I had would start every appointment with the sentence, ‘So how are you getting on with the bag?’ He was referring to my ileostomy but I hated that he called it a ‘bag’. I’d say, ‘Actually, I haven’t got it anymore, I have a J-pouch. I didn’t have it last time I came in either, nor the time before that.’ Consultants can’t possibly remember everything about their patients’ health; they’re over-worked and we’re on this target-lead conveyor belt where the only phrase which links us all is ‘Next!’

I got told by the next rheumatologist that I needed to ‘get used to the idea’ that I would always be in pain. To that end I was supposed to have some kind of counselling from a psychologist at The Pain Clinic, but someone must have put the referral letter on the wrong pile because a year later, when I chased it up, nobody knew anything about it. Brilliant. Obviously by that time I’d talked myself into it and was resigned to the fact that at some point, I would probably opt to take my own life, because being in pain every day is not only mind-crushingly exhausting, but equally, really boring. Existing is not the same as living, and anyone in chronic pain will tell you that. We lose so much, bit by bit, month by month until there comes a point when we have nothing left with which to fight, or nothing left worth fighting for. I could sense that the consultant was more than ready to leave those four walls with their posters of the inner-workings of the spinal cord and get out on to the golf course; after all, dealing with the likes of me, with my incurable illnesses and barrage of questions can’t have been much fun.

Here’s the thing, though: when I asked about switching treatments, he shrugged and said, ‘It’s up to you.’ When I asked questions such as ‘Have any of your other patients switched? What is the success rate for that? Might I get side-effects I haven’t had on Enbrel? How long would I have to stop taking Enbrel before taking Humira?’ and stuff like that, he said, ‘I don’t know,’ ‘I’m not sure’, or ‘Maybe’. Seriously. If he genuinely didn’t know the answers to my questions, who did? How can he be in a job where he’s prescribing these drugs to patients but has no idea how they work? I was like, ‘Say WHAT?’ So the nurse convinced me. Good for her. I’ve waited 15 years for someone who could help me to actually help me.

My new rheumatology nurse. Maybe

Good nurses are brilliant, always have been

I asked for the Humira to be in pen-form, rather than syringe. I was fine with the injection for Enbrel and jabbed that needle in my thigh twice a week for 10 years like nobody’s business. I couldn’t even feel it most of the time, unless I hit a blood vessel. I liked the idea of the pen being much easier to travel with than the plastic cartons and you can line them up nicely in a little travel case because they take up way less room. I read all the instructions and decided to give it a go in my stomach. I’d never injected here, as I have so much scar tissue from my colectomy and J-pouch surgery. I held the pen, poised for action, pressed the tip and BAM!

Me just after the Humira pen burst into my stomach

Me just after the Humira pen burst into my stomach

ERMAHGERD IT HURT. The force of it was nuts, I felt like I’d been stabbed with a Biro filled with molten lava. It actually made me cry, and that’s not something I do very often, unless I drop my ice-cream or think about the end of Top Gear. I had no adverse reactions other than screaming my head off and crying. At the time I was in a lot of pain as I was at the back end of just having sold the house and sending its contents to France. My stress levels were through the roof, and I felt so rough I could barely walk around the house, let alone go out, for the first 12 days after arriving at my parents’ house. Fun times. Anyway, I started to feel better by the second dose, two weeks later. Again I pinged it into my stomach, again I screamed and again I cried. Really. I couldn’t figure out why it hurt so much when needles have never been an issue for me (unless someone is waving one in front of my eye, say). By the time I was ready to leave for a couple of weeks in France, I had requested that my prescription be changed back to the syringe.

Me with the Humira syringe. I need to get out in the sun, I think

Me with the Humira syringe. I need to get out in the sun, I think

So I get the syringe option now, and think, ‘Ha! I know you! You don’t hurt!’ but guess what? ERMAHGERD IT HURT. I didn’t scream, because the process wasn’t sudden like it is with the pen, but I actually thought I was going to pass out with the pain. I was properly sobbing with the pain. It was like injecting acid into my leg. Gautier looked up from the iPad and said, ‘Monkey, are you OK?’ as beads of sweat popped off my forehead and I apparently went as pale as talcum powder. This was 10 seconds of extraordinary agony as opposed to about three seconds of it with the pen. ‘This hurts just as bad!’ I cried, through a face full of hot tears, grimacing like someone who’s just discovered a rotten corpse in their bed. I drank a glass of water, stood up and then poured myself a glass of wine and drank that.

I’m due to inject again on Monday, and I’m properly dreading it. It must be something to do with the formula being pre-mixed, because with Enbrel, you have to put the powder in with the saline to mix it first. I’ve no idea why that’s the case, or whether I’m just going soft in my old age, but man, it’s awful. Thank God it’s only once a fortnight, but gearing yourself up for super pain isn’t easy. A bit like when the bloke who got stuck in the rocks in the American desert for 147 hours or something had to cut his arm off with a blunt penknife (if I said that out loud to Gautier, he’s say this: ‘Yes, monkey, it’s JUST like that. My God.’) I’d be interested to know if anyone else has made the same switch from Enbrel to Humira, and if they noticed the difference. I’d also like to be sent some edible gifts from anyone who hasn’t had to even consider taking biologics in the first place, because that means you’re really lucky, and I’m not. Seems fair, no?

The thing is, two months in and my pain has improved by miles. I’m waking up feeling COMFORTABLE. If you have scoliosis and spinal arthritis and fibromyalgia, you’ll know that it’s nothing short of a little miracle. I want to laze in bed all morning just because the level of pain I was in for the last 15 years meant I couldn’t wait to get out of bed, as the lack of mobility made everything worse. So that’s my news. I’ve got loads more, but I wanted to focus on that for now.

My tummy stuffs aren’t doing so well, which is a bit annoying as Humira is the treatment of choice for IBD. Gah. I’m in France at the moment, typing this on my laptop in the giant garden, sweating buckets despite being in the shade. It’s going to be between 32 and 38 – yes, 40 – degrees (that’s Celsius, by the way) over the next week. My stupid feet are already swelling up at the thought of it, and it’s only day one. Plus I fell on some rocks the other day so one of said balloon feet is all scraped, too. More on that next week; trust me, it’s quite a story. Have a lovely week, everyone. It should be gloriously sunny wherever you are, as long as that’s not Australia, Alaska or the Antartic. All the places beginning with ‘A’ apart from Andalucia, Africa, America… you get the idea. Bisous xxx

Remember, Remember, I Really Hate November

 

Cover Jpeg

To buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

I had forgotten how much I hate November. I don’t know why I’m surprised by how I feel when it comes along, but it seems to be worse with every year.

On 2nd November 2001 I was admitted to hospital with what turned out to be toxic megacolon. It took five days before doctors realised that I was dying. I lay in the hot, sticky hospital bed listening to the fireworks going off all around me, wishing more than anything that I was standing in the park with a toffee apple and a sparkler watching all the beautiful colours explode against the dark sky. Fireworks are used at the end of celebrations – at weddings, on New Year’s Eve – and yet here I was, miles away from my family whispering ‘Help me,’ at the nurses passing by, a futile exercise if ever there was one, while all the whooshes and whistles and explosions suggested togetherness, joy and excitement. It would be like letting off a party popper at a funeral – highly inappropriate and very upsetting for everyone.

Fourteen years later and I still feel the same. I suppose it’s like mourning a loved-one; there’s no getting away from the reminders. It’s not just the fireworks, it’s the smell of November, the sudden change in the weather, the drop in temperature which just seems to come out of the blue. The sky changes colour, the air has this kind of thickness to it… it even smells different. I can taste it, this metallic tang which sticks to the back of my mouth and makes me want to throw up. November is the month where everything good has gone: the leaves on the trees, the flowers in the garden, the sunshine… to me it seems fittingly bleak. It represents unwelcome change and loss, which is exactly what I went through all those years ago. Nothing good came of it. I almost died. The second operation almost killed me. The third operation, the only one which went well, took place exactly a year after the first one, to the day. What are the odds of that? And that’s not all. My mum’s mum died in November. I was nine years-old when she passed away; my brother was just a few weeks old; my mum was six years younger than I am now. My nan had bowel cancer; twenty years after watching her slip away my poor mum watched her daughter dying as her diseased bowel failed her, too. I hate November, as much as you can hate a month for anything, and I think my body knows it, too.

This week I have endured more pain than I have in a long time. Well, that’s what I thought, until Gautier reminded me that I always have ‘trouble in November’. I have had such excruciating pain down my right side, from the ligaments in my groin affecting my ability to walk to such acute pain in my neck and shoulder that I felt physically sick. The cartilage and bone is painful to the touch; I feel as though I’ve been thrown from a horse. I have pain from three conditions – ankylosing spondylitis, scoliosis (not just one, but two – lucky me!) and fibromyalgia. I would say that the pain just blurs into one, but I can pinpoint exactly what condition is causing every bit of pain. Now I’m not good with opiates, they’ve always made me sick, but here I was with the pain so bad it was making me sick anyway so I took them. I have liquid morphine, dihydrocodeine and various other pain-relieving stuff to get me through times like this, but I can’t bear to take them. In the end, I did. This is on top of the anti-TNF therapy I inject twice a week, and all the other stuff I throw down my throat to attempt to keep my intestinal ulcers from multiplying and my inflammation levels down. Here’s just a bit of it:

Yes, the Chanel is medicinal. I don't drink it, but no matter how awful I feel, I put some on

Note the bottle of Chanel. Even when I feel at my worst a spritz of perfume is top of the list

The pain was a little better, but the nausea got so bad I couldn’t stand it. I couldn’t sleep, I couldn’t get comfortable in any position (no change there) and I couldn’t even dress myself. I just wanted to cry. Gautier and I don’t have the best social life, as you can probably imagine, but we had planned on a nice seafront walk and a trip to the cinema this week. We didn’t manage either. I spend half my life making plans and the other half cancelling them. I’ve left the house twice – once to pop next door to cuddle Cookie and let him out for a wee (Cookie is a dog, by the way) and once to see the sheep which are grazing behind our house.

Yes, you read that correctly.

We have sheep grazing behind the house. I’m mad about sheep. I love them. They’re only here for a little while and I insisted that despite the dizzy spells and problems with my leg, I needed to go. We went. They were lovely. They all had tails and although they refused my offer of fresh vegetables (yelling ‘HELLO! DO YOU WANT SOME CAULIFLOWER?’ seemed to make them a bit uneasy) it was half an hour very well spent. Here are said sheep. Lovely, aren’t they?

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Me: ‘HELLO! DO YOU WANT SOME CAULIFLOWER?’

 

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‘Got any chips?’

The only nice thing about November is how the leaves look for about a day, before they turn to mush

The only nice thing about November is how the leaves look for about a day, before they turn to mush

 

So it’s taken me a week to feel able to write this blog, and I’m not out of the woods yet. I know it’ll be a few days before I feel able to drive – and my definition of ‘able’ is not the same as most people’s. If my arm doesn’t snap off, I consider it safe to drive, even if it makes me cry. Really. I so much wanted to see the poppies at the Tower of London, but I can’t see that happening. We hadn’t been before now because in all honesty, I’ve felt really rough for about three weeks, and I didn’t fancy being swept up in swathes of tourists and being stuck in a massive crowd. I don’t like crowds at the best of times, but when I’m in a lot of pain, I can’t think of anything worse than being jostled or unable to get to where I want to go. Being sick makes me feel so vulnerable; how many times have I been crossing the road only to find that the driver of a car or a lorry doesn’t slow down, but expects me to speed up? How many times have I frantically waved my arms to say, ‘STOP!’ because I don’t walk with a stick, I’m not in a wheelchair, you can’t SEE that I’m in pain so you just expect me to run? The same would happen in a crowd; nobody would know that bumping into me would leave me doubled-up in pain; nobody would know that having to stand on the tube is my idea of hell; being squashed, being told to ‘move down’ when there is nowhere to move to, trying to hold onto something so high above my head that I can’t reach it to steady myself because my arms don’t go over my head… nobody knows but me. Well, nobody but me and the thousands of people out there with ‘invisible’ illnesses who show no outward signs of the pain we’re in. I know I’m not alone, but it certainly feels like it sometimes.

So right now I have no choice but to stay home and wait it out. I want to end on a positive note, though. Last week, before I couldn’t go out, I went shopping. I bought some hair dye, some thermal socks, a nice jumper (mum will be pleased as it has a big neck bit to keep me warm. I have a habit of having a bare neck and then complaining that I’m freezing cold) and a new hat. I then found a nice cardigan in the charity shop AND three books. I love buying second-hand books, it’s my absolute favourite thing to do.

Other than to visit sheep.

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My new hat – it looks like a monkey’s bottom!

 

books

Some books, yesterday

 

It Takes Two To Make A Thing Go Right

Cover JpegTo buy the paperback version of my book, click here

To buy the Kindle version of my book, click here

Righto, I’m so late with this it’s untrue. You’d think I’d been kidnapped or fallen down a well or something, but I hadn’t, it’s just been a bit mental and stuff. More on that another time.

I thought I should just write a little update on my last appointment at Guy’s hospital – the appointment I had to fight so hard to get, remember? Well, when you have inflammatory bowel disease and ankylosing spondylitis and all that kind of stuff, you don’t very often get actual good news. Nobody’s come up with a cure yet (lazy scientists!) so until that day comes, it’s never going to be good news. What it might be (aside from dreadful news) is OK news, and OK news can go from ‘just OK’ to ‘actually brilliantly OK’ depending on a) how it’s delivered and b) who delivers it.

On this occasion Gautier and I were shown into the office of a consultant we’d not met before. Alarm bells rang as I thought, ‘Please don’t let me have to go over my entire IBD history again, ugh’ but they soon ground to a halt when said consultant smiled and said, ‘I can see you’ve had a bit of a crap time with your health, Juliette. Let’s see what we can do to make things better.’

80-ball-bingo
Seriously, that’s a good start. He’d not only read my notes (something which NEVER happens at the hospital in Brighton; they always ask me about my stoma, for a start, which I haven’t even had for 12 years), but he understood that my health issues are not only complex but that the level of care I’ve received up until now hasn’t been – how can I put it? – up to scratch. I immediately let my guard down and let him do his stuff. It turns out that my usual consultant had decided that a second opinion would be valuable in assessing my course of treatment, and at the end of a nice discussion about it all, in popped said other consultant. They both agreed they were ‘on the same page’ with it all and that whilst I was not in any pain from what might or might not be Crohn’s disease, it’d be best to treat the inflammation and ulceration gently rather than shove steroids or other nasties down my throat (which is what the advice was from Brighton, along with telling me not to eat food for two months). Yes, that. Slow clap, etc.

So, I’m back on the VSL#3 pro-biotic stuff which tastes and smells like baby sick (actually, I’ve never tasted baby sick, other than when I was a baby being sick, but I think it’s so horrible that I remember what it tastes like. As will my poor dad, for I was once violently sick in his beard late one evening in 1972. He shaved it off soon after that. Can’t say I blame him.

P1020795Anyway, I don’t care how rank it is, it’s good for me. The ulceration hasn’t got any worse during the last six months, so they’re going to have another look at my innards in spring to determine whether or not I need to switch anti-TNF therapies to one more suited to treat IBD than ankylosing spondylitis. It’s a massive deal, even the idea of switching biologics because the one I’ve been on for the past decade works really well for my pain. I came off it last summer and endured the worst hell imaginable before going back on it as fast as I could.

When we got home I sent the new consultant a copy of my book and a thank you card with a shark on it, along with a letter explaining that since being under the care of Guy’s I’ve actually felt respected for the first time. I’m spoken to as though I have a brain and knowledge of my own diseases, which I do. We had an actual discussion, rather than what’s always happened in the past – a consultant looking bored the minute I sit down, who hasn’t even read my notes, who has a ‘one disease fits all’ attitude to treatment. They never acknowledge that I also have AS, they just seem to read from a sheet of paper which says ‘IBD – stop eating, take steroids, go away’. So the upshot of it is that my innards aren’t very well, but we’re treading gently. If the ulceration progresses, I’ll need to do something drastic, but right now I’m just thankful that after 14 years of feeling as though I’m fighting not just these diseases but also the medical profession, I’ve finally got not just one but two consultants who genuinely seem bothered about whether or not I live or die, and that’s what makes OK news into great news.

boom-comic-pop-art-art-print-poster

Death by Crohn’s Disease, Shark Attack or Volcano?

My book is available from Amazon (worldwide) as an eBook or paperback. Here’s the link to the Kindle version; if you’d prefer a book made of paper just type the title in under the ‘Books’ section and it’ll pop up. Magic!

Mostly Cloudy, With Some Bright Spells

So, I’m still thinking about my bucket list.

I thought I had some really mental ideas and a few sensible ones, and was quite pleased with how it was shaping up. Then I thought about how much pain I’m in and I realised that even the ideas I had imagined were sensible are, for me, actually mental. Because all the things I want to do involve not just leaving the house, but leaving the country.

All I ever wanted to do was travel. As a child in the ’70s my best friend Jacki and I would ride our bikes round and round the cul-de-sac we lived in, pretending that we were cycling to Australia. My mum would send us off with an apple, a packet of Um Bongo and a Penguin biscuit and we’d amuse ourselves all day, literally going round and round in circles until we were called in for our tea. At one point I lost a tooth in my apple and still kept pedalling, blood pouring down my chin and part of my jaw in my snack, but I didn’t care, I was GOING TO AUSTRALIA. Come to think of it, after drinking Um Bongo it’s no wonder I had too much energy and no sense.

Um Bongo used to make me go bananas!

Um Bongo used to make me go bananas!

It was no surprise to my parents that when I hit 17 I applied for a Green Card to work in the USA. I wanted to work as a secretary in an advertising agency in New York. I dreamed of meeting Cagney and Lacey, or even just one or the other. I didn’t get the Green Card in the end, which is probably just as well; I’d probably have been killed by a mugger or a taxi within two minutes of getting off the plane.

Instead I got a job in an advertising agency in London. It was a pretty good second best. When I was 19 I decided I wanted to really see America. I saved up my salary and found a travelling companion through an advert in a magazine. I’m not kidding. He was 21 years-old, handsome and a Tottenham fan. He was also a complete stranger, but I reckoned on him being as safe a bet as any. We travelled around the east coast of America for almost three months; starting in Florida and working our way up to New York (we stayed at the YMCA. They lie in the song; it’s really not fun to stay there at all) and then Chicago. We’d planned on staying in grotty motels but when we saw the grotty motels – moreover, the hobos and hookers who inhabited them – we decide to upgrade. I remember ringing my parents once a week from a pay phone to let them know I was still (just about) alive. In an age with no email or mobile phones they must have been out of their minds with worry the entire time, and I still haven’t forgiven myself for what I put them through, even if they say they’ve forgiven me (I think they’re lying).

From then on all I wanted to do was have adventures. I took two trips to Thailand and three trips to the States (driving through Los Angeles, San Francisco and Las Vegas at 21 years-old with my best friend. We also drove through Death Valley. With no water. Really). Aged 18 I flew off to Dallas to spend three weeks with an American girl and her family whom I’d (purposefully) befriended when she attended my school for a year. Suffice to say, my desire to live and work on another continent (not Africa, though, ugh) never waned. Even my relationships were long-distance. I was never going to settle for a job, a boyfriend or a life in the town I grew up in; I always felt was destined for bigger things.

This is Dallas, that's where I went when I was 18. The girl I stayed with was the niece of the actual owner of Pam Ewing's house. Fancy that!

This is Dallas, that’s where I went when I was 18. The girl I stayed with was the niece of the actual owner of Pam Ewing’s house. Fancy that!

When, aged 27, I was sent to cover the Grand Prix in Melbourne for Loaded magazine, I decided there and then that Australia was where I wanted to live. When I got back to London I contacted some magazine editors in Sydney and told my friends and family that I was planning on leaving the UK as soon as I had some freelance work or a features desk job set up.  Mum and dad said, ‘We knew it,’ and I said, ‘Yeah, but you do realise that I might not come back?’

Those of you who have read my book will know that years later I almost went to live in a Florida trailer park with a man I met for 30 seconds in Las Vegas. It’s fair to say that I’m reckless, impulsive, overly-optimistic, massively naive and at times, completely stupid, but I’ve always thought that I’d only regret the things I didn’t do, reasoning that if I didn’t like a place or a job or even a husband, I could always undo things and go home.

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It might have worked out OK… well, maybe not

I have no doubt that if I hadn’t been diagnosed with ulcerative colitis shortly after making the decision to move to Australia, I would be wearing Factor 150 sun block whilst feeding my pet komodo dragons and kangaroos in a sunny garden in Sydney.  It wasn’t just the diagnosis that turned my life upside down; it was the speed with which I was then crippled by Ankylosing Spondylitis and, within 12 months, having emergency surgery for toxic mega colon, waking up to find myself with an ileostomy that I hadn’t bargained for.

I have been in pain for 14 years – give or take a few good months in the early days of treatment – and I’ve been on immune-suppressing biological therapy for a decade.  I take crazy pills for brutal insomnia and, if I’m really honest, (functioning) manic depression, along with a cocktail of supplements, potions and painkillers. My life revolves around MRI scans, colonoscopies, X-Rays, blood tests, stool tests (ugh, I know) and gastroenterology, rheumatology and doctor’s appointments. It’s easy to see why I never made it out of the UK. I’m bound by my drug – I’ve yet to find out how the hell I would obtain it in another country without paying £12,000 a year for it – and bound by my lack of work (for every book I sell I make just £2.71) which is caused, of course, by me being ruled by these conditions.

Took me three years to write and I make £2.71 per copy. Good times!

Took me three years to write and I make £2.71 per copy. Good times!

I often hear people say, ‘I won’t let my disease beat me!’ triumphantly and resolutely, as if we are in control of diseases, rather than them being in control of us. In turn, people praise them for being ‘brave’ and ‘positive’. I’m all for that, and I’ve been saying it myself for over a decade, despite IBD almost killing me, but if you have several life-threatening conditions rather than just one, the odds are that those diseases will eventually beat you, no matter how brave or inspiring you are. I’ve never given in to my conditions, never spent the day in bed even when I’m in agony or when I feel on the verge of tears 24/7. I’m the most ‘can do’ person you’ll ever meet, despite often crippling pain, but I’m sure as hell losing the battle lately and there’s not a single thing I can do about it. My diseases ARE beating me. It’s a fact. It’s like saying, ‘Ha! I won’t let leprosy ruin my chances of becoming a world-class pianist!’ and two weeks later, after your fingers have fallen off, someone says, ‘How’s that working out for you?’ and you saying, ‘Yeah, not great’.

One after another, every life-threatening condition I have has taken a chunk out of my dreams. I lost my career to it. I lost my colon to it. I lost the ability to dance, to eat the food I love, to travel, to sleep, to even sit comfortably on the sofa. Bit by bit, year by year, something else is taken from me. I barely recognise myself from the person I was 15 years ago; then I was at the peak of my career, about to start a new life on the other side of the world, and now I’m essentially a reluctant housewife struggling to get recognition for my writing. These diseases are relentless in their pursuit of me, tireless in their determination to stop me from doing the things that I not only love, but seriously NEED to be doing to say that I am living, rather than simply existing.

I have spent the past 14 years in pain, both physically and emotionally, clinging on to every last shred of hope that I would stay on top of things, that I could keep a lid on it all. I had heart surgery at four years-old. I’ve had my bowel removed. I have scoliosis which is getting worse year on year; I have fused discs and crumbling discs and wearing-away hips. I have fibromyalgia, and now I have Crohn’s Disease. I’m more terrified than ever.  I know that I’ll probably have to have my J-pouch reversed and have an ileostomy again. Not only did I never come to terms with the ileostomy from a physical point of view (it repulsed me so much I cried every single day for nine months) but my skin was so sore from the glue on the bags -I had angry, weeping blisters topped off with burnt skin from the spray needed to remove the glue from the bag which I was allergic to in the first place. I can’t go back. I can’t live like that, with pain from every part of my body; my skin, my muscles, my bones… I can’t. Then again, how can I avoid it?

‘I could actually do with being hit by a piece of debris from a plane crash, or falling into a fire pit, or down a well, or being attacked by a polar bear, or standing next to a volcano as it erupts,’ I said to Gautier last night.

‘Don’t be silly, monkey,’ he replied. ‘Don’t say that.’

It’s true. A freak accident would be a blessing. It would get things over with. It would actually mean that these conditions didn’t kill me, something else did, and in that sense, I’d have won. I’d go nuts to have King Kong or Godzilla descend on Brighton and scoop me up, then drop me from a great height into the sea. Maybe I could go on a balloon ride and just leap out, or do a dive in a shark cage and just open the door and say, ‘Come and get me, f*ckers!’

shark_1236595c

So yeah, that’s where I stand at the moment. I think you can safely say that I’m ‘not in a good place’ in the emotional sense. Put it this way, I put my pyjamas on when I came in and it was only 2.14pm. Gautier’s gone to France for 11 days, so it’s just me, Pantouf and Squeaky. Plenty of time for me to work on Plan A – The Bucket List (clues: Italy, new hair, trousers, tarantulas) and once that’s done, Plan B – stuff about funerals. Before you say, ‘Don’t be so dramatic/don’t be daft/you’ll be fine, remember this: I am riddled beyond belief with four life-threatening conditions; my body is failing me as is, finally, my will. Judging by the rate that my remaining intestine and vertebrae are disintegrating, I have no way of winning this one, even with all the PMA (that’s ‘Properly Mental Attitude’) in the world.

Trust Me, I’m a Doctor

My book is available from Amazon (worldwide) as an eBook or paperback. Here’s the link to the Kindle version; if you’d prefer a book made of paper just type the title in under the ‘Books’ section and it’ll pop up. Magic!

Mostly Cloudy, With Some Bright Spells

Good news, for once: I had a very positive appointment with the gastroenterology consultant at Guy’s Hospital. He wants to get me in for another sigmoidoscopy – oh, the joy! – and more biopsies and blood tests and maybe even an MRI, possibly even a lobotomy *maybe not a lobotomy*

After 15 years of misdiagnosis, neglect, flimsy, non-committal answers to my questions, shrugs of shoulders and a general ‘pffft’ attitude to my treatment, I’VE GOT A CONSULTANT WHO CARES. Not only that, but he really knows his stuff, listens to me, understands why I’m so scared about anything going wrong with my innards and actually managed to make me feel a little more at ease about this whole Crohn’s business. Not that it’s going to be in anyway easy, or fun, or anything like that. It’s just that being under the care of a consultant who gets stuff done quickly, who is thorough, who links one disease to another (in the case of ankylosing spondylitis and IBD) rather than deals with a solitary condition, and who has a firm handshake, well – that’s a game-changer.

Actually, it’s nothing short of a miracle.

This is what happens when they run out of hospital gowns

This is what happens when they run out of hospital gowns

I have already been booked in for my second appointment (camera bum). This time I will have some sedation; I have learnt my lesson. A tube going 27 centimetres into your small intestine does hurt. Meanwhile I see the consultant in Brighton the week before that. At last, stuff is happening, and it’s happening so quickly I feel as though I’ve gone private. Seriously.

I’d really be interested to know how other PCTs and gastroenterology/rheumatology departments differ around the country, and indeed the whole wide world. Having someone who really takes control of your ill health makes all the difference; if I’d been under this consultant’s care 15 years ago I would never have ended up almost dying from toxic mega colon. Not on his watch.

Misdiagnosis is one thing; diagnosing a disease then doing nothing about it is another. The ambivalence of some doctors is astonishing; I changed my rheumatologist after a decade of him shrugging at me every time I asked him something or challenged the standard response of ‘Let’s try you on steroids’ (yeah, let’s not).

The right care makes all the difference. It instills trust and confidence which is so important to us patients. It’s taken a long, long time to get there, but at last, I’ve got confidence in the NHS. When your life is literally in their hands, it can mean hope over despair, and that’s pretty vital. I just wish I could clone this consultant for everyone else with IBD.

More next week – that bucket list is coming!

‘You’re Gonna Need A Bigger Boat…’

‘You’re Gonna Need A Bigger Boat…’

My book is available from Amazon as an eBook or paperback. Here’s a link to the eBook version; if you’d sooner have a real book, just type the title into ‘Books’ and up it will pop!
Mostly Cloudy, With Some Bright Spells

Last summer, out of nowhere, I decided to start planning my funeral.

That’s right, my funeral. For when I die and stuff.

I reasoned that realistically, with all that’s wrong with my insides, I might get another 10 years on this planet before my body completely gives out on me.

That week I also began thinking about my ‘bucket list’ – you know, the things to do before you die. I thought it might even be my next book; seeing if I could do them all in a year and writing about each one as I went. I was weirdly upbeat about it all. It was quite odd.

At Christmas, when Gautier’s mum and stepdad were here, we talked about us all moving to the South of France (it’s not as crazy an idea as it sounds, what with them all being French). We talked about how my health might improve if I was eating nice food in the sunshine, swanning about in kaftans writing books and tending to fruit trees and the like. We set the wheels in motion there and then. I broke the news to mum and dad, had our house valued, looked into the French healthcare system and Gautier and his mum talked about business ideas. We were all systems go. I couldn’t have been more excited.

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Then I went to the hospital for my bi-annual sigmoidoscopy and everything changed in an instant.

I saw the unmistakable white splodges before they did, and I froze.

‘You have ulcers in your ileum’ said the nurse, twisting the camera about in my intestine (I wasn’t under sedation as I was driving myself to the hospital and back. I don’t like to ask people to do things for me, such as take me to the hospital. It wasn’t one of my best ideas).

Biopsies were taken. I was given no indication of when to expect the results, or what to do or think in the meantime. I walked out through the ‘Corridor of Doom’ – the walkway which goes from the main part of the hospital to the wards on the Digestive Diseases department, the place where I almost died 13 years ago, the place I can’t bear to revisit but must, for appointments like these. I stood at the window, facing the sea. I held on to the handrail and I cried. I mean I really cried, and then I took a deep breath, walked out into the rain and drove myself home.

I made a cup of tea and started looking at medical research online. They pretty much threw two ideas out there for an ulcerated terminal ileum: lymphoma or Crohn’s Disease (http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx)

Immediately, I suspected the first. I had come off my anti- TNF therapy last summer because I was so afraid it was going to cause lymphoma or, as they casually put it on the warning label, ‘other cancers’. I’ve been on it for almost 10 years – that’s a hell of a long time for a drug with potentially life-threatening side effects. Within two weeks I was back on it, unable to put one foot in front of the other without screaming in pain. I had no choice. If it was lymphoma, I would be told to stop taking Etanercept. I put the kettle on again, and while it was boiling I made the decision that I couldn’t stop taking Etanercept, so either way, if it was cancer, I could be dead within weeks. Like, great.

Gautier came home from work early. I cried some more, and he just held me, saying ‘It’ll be OK, monkey.’ I called mum and dad, reluctantly. I couldn’t bear to put them through this again, but Gautier said, ‘They need to know.’

Six days later, with no word from the hospital, I rang my doctor. We went through my blood test results: no sign of malignancies. That was good news. But he was certain the inflammatory levels and ulceration was indicative of Crohn’s Disease, which I’d already prepared myself for. It wasn’t good news, it was different news.

When Crohn’s hits an otherwise healthy person it completely rips their lives apart. When Crohn’s hits someone who already has two auto-immune diseases, who is already in pain every day from degrading discs in their spine and fusing vertebrae, along with a scoliosis bad enough for me to stand to lean to one side and twist to the right (it sounds like a dance, I know), it’s not good. When it hits someone who deals with the pain and exhaustion of fibromyalgia, who has been fighting for 13 years, whose mental state is already as fragile as one of Michel Roux Jnr’s caramel baskets, then you’ve really got problems.

As in: ‘You’re gonna need a bigger boat’ kind of problems. Like this:

http://www.youtube.com/watch?v=8gciFoEbOA8

When friends say things like, ‘But Crohn’s is manageable, isn’t it?’ it makes my diseased blood boil. It’s one more life-threatening condition on top of the other life-threatening conditions I’m already contending with, and this is the worst one of the lot. Those of you who’ve read my book will know that I’ve got more fight in me than a mummy bear protecting her babies from poachers, but I’m tired. I’m really, really tired. I don’t have the strength – physically or mentally – to keep on keeping on. It’s like being punched to the ground over and over again. I’ve been sick since I was 29; I’ll be 42 this summer. With the good days I do get taken into account, that’s around 4,000 days of pain. That’s a lot of pain.

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I’m wonky, thanks to scoliosis. This is me thinking I’m standing straight. I have a scar which winds itself further down my body than is appropriate to show you. I have another scar from my ileostomy closure, plus one which goes from one side of my ribcage to the other, under my boobs, which I’m also not about to show anyone. This is a body which has been ravaged by disease and surgery already. Nice wallpaper, though.

Current treatment for Crohn’s includes prolonged liquid diets to let the ulcers heal (we’re talking months here, not a couple of days), a drug with possible side effects so terrifying I don’t even want to touch the box and then, anti-TNF therapy (which – you’ve guessed it – I’m already on). Finally, fifty per cent of Crohn’s sufferers will end up needing surgery. That’ll be the surgery I’ve already had. Can you see where I’m going with this?

Today I rang the hospital to ask when I might expect an appointment to discuss the biopsy results.

‘Usually around six to eight weeks,’ said a nurse, ‘unless it’s urgent.’

And that just about sums things up: this is the hospital that ignored me until my bowel began to perforate and I needed emergency surgery to remove it. This is the hospital that promised me someone to talk to when I was diagnosed with post-traumatic depression after said surgery, but never got around to sorting it out, and just sent me home. This is the hospital that told me having my bowel removed and an ileostomy would mean no more pain, when in actual fact, the pain was caused by Ankylosing Spondylitis, because I had everything taken out, but the pain remained. This is the hospital that time and time again has let me down when my life has been in their hands.

‘I’d say it’s pretty urgent,’ I said to the nurse, incredulously.

Her advice was to tell me that I should go back to my GP to ask for a referral to the gastroenterology department ‘if I was worried’.

I’m not joking. That is actually what she said.

FOR REAL. It was a bit like this scene from ’30 Rock’:

http://www.youtube.com/watch?v=c4jTRXwsBwQ

I asked to be put through to the IBD Nurse Specialist. I explained my predicament. She was very helpful, and actually listened to my concerns. She is going to discuss my case with the consultants and surgeons next week. She is sending me a blood form and a nice stool sample pot for me to attempt to pooh into. She agrees that my previous history with IBD and current mental state probably warrant fairly urgent attention. She told me that it could take months to be referred to a consultant, so she would see me in clinic and that they’d ‘go from there’.

I shouldn’t have to call the hospital and beg for this shit to be done. If I hadn’t have called today, nothing would even be in the system. Shame I didn’t go on Gautier’s private health insurance when I had the chance. Shame I don’t know a millionaire who would pay for it now. I used to be friends with Ant & Dec; I bet they’d sort me out with BUPA if I could get hold of them.

So, I await an appointment with the IBD Nurse Specialist. I’ve asked my GP to refer me to St. Thomas’ hospital in London, because they are meant to be good at this stuff, and with any luck I won’t have to ring them to tell them how to prioritise patients with existing medical conditions and how to make appointments and stuff like that.

I know one thing: we are not moving to France anytime soon.

I know another thing: I really, really need to start that ruddy bucket list.

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