14. I’m storing up the good stuff…

This past week has been a most excellent week. For the first time in a very long time I feel like I belong to the body I’m in. I don’t hear myself groan as I walk up stairs or wince as I sit. Tiredness doesn’t creep up and knock me out unreasonably at reasonable hours. My counterfeit smile has been replaced with the real deal because at long last, I can see my reflection and recognise it as my own. I’m back.

Lucian Lupus has taken leave. Perhaps he’ll return with a vengeance just to spite my mood, but when he does, if he does… I’ll be ready for him. I’m going to bottle this favourable feeling and use it as a tonic to fight his mighty malaise. I’m bottling this feeling for some rainy day PMA.

The words below are a potent rescue remedy, to be used in cases of emergency. (Penalties for improper use apply.)

****

Look lively Lush, and don’t for a moment dwell on what’s wrong with the world. What possible good can come of focusing on your own ill-feeling and all the answers you don’t have. Look past the time you got ripped off, left out, or made to feel small; that time you were called up first or not recalled at all. Don’t eat food that isn’t completely delicious, just because someone somewhere told you that it’s good for your third intestine. Forget about the texts you shouldn’t have seen, that email you wish you’d sent and the time your heart was shattered into a thousand tiny pieces. Listen to your gut before you listen to advice from strangers, because your gut knows you better than they do. Call mum because she probably knows more than your gut. Don’t lust after snazzy expensive things you can’t afford– they won’t make your cheeks hurt from smiling, no matter how snazzy. Stop wishing it hadn’t happened to you, or could happen for you, or wondering why it happened for them instead. Don’t long to turn back a clock that’s impossible to turn because your life didn’t quite go as your sixteen-year-old self had planned. Your sixteen year old self wasn’t as wise as you are now. Enjoy the plot twists. Eat donuts even though they probably want to kill you, because there’s no joy quite like jam dripping from your chin. Eat fruit too. Don’t turn a blind eye to sights you’d rather not see; be mindful of the bigger picture you’re in. Be kind. Wear comfortable shoes and red lipstick. Be thankful for the friends that love you even when you’ve got nothing funny to say, and forget about the ones who have so easily forgotten you. Listen to Taylor Swift and shake it out. Worship at the alter of Saint Luke who is the slowest cook in London, but will always deliver a wonderful meal in two to three hours (AND wash up.) Laugh at the impeccable timing of a punctured tyre in the rain. Laugh a lot. Smile at people because more often than not, they will smile back and it feels good when they do. Enjoy the warmth of your electric blanket, that’s warmer still because it was an unexpected gift. Steer clear of strangers on Instagram who only ever look tanned, ironed and dead behind the eyes; they may have a beach house in Miami but they have no idea how good the view of London is from the 88 bus. Relish in the bits of your body that are behaving as they should and use them wisely. Use your brain most of all; challenge yourself to use it some more (and when you’re tired, watch videos of the Honey Badger on You Tube). Read words that inspire you and watch Ted Talks about things you don’t understand. Understand that life can be cruel, but no amount of melancholic musings can stop that, or help at all. When your mood turns sour, it’s time to count your blessings and make sure you count them twice. You are responsible for your own happiness and you are capable of finding it, even in uncomfortable shoes and situations. You really don’t have far to look.

****

I’m off to see The Super Doc next week – if he doesn’t tell me that my medication is working, I’ll eat my hat, and his.

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The bright side.

13. Red Lipstick: my weapon of mass deception

Over the last couple of months my friends may have noticed my penchant for red lipstick. Whether it’s accompanying a black silk shirt or tracksuit bottoms, I really don’t care – the lipstick stays on and it’s always ruby red.

I slap it on after a sleepless night. I reapply after puking at the bus stop (my fellow commuters wondering how I’d come to be so drunk at 9am). I sport it because my body is feeling fragile but my lips say I’m fearless (and probably French).

Sometimes I misjudge the boundaries and find it creeping towards my nostrils, and sometimes I forget it’s on and Saint Luke looks like he’s been mauled by an angry mob (or gob). It seeps deeply and defiantly into the ravines of my lips, an Armageddon survivor like a chic cockroach. It’s often out of place, it’s always high maintenance, but I’m committed to the cause because every time I go red, someone will say ‘you look well’. Lush – 1, Lucian Lupus – 0.

And much like a pantomime dame, I do look really rather jolly. Thankfully I’ve managed to forgo the common Lupus rash across the face (a la Seal) marking my days with disease. Instead, Lucian Lupus stays hidden – a devious, duplicitous villain, cloaked in my clothes, skin and bones.

I wonder if life would be easier if I wore what I’m truly feeling like a badge? I’d have one on my back that reads ‘Slow moving human – body hurts.’ I’d have one on my shoes that says ‘please tie me – tricky to bend down.’ I’d especially like one in bold across my chest, ‘temporarily out of order. Maintenance aware.’ On some days I’d like to swaddle myself in Hazard Tape, warning onlookers of perilous obstructions ahead after only two hours sleep.

I don’t want these signifiers to provoke pity, but perhaps a little understanding of what I’m masking. I’ll never be the bore that responds to a courtesy ‘how are you?’ with a list of ailments – no one wants to hang around that person! But sometimes I’d like my auto-reply, ‘I’m really well thanks!’ to come with a few caveats. Namely, ‘I’m normally much more fun. I’d like to say something humorous now but I’m too tired. Of course I’d have a glass of wine if my medication would allow it. I’ve got lots I want to say, but I’m distracted by the aches. I think you’re really funny but it hurts to laugh. I hate to leave early; I’m usually the last girl standing. This isn’t really who I am. This isn’t who I want to be. Please bear with me.’

But it’s not appropriate to whisper in people’s ears and what would it achieve if I did? Would people treat me differently if I came adorned with warning signs? Would people don their kid gloves and feel removed with misunderstanding? That would surely be the worst of the Lucian Lupus curses. The very last thing I need is sympathy to reinforce any self-indulgent pity. On the contrary, I need to be reminded to fix up, look sharp and get on with it.

On goes the war paint, on it goes, taunting Lucian Lupus like a flash of a matador’s red cape. On goes the signage that says I’m bold, brave and far from feeble. On goes the mark of glamour and joie de vivre, on it goes, masking whatever it is I’m trying to hide. So when people ask ‘how are you?’ I’ll leave my red lips to do the talking, without having to say a word.

*****

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Pucker up, it’s show time.

12. Miles Davis and the Mexicans

My weekend began with a text to Saint Luke; ‘I’m 79% sure I’m having a heart attack’. I wasn’t, a chainsaw had just taken residence in my chest. I crawled into bed and was surprised when a family of Mexican neighbours arrived to wish me well. I was grateful that they’d come, all eight of them, but as they sat awkwardly on my bed I felt terribly self-conscious and the small talk was dwindling. I shouted to Saint Luke for back up, concerned that no one had offered these poor Mexicans a drink! But he wasn’t there and neither were the Mexicans, so I fell back into a fevered sleep.

Saint Luke mused on the ‘best-laid plans’ for our weekend that were promptly cast aside, whilst I wrestled with the aches in my body, the chainsaw in my chest and the Mexicans on my bed. My dad gently suggested, ‘perhaps you’ve overdone it this week?’ If overdoing it means racking up copious lines of kale and raving (reading) until 8pm, then YES I’d overdone it. ¡Ándale! ¡Ándale! ¡Arriba! ¡Arriba! Somebody stop me!

And so it came to pass that I should learn another solemn lesson; I simply can’t make plans, no matter how modest, not even best-laid ones. I spent Saturday sulking in bed, wondering if there’s anything more pathetic than crying over a lost trip to the supermarket. I used to be fun. I used to be a contender! The most frustrating thing is not being able to predict when I’ll be visited by Lucian Lupus, or Mexicans, because there seems to be no warning, not even a courtesy call. How rude!*

Last week I was thrilled to have accomplished five days of work with relatively manageable pain, as long as I kept my inner tempo tuned to soft jazz. This is no easy feat for a girl who opposes the sedentary beat she has to keep**. You see, because I’m upbeat and excitable by nature, I often forget myself at work when we win a new job, or someone tells a hilarious joke or reveals a most wonderful sandwich, only for my body to be thrown back down by a chainsaw. My natural and forced rhythms are constantly at odds; it’s like an experimental jazz battle in there (with brief interludes from the Texas Chainsaw Massacre.) So perhaps I should have predicted the fall out at the end of last week, which left me surrounded by Mexicans and in a lot of pain, just like Miles Davis***. And maybe my dad was right (he tends to be) and I did too much. And maybe I brought it on myself. Damn that natural funky rhythm of mine!

But where does that leave me? I don’t want to slow down the up-tempo beat that makes me, me. I don’t want to walk instead of run, smirk instead of smile, titter instead of laugh with my head thrown back. I don’t want to dampen my spark any more than I’ve already had to, because I’m in danger of fizzling out entirely. I can barely recognise myself beneath all the cotton wool, and I’m finding it hard to breath.

Before my laboured beat makes me feel downbeat, I must remember that this departure from myself is Only Temporary. Lupus Troopers, when the music changes, so must the dance my friends. Hang up your sequined trousers, but don’t abandon the idea of ever wearing them again. Leave your best-laid plans at the door and collect them on the way out of this mess. Sit back, relax, turn your electric blanket up to 11, and tune in to soft jazz. Lay down that boogie and play that funky music, until your pills kick in. (And please don’t stress if you’re unexpectedly visited by Mexicans; perhaps they’re listening to the music too).

***

* I’m not suggesting all Mexicans are rude – just hallucinated ones.    

 ** This sentence is also a poem. You’re welcome.        

*** Replace ‘Mexicans’ with ‘New Yorkers’ and ‘pain’ with ‘trumpets’. Now that’s Miles Davis.

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In days of yore, when the sparkly trousers were in action.

11. Let’s all do a medical limbo!

I had an audience with The Supreme Super Doc this week to see if the magic beans he’d prescribed have found their groove. His review was mixed – the groove not altogether groovy. Some great things are happening (applause, whoop) and some bad things are happening (boo, hiss). So I have found myself in a medical limbo, which must not be confused with ‘doing’ a medical limbo, involving bending backwards below conjoined stethoscopes (applause, whoop). On the contrary, I’m ‘in’ a medical limbo, which is rather like sitting in a metaphorical waiting room with no magazines. And in this no-mans land, I can’t beat my chest on bended knee and cry ‘why me?’ I can’t light a slim cigar and huskily sigh ‘je ne regrette rien’. Nor can I spin around on a mountaintop, singing ‘the hills are alive…’

I don’t get to partake in any of the above activities because I can’t be happy, or sad, or Edith Piaf. Instead, I must wait for another FIVE WEEKS, wondering if the drugs are working or if I’ll have to move onto more fearsome drugs. For another FIVE weeks, I’ll be contemplating what my body’s game plan is. Kidneys – are you looking lively? Heart beat – keeping up? Chest tissue – stop being so weedy, your teammates need you now! Isn’t it boring to have become so self-obsessed. I’m quite literally gazing at my own navel, wondering if Lucian Lupus is about to take hold of that too.

I don’t want to be that girl, obsessing over a wannabe Harry Potter villain stealing her tummy button**. She’s the last person you’d want to hang out with at a party! I have to remind myself that the magic beans will work, or won’t work, regardless of the amount of time I spend thinking about them. I have to fill my time with wonderful things I CAN do, instead of dwelling on all the things I can’t. Fun doesn’t have to mean Sauvignon Blanc, skipping and The Macarena at 4am… does it?

The Supreme Super Doc gently advised me to be patient, (apparently he had pre-warned me that this journey would be long, but obviously I hadn’t been listening because my head was busy planning my ‘I’m totally better’ party). So now I’ve got to ‘practice patience’. Gosh. I’ve never been any good at that. I’ve always had a sneaking suspicion that patience is exclusively for people who have time to be patient. Take Buddhist monks for example– they’ve literally got nothing on – no TV series to catch up on, no drinks parties to go to. Their diaries are empty, it’s no wonder they’re so Zen! Perhaps they’ve learnt to practice patience waiting for party invites to turn up? Poor monks. Regardless of my devout impatience, I’ve taken a solemn vow to abstain from parties and commit to kale. I will embrace early nights and green food. I will remove myself from fun scenarios because I simply can’t keep up with them. For now. I will press pause.

So to the Lupus Troopers out there; learn to be patient patients my friends because fighting it won’t speed your recovery. Try not to remove all joy and replace it with navel gazing, because let’s face it they’re not all that exciting to watch. Enjoy the space your medical limbo has offered you. Focus on all that’s great. Take stock. Reflect. Laugh at this nonsense. And rehearse your rendition of ‘the hills are alive….’ Hare Krishna. (Applause, whoop.)

 

**As weird as that sentence is, it’ll make absolute sense if you’ve read a previous blog post. If it doesn’t make sense then you only have yourself to blame. Now, you’ve got a backlog of posts to catch up on dear! Quick sharp. Look lively! 

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Check me out with my green juice! Beat that buddha!

10. I resolve to cover Patrick Swayze in clay

Happy New Year folks! I want to kick-start 2016 with an appropriately positive post about taking the new year by the horns and riding it bare back to Copacabana and home again. I want to list my modest 34 New Year Resolutions, which are usually a variation of the following:-

1: Always wear matching underwear.

2: Join gym (again).

3: Join pottery class – recreate scene from Ghost.

4: Join Yoga studio next to work. Go EVERY lunch-time.

Etc etc…

There’s normally around 30 more, equally self serving, ambitions to join, learn and live adventurously.

I want to start this year with my best foot forward, blindly hopeful and determined, like a whippet at the starting gate (in matching underwear) that has just caught scent of a rabbit. I want to be ready and raring to go. I want to, but I’ve found myself anxiously hanging around the starting line with my tail between my legs. I want to be chomping at the bit with my habitual enthusiasm to skip round the track, but it’s cold and I suspect the rabbit’s going to get away. I want to begin 2016 just as I have previous years.  I want to, but I can’t. This year I’ve got a new appendage hanging on for the ride and it seems to be weighing me down; Lucian Lupus, what are you doing here? You weren’t invited! I don’t quite feel like racing anymore…

I’ve realised that my usual New Year Resolutions are no longer working for me. Wearing matching underwear feels futile when it’s an effort to put any on at all. I need to manage a full day at work before wasting energy covering Patrick Swayze’s six-pack in clay. And surviving a gym session is as realistic as me running a marathon backwards and blindfolded whilst speaking fluent Swahili. (Although this is fairly unrealistic at this time, it’s not altogether unrealistic if I should really put my mind to it. Next year perhaps. Natarajia mbio za marathon nyuma, which means, ‘I look forward to running a marathon backwards and blindfolded’- in Swahili. I’m practically fluent already). I digress…

It’s no big deal really. I just need to realign my resolutions, at least until I’ve found the right medication to curb Lucian’s current enthusiasm. Every day I’ll write a new and more realistic resolution depending on how I’m feeling at the time. I.e. ‘wash your hair without sitting down in the shower!’ Or, ‘remember to take your pills after breakfast!’ Or, ‘Do. Not. Feel. Sorry. For. Yourself. because it’s not like Patrick Swayze was ever actually going to be in the pottery class.’

Admittedly it’s been a fairly disheartening start to the year as I’ve struggled with the mundanity* of lustreless lupus life. But reassessing my list of resolutions for 2016 doesn’t have to mean I’m any less imaginative or determined, I just have to be a little bit more realistic, for now. (FYI. 2017’s list is going to include space travel and a pet monkey.)

So I’m keeping this post short tonight, because my resolution for today is ‘go to bed early, because tomorrow you’re back at work!’

Goodnight fellow whippets. Now get some rest because we’re going to need all our energy to achieve the resolutions we’ve set out to conquer – whether that’s to catch the rabbit, or just to wash your hair. x

*Apparently mundanity isn’t actually a word, but you know exactly what I mean, and I think it’s a perfectly great word. If we all start saying ‘mundanity’ then the clever folks at the Oxford English Dictionary might be really embarrassed that they’ve accidentally missed out a word, and pop it in there. Success! Mundanity all round!… although that doesn’t sound like very much fun.

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I resolve to be good, in moderation.

9. ‘Tis the season for mince pies and morphine

‘Tis the season to be jolly (falalalala, lalalala) even when you’re throwing up on Christmas morning, because having a shower was too much fun for one day (falalalala, lalalala.) ‘Tis not the season to pass on Christmas pudding, so I’ve put my rule book to one side and enjoyed a heady mix of mince pies, morphine and mulled wine (falalalala, lalalalaaaaaaaaaaggghhh!)

And now I’m back in bed, my chest throbbing in distain for the frivolity, I’m wondering if it was all worth it? Of COURSE it was, every last crumb and dance with my niece, every last dunk in brandy butter and roar of laughter. Every crisp, every game, every sip, every hour, every single moment was worth it. Which leads me to ponder (with my head at a jaunty angle and my index finger to my lip), has it all been worth it? Have the last five months offered me anything more than a restored love of almond milk?

Now, I would never wish for Lupus (like I wish for Isabel Marant boots), that would be silly and a little sadistic, but I am incredibly grateful for the refreshed view on life that Lupus has bought me. Lupus is partly responsible for placing my life in a golden frame and saying to me, ‘look at this life you’ve got, you massive lush! Look closer! I know it may be a bit wonky, it may not have turned out exactly as your 15 year old self thought it would, but it’s f-ing bloody brilliant and you are SO lucky.’

Over the last five months, I’ve received enough flowers to host the Chelsea Flower Show and Get Well Cards to fill a forest (if we could magically reverse the paper-making process… sorry trees.) My friends and family have a canny knack of appearing just as I’m close to feeling sorry for myself, with grapes and cakes and the wisest of words; with eye cream and candles, foot rubs and head strokes; with DVDs and magazines and bouquets of fruit (no shit, click on this link, they’re amazing!) They’ve come with herbal teas, juice recipes and an abundance of PMA. They’ve emptied the dishwasher, they’ve made me soup and they’ve made me laugh and laugh (until I’ve had to tell them to stop being so goddamn funny because it hurts.) Blimey, I am SO lucky.

I’ve been reunited with old school friends and boyfriends who have appeared from nowhere to wish me well. Although no longer in uniform or in the band, and despite the years that have passed and the nonsense life has also thrown at them, they’ve hardly changed at all. What an influence on my life our past together has been, and what inspirations they live to be now. I am SO lucky to have experienced them and to be able to rediscover them now.

I’ve had endless support from my bosses and colleagues at Coffee & TV. Working with such a passionate, talented and hilarious crew is the very best tonic (and if it could be bottled we’d all be millionaires! So I’m working on it…) I’m SO lucky to be able to spend my days with such an awesome and energizing bunch.

If ever you need your significant other to prove his / her love for you, remind him every day how much you’re hurting and cannot possibly hoover. Tell him that you can’t go out despite the fact it’s his friend’s engagement party / birthday party / Halloween party / new-born’s christening. Ask for your hot-water bottle to be refilled, despite the fact he fell asleep half an hour ago. Tell him you want the moon and ask him to throw a lasso around it and pull it down. All hurdles are equally demanding and worthy of proving his love. Thankfully, my boy has successfully completed his endurance test; indeed he’s endured an awful lot, and I am SO lucky.

And although it’s surprising to find yourself being tucked into bed by your mum / dad / sister / brother, at the age of 34, (and certainly not what my 15 year old self had foreseen) I am SO grateful. What a privilege it’s been to spend this uninterrupted time with my family – to be cocooned in their unconditional love, with tea and toast on tap. Gosh, aren’t I lucky.

Oooopsies, I appear to have written my Lupus Awards acceptance speech. I’ll stop here (else I’ll have nothing to say in my actual Lupus Awards acceptance speech, a glamorous red-carpet affair that I’m certain my Super Doc is planning). There’s an awful lot more I have to be thankful for, but I’m precariously standing on the edge of the smug zone. I appreciate that not everyone is lucky enough to be surrounded by such incredible people, but I do hope that the frame around your world highlights all that’s good, funny, surprising and wonderful… I promise it’s all there, if you look hard enough.

Numerous people have asked me lately how I remain so chipper; I hope this post shows that it would be very hard not to be! THANK YOU to everyone who has made it so. Despite the hospital visits, the tests, the tears, the aches, the pain and puke, I’m really rather lucky. Perhaps it’s the morphine talking? Or perhaps I just feel really rather jolly – ‘tis the season after all (falalalala, lalalala.) SO, bring it on 2016, I’m ready for you and I’ve got my army with me.

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London Bridge Hospital, feeling festive

8. Insomnia and a Kidney Beret

I don’t care what Instagram says, healthy eating isn’t fun and it certainly isn’t sexy. The truth is, ‘come to bed eyes’ should be more aptly named ‘sauvignon eyes’ because let’s face it, no romance ever blossomed over a wind-inspiring Green Smoothie. No babies were ever made after a playful evening of carrot batons and Wheatgrass shots. No dalliance into debauchery ever concluded with kale. No life-loving, adventure-seeking being ever said ‘hey, you know what’s really fun? Broccoli.’ (Unless of course, the broccoli is attached to the end of a bungee rope, or Snickers bar.) That’s not to say I haven’t tried to be green and lean. Every January I successfully detox for a week, and celebrate with a vat of Pinot Noir and a Chinese Takeaway for four, for one. But for the first time, I’ve got a legitimate reason to try, and I can’t find a legitimate reason not to. And so my foray into eating clean began with a hint of cynicism, a dollop of dismay and four sleepless nights.

The Super Doc (Doctor Lanham at the London Lupus Centre) suggested it was time to stop taking Tramadol because after three months, the stuff was doing nothing for my mojo. He also gave me a trial prescription for steroids in the hope they might encourage my immune system to perk up. Concerned that five days on the ‘roids would inspire immediate beard growth, an appetite for Call of Duty and a penchant wolf whistling, I decided that I should counteract chemicals with pure goodly goodness. I raided Amazon for books with (smug) pretty girls on the cover – they all seemed to be holding a yoga pose and green juice concurrently. Multi-tasking majesties. And their faces (smug faces) shone with the dew of their early morning Pilates, and their eyes sparkled, and their teeth twinkled and their plentiful hair curled like magnificent Unicorn manes. They glowed from their insides out, with livers exquisite enough to be worn as broaches and glistening clean colons that would make the most delightful necklaces. I didn’t just want to look like them, I wanted to be them (or at least wear their shiny organs as jewellery.) And as my salubrious sisters sang to me from their recipe book covers, I realised I shouldn’t have come off the Tramadol quite so quickly.

For FOUR NIGHTS I lay awake, counting sheep until there were none left. My body ached with exhaustion, but how could I possibly sleep when I was so busy re-enacting scenes from Trainspotting? The Tramadol had taken more of a hold than I had thought and the ‘roids were preparing me for a wild night out I was never going to go on. A sleepless haze distorted my days but I was determined to carry on regardless. Getting dressed felt like participating in the Iron Man finals. Commuting to work was a mission to the underworld with Hades on my back. Eating was essential in order to take my pills, but it’s ever so tricky to fry an egg white omelette from foetal position. Life seemed to be getting harder and curly kale wasn’t helping. Narcotics and healthy eating is a juxtaposition Irvine Walsh obviously hadn’t considered when he was writing Trainspotting, which is a shame because I could have done with a point of reference and the glowing girls weren’t helping.

When I found myself waking up on Regent’s Street having fainted amidst indifferent tourists, it was time to head back to Super Doc (with an awesome new recipe for sweet potato brownies.)

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Nothing says FUN like celery! (said no one ever)

7. There’s almost nothing gaffer tape can’t fix

I’ve caught myself applying the three-date rule to doctors. As much as I want to, I don’t give it away until our third appointment, because until then I’m busy trying to convince them to like me. I want them to understand that I’m normally a fun-loving, hard-working, free-spirited, NON- HYPOCHONDRIAC. I begin nearly every appointment with an anecdote about not even flinching when I got my foot tattooed! (I don’t care if the doctor just wants me to get to the point- I got tattooed on my foot and it didn’t hurt me! I’m as courageous as Joan of Arc!)

Now, it doesn’t take a session with Dr Frasier Crane (or indeed a real life Psychiatrist) to work out that this deep routed fear of being perceived as a hypochondriac comes from having spent many years of my childhood as A MASSIVE HYPOCONDRIAC. Actually, I was more of A MASSIVE LIAR.

  • Aged 5 I stuffed a tissue in my eye, long enough for it to go black.
  • Aged 6 I licked my brother’s cup when he had a sicky bug. It worked.
  • Aged 7 I made the Gregory Twins carry me round for an entire afternoon because my legs stopped working. I told them I might never walk again and they cried, both of them.
  • Aged 8 I limped round the V&A with my mum and sister, insisting on wearing a bandage on the outside of my trousers. They had me sussed and left me on a bench, where I looked as pitiful as possible in the hope that passing strangers might think I was a street urchin (albeit it a culturally astute one in the V&A?!)
  • Aged 9 I danced then fake-fainted outside my neighbour’s house, in case he was a Hollywood director looking to cast a jaunty yet frail red head in his next movie. He was a builder.

Thankfully I grew out of this morally questionable hobby, and became an actress so I could lie on stage with a paying audience applauding me for it.

In fact, it was theatre that instilled in me the stoicism of a Second World War Army General, with both legs blown off, pulling his comrades from a burning bunker. When you’re unloading a set from the back of your van at 4am, having just driven five hours following a performance in Lands’ End, there’s no room for wimps. If you’ve cut your finger, you slap some gaffer tape on it. If you tear your cruciate ligament during a rather feisty performance of The Secret Seven, you strap it up and skip the skipping scene. If you sprain your ankle, you juggle cow hearts whilst balancing on crutches. (These were actual bleeding cows hearts, in a fiercely political show about Foot and Mouth disease, a subject we knew nothing about but hoped was outrageously controversial.) If you break your nose on stage in Germany, you stuff it with tissue and pretend the tip of it is just counting freckles on your cheek. Because the Show. Must. Go. On. And thankfully it’s this attitude I have carried with me through life, and not the one that lead me to lick my brother’s cup.

By my third appointment with the wonderful Dr Lanham at the London Lupus centre, I no longer cared if he thought I was as brave as Bouidica, because at this point, my PMA was nearly out. A diagnosis of Systemic Lupus was looming ever closer and it could smell my fear; if gaffer tape couldn’t fix me, I needed to know what could. After an hour together Dr Lanham saw me to his door and said ‘I know how much pain you’re in and you’ve been very brave. We will get to the bottom of this together.’ At which point, I felt the heavy weight of my childhood hypochondria lift from my shoulders. He said I was brave and for the first time, I felt like I didn’t have to pretend to be anymore.

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Look at that badass tattoo… and I didn’t even flinch!

6. Five Dark Days of Sick and Doom

King Professor Santis had warned me that I may develop a few ‘flu-like’ symptoms on the new medication and that I should gradually increase my dosage each day to avoid any adverse reactions*. So I popped them alongside my trusty Tramadol. (At this point I had a steady habit of 8 Trams a day and all was going well – I hadn’t started to pickpocket children or search through bins, or any of the other tricky habits you pick up along with long-term drug addiction.)

Day 1. In an effort to outsmart the Drug Dread, I took it before bed so I could blissfully sleep through the sicky-bit. I was a little shocked when I woke in the middle of the night like Regan in the Exorcist… you know, dry throat, green face, demonically possessed. The bed shook, I spoke in tongues, the words ‘Help Me’ carved into my stomach… (ok, that may not be entirely true, but I did feel really out of sorts.) Luke renounced the devil with a camomile tea and I hoped that the worst was over.

Day 2. The worst wasn’t over. Now, I pride myself in being highly accomplished in the art of ‘pulling off a hangover’. I’m accustomed to brushing myself down after three hours sleep, painting on my face and skipping into work with the joy of Spring, despite being considerably weighed down by concealer and two bottles of chardonnay. I was in shock that one little pill, a fraction of the size of a bottle of wine, could cause so much distress! My head pounded, my eyes stung, I didn’t even want to eat Pizza! NOT EVEN PIZZA!

Day 3. Eve and Faye popped in. We had a three-way foot-rub and watched a bad film. When they left I cried for two hours because they’d been so nice to me. After two hours I’d forgotten why I was crying but didn’t know how to make it stop, so I cried for two more. I was acutely aware of Luke watching me in the same way you watch a moth bash relentlessly against a window, considering how best to put it out of its misery. I asked him to sit in another room in case he tried to squash me with newspaper and flush me down the loo. And then I cried because all I wanted most in the whole world, was to be flushed down the loo. I cried until my head ran out of tears. Oh if only I was a moth.

Day 4. You know that scene in Cast Away when poor emaciated Tom Hanks is crawling around in his loin cloth, chatting insanely to Wilson his volleyball?… Well, that.

Day 5. I dragged myself into London Bridge Hospital for an appointment with the King. On bended knee I begged for his mercy. He scoffed that I should come off the pills immediately (as though I had foolishly prescribed them for myself) and I live to blog another day. Yay!

King Santis mused over my latest test results. “I’d like to refer you to my colleague at the London Lupus Centre.”Oh arses. Lupus? What the hell is Lupus anyway? (aside from a character in Harry Potter?!**) Lupus sounds ridiculous and it most certainly doesn’t sound like anything I want. So you can stick your Lupus, Prof Santis! Laters Lupus! Sayonara Santis!… And what time is my appointment? 

* I know it would be handy for me to tell you the name of the Drug Dread, so that you could avoid it or surreptitiously hide it in the crumpets of your worst enemy – but I immediately threw them away, in case their mere presence should infect my flat with its curse, or I should mistake it for a tic-tac and find myself crying into the washing machine again. Soz.

** I’ve since googled this and I don’t think Lupus is a character in Harry Potter after all, although FYI JK, you missed a trick there, Lucian Lupus would have made a great arch enemy.

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Eve, Faye and loads of lady limbs.

5.The Knight, The King and The Jester

Not having Pleurisy is considerably harder than having pleurisy, because if I don’t have pleurisy then what the hell DO I have?!

“Well it’s not cancer”, the doctor crooned, throwing down his Royal Flush. I spat out my tea, (I wasn’t drinking one at the time, but my mouth did the same action). “Of COURSE IT’S NOT CANCER!” I hadn’t ever thought it was cancer, not for a second, but the moment he told me it wasn’t, I thought it almost certainly was. God I miss Pleurisy. Good old faithful 18th Century sounding Pleurisy. I had a solid relationship with that bad-boy and now it’s left me – left me with WHAT?!

The hospital doctors referred me to a respiratory specialist, who (much like Mr Bean) lost my test results, forgot to schedule my appointment and tell me he was going on holiday for a month (probably with his teddy bear). On hearing this news, my MD* galloped centre stage upon his trusty white steed, a sword in one had and my private health insurance in the other… what a way to deliver an email! Legend. I booked an appointment with Professor Santis at the London Bridge Hospital for the following day. (A Professor no less, like Stephen Hawking and Henry Higgins, but better!**)

I have to admit to feeling guilty for leaving the NHS behind; after all it had done for me. Despite the crisis that looms over its head, wards fit to bursting and purses nearly empty, the doctors and nurses worked tirelessly, with care, dedication and the humility and patience of a Buddhist monk working in the Next Christmas Sale. I have a lot to thank them for.

Professor Santis had the air of a King on a polo horse. I immediately bowed in his presence and apologised for wasting his time. I fought desperately to hold back tears because I couldn’t bear to see the distain on his face at my feminine fragility… he might have me beheaded! So instead of telling him that my chest stabbed with every beat of my heart and I’d taken to fainting in embarrassing places, I danced him a merry jig and sang a tuneful song. He told me there was an area of concern in my CT scan – a small gap in one of the rivers running from my heart where there ought to be blood and that my lungs weren’t functioning as they ought to. So I told a few jokes, jingled my bells, apologised profusely and backed out of his office, relieved that my kindly master had spared me.

Whilst I waited for the second opinion, King Santis prescribed me some magic beans, I mean pills, magic pills. And so began what shall henceforth be known as, ‘The Dark Days of Sick and Doom’. Oh what a noble and magnanimous King. All hail King Santis.

I booked an appointment to see him in again in 5 days, (dark days of sick and doom) and I cartwheeled back to Vauxhall. (Honestly guys, stick around for ‘The Dark Days of Sick and Doom’… it’s going to be a hoot!)

 

*To clarify, my MD is the Coffee & TV Managing Director, not my friend Shane who is a Musical Director.

** Since Professor Henry Higgins is fictional, (and all he really did was manipulate some poor girl so she could sing about the rain in Spain and embarrass herself at the races), I can confidently say that my Proff is better. I have no facts to support Professor Santis’ superiority over Professor Stephen Hawking, but it’s childish to turn this into a competition, so just stop it! (but in a fight, Proff Santis would probably win. Just saying.)

ProffKing Santis of London Bridgeshire