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.

*****

FullSizeRender

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.

FullSizeRender

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! 

FullSizeRender

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.

IMG_8707

I resolve to be good, in moderation.