House of Pain

This isn’t me, it’s a bloke, but you get the idea

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Mostly Cloudy, With Some Bright Spells

In my last blog, I wrote about what I call ‘payback pain’. You know, you wake up relatively pain free (I say ‘relatively’ because I’ve woken up actually completely pain free twice in the past 12 months) and decide to do something nice. You have to seize the moment, right? If the sun decides to come out at the same time as your hips/spine/neck/legs/arms decide not to give you too much bother, then it’s all systems go.

I have three standby plans when this rare phenomena occur:

Plan A: I knock for Cookie, next door’s lovely little Norfolk Terrier. Take him for a rubbishly slow walk in the woods behind our house. Stop at the bench, 5 minutes in, and have a cuddle and a snack (a Babybel each). Carry on and exit the woods when my hips start to hurt (not long after the cheese break). Sometimes I manage to persuade Gautier to join us. He doesn’t really get the whole ‘seizing the moment’ thing; I have to beg him to come along and I still get a ‘no’ more than a ‘yes’. It makes me sad.

Plan B: If Gautier’s at work and Cookie’s not home, and if I can move my neck like a normal person, I drive to the seafront in Hove. I’ll park up about 10 minutes’ stroll from the Italian ice-cream place and say hello to every passing dog and every swooping seagull, then pick up a mint choc-chip or pistachio ice-cream and sit on a bench overlooking the sea.

It was a bit woolly

I can’t sit on the bench for very long, or the pain inevitably sets in, but I can manage about 10 minutes before I have to move, and what a glorious 10 minutes it is. I stroll back to the car covered in ice-cream and usually spoil the mood by stopping at Asda. Us ill people have to do stuff while we can, see, even if buying cleaning products and supermarket knickers kind of knocks the shine off things.

Plan C: I go into town and meet a friend for coffee. Not lunch (can’t afford it), but a coffee. And not in Starf*cks or Costa Fortune or any of those horrid, stinky chains. I like to keep local businesses going with my one cappuccino a month. I’m sure they’re grateful #lastofthebigspenders

Since my little outing to the Olympics – and bear in mind I was only observing, not taking part – I have had 12 consecutive days of straight up pain. New pains, at that. Long-lasting neck pain. Pain all the way down my arms and legs. The usual constricting pain around my ribcage, the shooting pain which radiates from the middle of my spine, and the dull, frustrating, ‘Hello, I’m still here! Yes, me! Ha!’ pain in my hips. The only parts of my body which didn’t hurt this morning were my face, my hair and my toes. I kid you not. I have cancelled everything I planned to do this week, from a birthday lunch with friends (no, I’m not still milking my birthday, I mean hers) to taking a load of really decent stuff to the children’s hospice charity shop in town. I made it to the post office on Monday, and that’s it. Whoopee!

Today I feel as though I’ve been kicked in the back by a donkey, then run over by a Renault Espace, then punched in the arms by a bare-knuckled gypsy and finally picked up by an eagle and dropped on to the pavement when he realised I was a bit heavy to carry back to the nest. Proper. Fed. Up.

Me, yesterday (note new outfit)

The most infuriating issue with ‘invisible’ illness is that it hurts. I mean, it really hurts. Walking with a stick or using crutches doesn’t help me. The pain is in my upper body as much as in my legs; it doesn’t work. I just do everything in slow motion – walking, reaching for something in the supermarket, putting things in my trolley (a basket is my enemy; any more than a couple of apples and a packet of Jaffa Cakes and I can’t carry it) and putting bags into the boot. I pack my shopping so slowly that people behind me start sighing; that’s when I say, ‘I have arthritis; I’m not doing this slowly because I’m trying to savour the moment.’ Of course, were I holding a walking stick, or in a wheelchair, I’d not have to say anything. Well, maybe I would. Some people are just nasty. I wish people would look at my face; that’s where you can see how much I’m hurting.

This is not my shopping

Here is a pile of stuff which is supposed to help with the pain. Shame you can’t read any of the labels. Sorry:

Yes, we do have a pink bathroom floor. Oof!

I’ve been on Etanercept (Enbrel) since 2004. That’s a long time. I lie awake at night worrying about what this treatment is doing to my body; I read of cancer scares and kidney failure and livers giving up. There is a warning which comes on the first page of the brochure for one of the anti-TNF therapies; in a nutshell it’s saying, ‘Yeah, chances are you might get cancer, but it might be worth the risk if it helps with your pain.’ The cover of the brochure shows a bunch of people – a good ethnic mix, naturally – all seemingly delirious with excitement at the idea of injecting themselves with this drug. I would like to design and write these things. We are sick, not stupid. Patients in need of biological therapy are at their wits’ end; we deserve honesty, we deserve answers to our questions and above all else, we deserve to know what risks we are taking. I have a friend who developed alopecia after starting a new anti-TNF treatment. When I mentioned this to my rheumatology nurse, her answer was this: ‘Well, it affects people in different ways; just because your friend’s hair fell out, doesn’t mean yours will,’ with the same tone Gok Wan uses to tell women that not everyone suits a wide trouser. So, I’m wondering how other people deal with their pain. What works for you?

I’m not talking about watching a DVD or eating a big slice of chocolate cake, I’m talking about conventional or alternative medicine. I kick off with an Epsom salts bath followed by 30 minutes of gentle yoga (when I can get in the bath or on the floor in the first place, that is).

Squeaky, our cat, likes a bit of Hatha Yoga, too

I take Paracetamol or Co-Codomol on a daily basis, and have just discovered Syndol. I like that. I can’t take Dihydrocodeine (even when accompanied by food and an anti-nausea tablet) because I always feel sick for 24 hours after taking it. I can’t go back to bed or lie on the sofa watching films, either, no matter how exhausted I am. I have to be doing something, because the less I do, the more I hurt. When I hurt, obviously the less I want to do. Talk about unfair.

I use heat patches on my shoulders and hips. Gautier rubs Deep Heat into my shoulder blades and up and down my spine. I’m going to try lavender oil when the pain is concentrated in small areas, like the side of my neck, to see if that works. I would rather smell like Provence than a men’s locker room.

Lavender, yesterday

I must admit that I also use alcohol to dull the pain. Not in the morning, and not all the time, I hasten to add, but I’m not going to lie – it’s more tempting to down a couple of home-brewed Turkish Delight vodkas with ice-cold tonic at six o’ clock than it is to clog my stomach up with codeine.

Husband, new monkey bag, new (old) dress, home-brewed Turkish Delight vodka (also matches my dress, see?)

There, I’ve said it. I don’t care. I don’t have children to pick up from school, I don’t have a job to hold down (unfortunately), so it’s only willpower, a lack of disposable income and the thought of looking like Ronnie Wood which keeps me from becoming an alcoholic. If I did end up like that, my role model would be Sue Ellen from Dallas; although her hands shook and she drank neat Scotch (ugh), she always looked well groomed. Silk blouses, heels and plenty of jewellery – I reckon I could rock that look now I’ve hit 40. I just need someone to help me get dressed and pour me a drink. And get me a gun, of course. Someone call Gok Wan, I’m sure there’s a Channel 4 series in this…

‘This is what I call a small drink, yes.’

Happy Birthday?

Click here to download my little book:
Mostly Cloudy, With Some Bright Spells

It was my birthday last Sunday. I am now a whopping 40 summers. How mad is that? I would say I don’t know where the time has gone, but I do. Most of it has gone on feeling useless, worthless, frustrated, angry, hopeless and sad for the past decade since not just one, but a handful of stupid, nasty, unforgiving chronic illnesses ripped my world to shreds.

It has been spent begging for help and screaming for understanding from the medical profession. It has gone on wondering how I lost everything, and how I’m meant to deal with never getting it back. I’m still working on that; it is not going brilliantly well. My days are spent doing housework very slowly, going to the supermarket when my pain permits, faffing about on the computer wishing I had the energy and the motivation to write a novel. I am determined not to spend another decade faffing, although my pain rarely allows me to achieve anything that I set out to do. I start the week with good intentions; invariably my ‘to do’ list gets longer, rather than shorter.

Back to my birthday. I got loads of brilliant presents, which I photographed because I wanted to, and my friend Amy made me a mental birthday cake. Amy is a mere 22-years-old. She is always smiling; I love having her around. I would sooner talk about stupid stuff than grown-up stuff; I misbehave more when we’re together but it’s such fun. It reminds me of how I used to be, and sometimes that’s just what I need. Anyway, stand back and behold such wonders as a vintage ’50s sea shell bag, a vintage ’50s flamingo vase, tiny venus fly traps, booze, lillies, a panda top and a monkey lunch bag, a hand-knitted ’50s-style jumper, orchids and all sorts. I’ve never known a day so full of presents since Christmas 1977 which kicked off with a doll’s house that made me shriek with excitement:

Nice, huh? Back in 2002, on my 30th birthday I had a barbecue at mum and dad’s house. I’d been out of hospital for two weeks following J-pouch surgery (reversal of my ileostomy after emergency surgery to remove my minging, diseased bowel). Friends and family turned up and sat in the blazing sunshine all afternoon. I wore a dress with stripes going in three different directions in an attempt to distract from my ileostomy bag which sat upon the right hand side of my tummy; I was so thin that because my insides itself protruded an inch or so from my side; you could actually see the shape of the blob through my dress. I did my best to ignore it all day, but it’s hard to ignore something so… well, wrong. I knew that people would sneak a look and almost said, ‘Just look now, then not again’ to get it out of the way. I didn’t blame them for being curious; I just didn’t know how to deal with it. Who would?

Whatever we were celebrating that day – I think it was more relief that I was alive and actually turning 30, rather than the event itself – I was two stone underweight, still crippled with pain from as yet undiagnosed spinal diseases and I had been cut open like a pig in a slaughterhouse during eight hours of traumatic, life-threatening surgery just weeks before. I felt like a circus freak. My stomach hurt like hell. I just adopted a fake smile. I had to. I lied when people asked me how I was, telling them what they wanted to hear – ‘I’m fine.’ I convinced everyone that just because I didn’t die, everything was OK. It wasn’t. I’ve been pretending ever since, but the cracks are starting to show. I simply don’t have the energy to keep it up. Here’s my fake smile:

So, to my 40th. Two weeks before my birthday I saw my new rheumatologist in Brighton. He had news. It’s news I don’t want to go into today; news that wasn’t good, news that changes everything, yet means everything will stay the same. It’s complicated, it’s messy, it’s too difficult to talk about just yet. Anyway, with this on my mind, I wasn’t really in the mood for celebrating. I couldn’t think of a single think to celebrate, other than having a ticket to the Olympics (more on that later). But I went ahead with it. I had bought a beautiful baby pink vintage ’50s dress from a friend of mine, and wanted to wear it. I don’t get out much; I needed the party to have an excuse to wear it.

My moods are so extreme these days that I scare myself. I will smile when I’m out, I make fun of myself, of everything. I’m not like it all the time; that would be madness, but outside of the four walls which I inhabit all day, every day, I like to step it up a bit. Nobody really sees the flip side. Well, Gautier does, but he doesn’t really know what to do or say any more. It’s simply always bad news. He doesn’t have the answers, so he doesn’t see how he can help. Sometimes I know he can hear me crying, but he puts on his headphones, he pretends it’s not happening. I just want a cuddle.He can’t say, ‘It’ll be OK,’ because it won’t, but a kiss on the head and a reassuring squeeze of the hand would go a long way. He’s my husband. He promised to care for me on the day we got married (I didn’t include ‘in sickness and in health’ in our vows; I knew there would be no ‘in health’, so it seemed pointless). I think he is afraid of what will become of me, of us. Of what has already become of me, maybe. Sometimes I just run out of tears after a while, take a deep breath, stand up and get on with whatever I was doing, be it cleaning the kitchen floor or brushing the cat.

If there was a button I could press to extinguish my life in an instant without destroying the lives of the people who love me, I would have pressed it 100 times last week alone.

With each year that passes, my health will deteriorate. This is not just about the disease which has made its home in my spine (scoliosis and axial spondyloarthritis), in my hips (sacro-iliitis) or the more recent pains I seem to be getting in my arms and legs (sciatica and I don’t know what, but really? New pains?) This is about the other disease which took hold of me, too. Ulcerative colitis has left with a makeshift digestive system and a small intestine (my large intestine went into an incinerator in 2001) which is riddled with scar tissue. I get blockages. They are not pleasant. It means I end up back in the same hospital, on the same ward, in the same room, even in the same bed as the one in which I was left dying in 2001. I have so far avoided surgical intervention; my surgeon tells me it is ‘only a matter of time.’ I cannot bear to think about it, but it’s there, in my mind ALL THE TIME. I am on biological therapy for my sacro-iliitis; therapy which is known to ‘increase the risk of cancer’ after a while. This stuff – anti-TNF treatment – weakens the immune system and has been coarsing through my blood stream for eight years. Too long, I fear. People who have never been sick yet say, ‘Ugh, I hate hospitals’, seriously, don’t speak to me. I may punch you, and then you will actually end up in one.

So, the party went well. I was determined to jive, even though I could barely put one foot in front of the other that morning due to having to clean the entire house from top to bottom over the previous two days (yes, it takes me two days, on and off). I wore heels. I danced. I grimaced whilst I danced, because the pain in my left hip was pretty bad. Gautier took me to one side to have a quiet word with me. Two words, actually – ‘be careful’. I yelled over the music that I was ‘dancing through the pain barrier because it was my birthday’. He reminded me that the pain barrier would be down the next day, and I would probably regret pushing myself. I kissed him, and stopped dancing. I love dancing. It makes me feel like I’m alive. Properly alive, not just technically alive. I knew I shouldn’t be doing it, but I had to. I used to dance all night before I got sick. I miss it more than anyone can imagine. Before my party I’d had four dances in the past year, and the pain was unbearable afterwards. Here’s Gautier telling me off a bit. Pantouf, our panda son who features heavily in my book, is in the background:

Gautier: ‘Take it easy, stop being an idiot’.
Me: ‘But I am an idiot.’

The next day was fine, weirdly. Some friends had stayed over and we went to Hove seafront for an egg and chips brunch and ending up sitting in the sunshine all day. It was so, so nice. I had no pain at all, which amazed me (and Gautier). I’m guessing endorphins play a bigger part than I thought possible when it comes to pain relief. When I woke up on Monday morning, however, and everyone had gone and the excitement was well and truly over, there it was. I could barely move. I hurt everywhere. My ribcage, my arms, my feet, my legs, my neck, my back and most of all, my left hip. I tried to stand up, and fell back on to the bed, gasping in pain. I spent the day trying to clear up after the weekend; I did four lots of washing (two beds’ worth of sheets and duvets, towels which friends had borrowed, the usual vintage bits which needed hand-washing), doing everything in what felt like slow motion until I gave in, and gave up (I still managed to get all the washing dry – go, me!)

I was hurting. A lot. I had to crawl up the stairs and come back down them sitting on my right hand side, holding the bannister, one by one. I gave up at around 3.00pm and lay on the sofa, dosed up on dihydrocodeine.

The party was great, but I like to spend my birthdays in the company of animals rather than humans, given the choice. Llamas and alpacas are my favourite furry creatures of all, so on my actual birthday Gautier and my friend Amy headed to Ashdown Forest Llama Park for the day. I’d wanted to go on a llama trek, but I knew my hips wouldn’t permit it. I wrote to the llama park and asked if there was anything I could do that was a bit special, as it was my birthday, I had crappy diseases and I loved llamas and alpacas so much. I was promised a cuddle with Llama Tom, their chief llama, so off we went.

It turns out that I got to cuddle Llama Tom for a whole 10 minutes! Nobody was allowed to bother me. Small children were shooed away. ‘This is my moment – shove off!’ I hissed as a child ran towards us. Gautier and Amy had a cuddle, too. I have never been so happy in my life (apart from when I got to ride a camel ON MY OWN at the age of four at London Zoo, something I’m sure due to health and safety panics wouldn’t happen these days). I had no pain all day, nor the next. I am sure that if I was given a llama on prescription, I wouldn’t need anti-TNF therapy. It’d be cheaper for the NHS in the long run, and way more exciting for me. Gautier agrees. We could keep him on the green opposite our house. It’s just a thought.

Llama Tom permits me a massive cuddle. I look demented with joy, mainly because I was.

Thanks to the staff for being so super; they may well have said, ‘Too bad, llama walk or nothing,’ but I always believe in the motto, ‘Don’t ask, don’t get’ and if you ask really nicely, and you’re funny, you probably will get. And I did! I don’t think they have any idea – the humans or the llamas – how happy that made me. I will remember that for the rest of my (mainly miserable) life because it was the best thing in the world, ever.

Until yesterday, that is. Now it’s on a par with going to the Olympics with my mum, my brother and his girlfriend. I am draped in my Jubilee flag (I like to get value for money). Here we are, minus my mum, as she was taking the photo:

We’re only at the bloomin’ Olympics! Mental!
I’m a bit obsessed with Jessica Ennis

It was nuts; surreal, exciting, mesmerising, brilliant. We are all sport mad, so it really was a dream come true. My friend, Alice, had been allocated about 448 tickets; my brother had applied for all the athletics and swimming and got nothing. I relieved Alice of four of her tickets. My brother and I were determined we’d get mum to the Olympics as soon as it was announced that London would host it, and there we were. Yeah! We marvelled at Jessica Ennis on the first day of the Heptathlon. We cheered, we clapped, we queued for hours for a horrible coffee and didn’t queue at all for an Olympic wee (hoorah!) and we came home again via Tower Bridge (by this point I was almost in tears with the pain in my hips, but I really, really wanted to see the Olympic rings on my favourite ever landmark).

I was in too much pain to walk any further, so this would have to do.

I grimaced my way through the crowded walk from Stratford station to the Olympic stadium, dosed up on painkillers yet still feeling the pain slice through both hips with every step. I’m paying for it now, but that’s part of the ‘invisible disability’ thing I bang on about. I don’t feel that I can ask for a lift on a mobility cart thing because I don’t look like I need one, and I don’t want to beg. I look fine. It would be embarrassing. So I walked, and it hurt really bad, and it hurts even more today, but pain in return for watching Jessica Ennis go nuts in the hurdles – a once in a lifetime opportunity which I wouldn’t have missed even if my head was hanging off – or pain through dancing, is different to pain for pain’s sake. I call it ‘payback pain’ – I’m paying the price for actually feeling alive rather than simply being alive. Living as opposed to existing. Fighting for those moments, however brief, where we can forget the crap we deal with on a daily basis and escape into another world, be it a world of athletics or llamas. Or llamas doing athletics. Anything to help us forget, albeit only temporarily, how crap things are.

Those of you battling chronic disease, crippling pain and perhaps a life sentence of doom – for that is what many of us face – will know exactly what I mean. I often wonder what keeps other very ill people going. Is it hope? Is it family and friends? Is it having something to look forward to, no matter how daft it might seem? A few years ago I said I couldn’t kill myself because I’d never find out what happened in ’24’. What stops others from pressing the self-destruct button? What gives you the strength to keep going? If it’s llamas for everyone, we need to start a campaign to make them available to people with long-term, incurable illnesses. A bit like assistance dogs, but bigger. I’m happy to trial it.

For those of you yet to download Mostly Cloudy, With Some Bright Spells, do get on with it. Those of you who’ve read it, please be sure to drop by Amazon and leave a glowing review/pass the link to friends and family or even complete strangers (I think that’s called ‘spamming’, but who cares?) to cheer me up. Thanks.