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Mostly Cloudy With Some Bright Spells

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Juliette Wills first experienced the crippling pain of ankylosing spondylitis at the age of 27 when she was at the peak of her career as a sports journalist and broadcaster.

It took four years for Juliette to be diagnosed, during which time she took every painkiller known to man: none of them helped. She lost her job, her relationship and almost lost her home. During this time she was also battling severe ulcerative colitis, a disease that would almost claim her life at the age of 29.

Juliette was finally prescribed anti-TNF therapy in 2004 and published her memoir – ‘Mostly Cloudy With Some Bright Spells’ – in 2012.

Last year Juliette moved to France with her French husband and their mental cat. Her AS pain is managed well with biologics, but she has recently been diagnosed with Crohn’s disease on top of all that. She is not lucky.

Read her blog here: www.juliettewills.wordpress.com

Order Mostly Cloudy With Some Bright Spells here (Amazon).

Here Juliette shares an extract from her book:

Spring 2001

The pain stayed with me, though now it came in the early hours of the morning as opposed to the night. At around 5am I’d wake up on my side, unable to breathe properly. I couldn’t turn over. Any slight movement sent white hot pain through my right side, from below my shoulder to my hip; a shark bite-shaped area of pain. Whenever I tried to move anything other than my head, it felt as though somebody was tightening barbed wire around my ribs. After a donkey had kicked me in the back. Sometimes, it was a different pain – deeper, more central, in my spine. That I described to my mum as ‘like someone has whacked each vertebra with a toffee hammer, all the way down my back.’

For two or three hours I’d lie there, unable to move, scared out of my wits. Sometimes, through sheer exhaustion I’d go back to sleep for a while. I’d wake up at 9am or 10am, and the pain would still be there, but fading. It would take 15 or 20 minutes for me to get out of bed by slowly sitting up on my side, and gradually pulling my body to the edge of the bed with my hands whilst gasping in agony. I didn’t have the energy for a scream. I would then tentatively stand up, and more often than not be on the receiving end of a horrendous stabbing pain throughout my left side as I put my foot to the floor. I would hobble to the bathroom in tears, leaning against the walls as I went, then go to the kitchen, swallow some pills – by now my doctor had prescribed me Tramadol, a powerful painkiller – and wait for it to work.

An hour or so later I could walk around my flat, still in pain, but not in agony. By then I could have a hot bath, which seemed to help, get myself dressed – slowly – and two hours after that I would be able to leave the house and walk into town or drive to the supermarket without having trouble breathing or standing straight, clutching my side as though I’d been stabbed. I felt spaced out, not right, unable to focus on anything. My days just disappeared in a muddle of trying to feel well enough to do normal things. Sometimes, though, it didn’t get better and I’d be unable to get dressed because I couldn’t bend down to pull my jeans up or put my socks on. I gave up on those mornings, and stayed in my pyjamas for hours, having a bath to try and ease the pain (not with my pyjamas on, obviously) then finally managing to get dressed as it was time to go to bed.

Clothes lay scattered on the floor, and if I dropped something, that also stayed there. It got so bad that I bought a ‘grabber’ from the Sealife Centre; one with a shark’s head for the grabbing bit. It was meant to be for kids, obviously, but I used it to pick up things I couldn’t reach. Well, I say I used it, but it was rubbish. I attempted to use it, refusing to let Mum buy me a proper one, because ‘old people use them, and I don’t want to’. How daft is that? But then when I think about it, it’s not that daft. Not being able to bend down and pick things up off the floor was the reality. I just didn’t want to admit it. I was 27-years-old, I wasn’t ready to say I was disabled.

I went back to the doctor, a different one this time. He was more sympathetic than my usual doctor, wanting to work out why I was getting this pain rather than just handing out tablets to dull it. He examined my back. I told him I was also getting joint pain, which had started up as I got out of bed, in my lower spine and hips, and that sometimes I couldn’t walk. He thought it might be rheumatoid arthritis, and prescribed some different tablets, though not painkillers.

‘These are fairly mild anti-inflammatories,’ he said, scribbling something down on his prescription pad, ‘and so should attack the inflammation directly and reduce it, so that you don’t need painkillers. Try them for a week or so and let me know how you get on.’

I really needed these to work. I’d planned a trip to Memphis in April for Dad’s 60th birthday present. We are all Elvis fans and I knew Dad would love to go to Graceland, he’s just too tight to spend the money himself. I talked it over with Mum back in February and decided that it was a great idea. At the time, my pain was manageable. As the trip grew closer, it was not.

I decided to go through with it as I’d lose a lot of money if I cancelled, plus I thought, ‘I can’t not see Elvis’s house.’

I was all packed and drove back to their house the day before we were due to fly. I still had some pain but it was easing off and I some mornings I almost felt OK.

I’d booked us a weird kind of room where my parents would have the bedroom with en-suite and I’d sleep on the pull-out bed in the lounge as if I was five. That way we were only paying for one room and Mum wouldn’t worry so much about me being ill if I was only in the next room. Well, it wasn’t even a room, it was more like a half-baked slatted door through which I could hear Dad watching Elvis movies on the 24-hour Elvis movie channel. I was doing the same.

‘It’s non-stop Elvis,’ said Dad through the slats, ‘how cool is that?’ ‘Very,’ I replied, ‘although unless it’s just my TV, we’ve seen Clambake four times already tonight.’ I turned out the light and went to sleep.

On day one I felt OK. By day two I could feel the pain coming back. By day three, I couldn’t get out of bed again. I didn’t want to worry Mum and Dad so I just pretended I wanted a lie-in. A couple of years later Mum told me that she knew I was in pain, but understood why I wanted to keep it to myself. It just upset her that I felt I had to.

We visited Graceland* and popped to Sun Studios, where Elvis cut his first record. I sat on the spot marked with tape where he stood and sang. It made me cry with joy, so Dad took a photo. He cried with joy when he stood on it so I took a photo of him. It went on like this for some time. We then had a root beer, which we drank even though it was disgusting, in the cafe next door where Elvis and Sam Phillips, his producer, would drink root beer.

‘Well, root beer is horrible,’ announced Mum. We all agreed on that.

I was meant to be driving us to Mississippi the next day. I had driven in America before – back when I was 21 I’d gone on holiday to LA, Vegas and San Francisco with my friend Rachel and if you can drive there, you can drive anywhere. Actually, I couldn’t drive there very well at all, now I think about it. I mounted a pavement in Beverley Hills and busted a wheel in San Francisco. Plus we screamed a lot on the highway because it was so scary. And we got lost, like, all the time. Plus we thought Vegas to San Francisco was a three-hour journey. It wasn’t. Oh, and when we did drive through Death Valley, we had no water except for two small bottles of Evian, hadn’t checked the radiator to make sure there was plenty of water in it, and only had some chewing gum, Guns ‘n’ Roses CDs and cigarettes. Also, I drove with one foot on the dashboard, reading a book because the roads were so straight and there was no on-coming traffic.

Still, I seemed to have forgotten all that, at least until careered through red lights on a railroad crossing with a police car right behind me. I whizzed through as the barriers came down, the police car trapped behind it. I hadn’t seen either – the crossing or the police. Dad looked like he was about to have a coronary.

‘Um,’ he said, tapping me on the shoulder from his seat in the back, ‘You do know that was a railroad crossing and that there was a police car right behind you, don’t you?’ to which I said, ‘Really! That’s mad, I didn’t see anything!’ and zipped through another red light. I soon remembered that traffic lights in America are above, rather than in front of you. I made a mental note to keep one eye in the sky, and one on the road. God, I hated driving in America!

In the morning we headed out of Tupelo for Shiloh. Dad is obsessed with history, particularly American history and the Civil War, and it has been his dream for as long as he can remember (probably as long as he wouldn’t think of going) to visit the Shiloh Battleground, home of the famous uh, battle. At Shiloh. Shows what I know. I can’t say as Mum and I were that thrilled at the prospect (me: ‘It’s just going to be a field, isn’t it?’ Mum: ‘Yes’), but the weather was glorious and as it turned out, Shiloh was, indeed, incredible. A nine kilometre drive around the park where the battle took place was interspersed with signs every few yards. I was driving at around six miles an hour, rather like those old men who end up on the news after finding themselves driving the wrong way down the M1 in their motorised wheelchairs having just popped out for some milk.

Each time we approached a sign, I stopped the car, and Dad got out and stood, hands on hips in front of the sign, and read what had happened upon that spot however many years ago it had happened. He’d get to the end, pull a face which said ‘Yeah, I knew that,’ which he always did, look up into the sky and all around, and get back in the car. It went on like this for about four of the nine kilometres, until I screamed, ‘Dad, will you just read it out of the window, this is driving me bloody mad!’

After three days (well, it felt like it) we left Shiloh. Dad was over the moon. I’d taken photos of him in front of statues, of him lying in the grass pretending to be wounded, pictures of a lake called ‘Bloody Lake’ where hundreds of men met their deaths, and which, on this hot day, reflected the crimson leaves of the trees surrounding it as though their blood still ran through the water. It was eerie, yet somehow beautiful. As we’d got the park fairly late in the day, nobody else was around. Dad, he would later recount to friends and family, and on some occasions complete strangers at the till in the supermarket, had had the place to himself.

‘I’ve seen Elvis’s house and I’ve lay on the ground at Shiloh. That’s all I need. I’m the happiest man and the luckiest dad in the world. I’ve got the best daughter anyone could have.’

He had a point. I am pretty great.

*you can read all about Juliette’s visit to Graceland in the book

Taken from ‘Mostly Cloudy With Some Bright Spells’ (Amazon)

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Juliette Wills
Author, Journalist, Broadcaster & Public Speaker at Juliette Wills
Former sports journalist, Guardian columnist, celebrity interviewer, football fanatic. Now cursed with chronic, debilitating illness - ankylosing spondylitis, scoliosis, fibromyalgia, ulcerative colitis AND Crohn's Disease. Really! Author of 'The Spotter's Guide To The Male Species' (2004) and 'Mostly Cloudy, With Some Bright Spells' (2012 Kindle Edition) and the updated paperback version (December 2013). Lives in France, with a very fluffy cat and a less fluffy French musician husband. Wheat and dairy free, frustratingly.

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