Stuff That Makes Me Feel Better When I Feel Rubbish

There are few things in life which can drag me through the gloomy underworld of pain and exhaustion which I inhabit, and go some way to spreading a little happiness throughout my disease-ridden self. Years ago, when I was in such terrible pain I felt I had no option but to end it all, I was saved by the telly. It’s true. I couldn’t bear to not see the next series of 24, so I reasoned that I had to stay alive for that. Eight seasons in a row? Eight years where I thought, ‘I can’t disappear now, I’ll never find out if Jack Bauer saves the world, will I?’ And boy, was I OBSESSED with Jack Bauer. Still am, to be honest. I watched the fifth series almost in real time, pausing only to nip to the loo, have a quick shower, make a bacon sandwich and take a little nap. It was, and still is, the most immense series ever created. I would free up a kidney to have a button on my head which makes my memory of the entire series disappear, just so I can watch it again and again. Look at him! So maddeningly fit, and he’s even a grandad!

I also love HomelandTrue Blood, Man Men, Boardwalk Empire, The Big Bang Theory, 30 Rock and Desperate Housewives, too, but none of them would save me from the overdose of doom. So I basically owe my life to Kiefer Sutherland. I wish he knew; I’m sure that if I was eight years-old someone would arrange for me to be able to meet him. He’d bend down, hug me and let me kiss him on the cheek, before presenting me with the box set of 24 on BluRay. And maybe a gun and a four-wheel drive Lexus. But I’m not eight, I’m 39, so that’s never going to happen, which is a real shame. Not for Kiefer, particularly, but  for me. Although I bet he’d like me if he met me. I medically need this to happen. I’m sure the endorphins I’d produce would kill off the bad stuff which lives in my blood stream. It’s worth a shot, surely?

Before 24, I’d seen The Lord of the Rings at the cinema and Legolas’ magic getting-on-the-horse moment made me gasp so ferociously that I dropped all my Fruit Pastilles from the tube. I spent the next 10 minutes retreiving them, blowing on them and eating them (but not the green ones – I don’t eat green sweets) and came out of the cinema so elated that I knew I was in love. Again!

I hadn’t felt like that since I first saw Gary Lineker playing for England against Mexico in the 1986 World Cup, tanned and lithe, skillful and tricky, and all with his wrist in plaster. Oof!

Apart from great films and decent telly, biscuits and music play pretty big part in my life. Today Gautier and I went into town, aided by him running me a bath so hot I thought he was actually trying to kill me (he would not be good with a baby, seriously) and some codeine. Gautier was headed for the guitar shop. He picked up a baby pink, custom made Fender ’59 Esquire, no less, an absolute beauty of an instrument. It wasn’t even custom made for him – it was made for someone else in the shop, but when it turned up, the guy could no longer afford to buy it. He is more in love with her than with me, but I can’t say as I blame him. I’d sooner lose him to a guitar than another woman. Look at her!

Anyway, he was in such a state of shock at finding his dream guitar that his hands were shaking and he had a really funny look in his eyes. It was a mixture of sheer terror and total joy (I’ve seen that look before, on the morning after the night that he proposed to me). We went for a coffee so he could calm down a bit, but I think his double espresso and Marlboro just made the palpitations worse. I ordered a cappuccino – ‘hold the Marlboro!’ – and was delighted to see that it came with one of these on the side:

I love these biscuits as much as Gautier loves his new guitar. It’s true!

So we came home, and he’s now rehearsing for his next show with the delectable Ruby Ann. Again, if you’ve read Mostly Cloudy, With Some Bright Spells you’ll remember that it was she who introduced me to Gautier. She is brilliant, and so is he. I can prove it, with this:

As if he married me! I still think it’s funny, and when I’m in the audience watching Gautier play I get SO excited it’s untrue. Once, he winked at me from the stage and I WENT RED. Seriously! I thought I was going to faint, I’m that much of a crush-befuddled div.

So. Ruby Ann has a new album out. I have been listening to it a lot lately, not just because it’s ace but because it’s handy for me to learn the words in case she drinks a little too much whisky before she goes on stage and forgets a few. She can just look down at me and I’ll be able to help (this actually happened a long time ago, but I was more drunk than her, so I’m not sure what she took from it, to be honest). If your ears deserve a treat, you could do worse than buy her new album. Your ears will thank you, I’m sure:

So, that’s our Sunday, to be topped off with a MASSIVE treat: a Thai take away. Squeaky the cat is curled up on her chair and we’ve got an episode of Homeland to look forward to a bit later. I’m in pain, I’m utterly exhausted because I can’t get a decent night’s sleep and I know the rain is going to make my symptoms even worse tomorrow, but right now I’m so happy about the good stuff in my life that I don’t want this bloomin’ day to end.


BBC Radio Sussex Interview

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

BBC Radio Sussex host Danny Pike kindly invited me on his show. We talked about what it’s like to live with a chronic, ‘invisible’ illness/disability as well as more cheery stuff to do with my mad career as a journalist before I was struck down with AS. He even let me nip to the loo half way through the interview – what a nice bloke! You can listen to that here – it’s in three parts:

BBC Radio Sussex interview: part one

BBC Radio Sussex interview: part two

BBC Radio Sussex interview: part three

Good Stuff vs Bad Stuff

I wish this was my actual Easter bunny. It's not.

First off, if you haven’t read my book yet, more fool you. It’s called ‘Mostly Cloudy, With Some Bright Spells’ and along with being awarded ‘Book of the Week’ in a national newspaper, it’s also getting super reviews on Amazon. Take a look, download it, gasp, laugh and cry:

Mostly Cloudy, With Some Bright Spells

It’s rubbish, being ill. I mean properly ill. We’ve all had flu, we’ve all had toothache and we’ve all had a stomach bug or virus, and every one of them is painful, uncomfortable, frustrating, exhausting and debilitating. But they’re usually gone within a couple of days, and your life goes back to normal, doesn’t it?

This is how I try to explain what having a long-term, extremely painful and uncomfortable illness is like to people who are well. Imagine the last time you were sick, and then imagine feeling like that every day – bar the occasional let off – for the rest of your life. Imagine never being able to plan a holiday, a weekend away, or even a crappy trip to the supermarket because you don’t know how bad you’re going to feel from one day to the next. Top it off with the sheer exhaustion which comes  from a general lack of sleep, as well as being in pain 24/7, and you’ll have some idea of what someone with severe Ankylosing Spondylitis goes through.

My one saving grace is sunshine. When the weather warms up, I generally have a better time of it. I seem to get a little less pain when it’s warm (and most definitely get a lot more when it’s cold and/or damp), although it might be psychosomatic in part. There’s no better feeling than having the sun on your back. It doesn’t just warm my spine, it warms my heart.

When the sun comes out I do actually get this excited

Living in Brighton means that I take every opportunity I can to drive to the beach, even if I just manage to walk from my car to a bench to look out at the sea for a few minutes, and then go home again (I find sitting more painful than walking, except when I walk too much and my hip pain starts up. D’oh!) Yesterday I woke up at 5.00am with a pain score of around 8/10. This, for me, means I can lean over to get my painkillers and my glass of water, and whilst doing so makes me gasp with pain, I can manage it. I lay back down for three hours, sleeping intermittently, but as always when I’m in pain and dozy, I had a horrible nightmare. It went like this:

Gautier (that’s my husband) had decided he’d had enough of me ‘trying to make him do things at weekends’ and left me. He went to live in my old flat (as you do). Except as with all weird dreams/nightmares, it wasn’t my actual flat, but some weird kind of massive imposing council block like something out of a Channel 4 documentary on sink estates.

Anyway, off he went, with about 10 suitcases full of very expensive vintage clothes, declaring me ‘quite annoying and boring’ on his way out. I stayed at home, unable to pay the mortgage, sobbing and eating cold porridge (I think I have a Goldilocks fixation) until one day he called and said, ‘I’m coming home, it’s rubbish, there’s no dinner ready when I get home from work and all my clothes stay dirty. Plus I have nobody to watch Homeland or 30 Rock with.’ So, he came home.

Me, yesterday

Remember, this isn’t real – it’s my nightmare. At 7.55am the alarm went off. Now it was real. I prodded him in the ribs, extra hard (for leaving me), and said, ‘Get up, get up, but don’t leave me, because you’ll regret it, big time!’ to which he merely looked perplexed, and said, ‘Do you want a tea?’ I said I did want a tea, and that I’d been having a nightmare. He looked at me as if to say: ‘Really? You think you’re the one having a nightmare? Gadzooks, woman, I have to live with you!’ He did not say this out loud (he didn’t need to).

I felt a bit better after a breakfast of codeine and corn flakes, then took a big hot Radox-filled bath (I want a super nice, luxurious bath oil, though; I keep forgetting to buy some) and managed to drive my lovely friend Amy, my furry kid Warm Bear (he’s a bear) and next door’s lovely little Terrier, Cookie, to the beach.

All four of us shared bacon, egg and chips (Amy had a sausage and shared that with Cookie), a cappuccino and a slow walk along the seafront. My hips hurt, but the sun was shining and I had my favourite things with me, so I ignored it, and Amy bought us ice-creams. Warm Bear took Cookie’s lead and even rode him… ha ha.

Honest to goodness, it was the best afternoon I’ve had in ages. Apart from last weekend’s llama fest, of course. All I did was sit down and eat, and walk a bit. Naturally, today, I’m paying for going so nuts and thinking I can actually sit or walk like other people can. I hurt like HELL this morning, feel OK-ish enough to sit and write this for 20 minutes and am starting to hurt again now. Time for some stretches and more painkillers. And perhaps a bit of my Easter egg, even if it’s not Easter yet. I have AS. I think that entitles me to bring Easter forward if I want to.

Me: 'Jesus, would it be alright if I had a bit of Easter egg even though it's not Easter yet?'
Jesus: 'I don't see why not!'