It’s Rheumatoid Arthritis awareness week, and in celebration my body is having a flare-up. Maybe it’s the weather, or something like that. Maybe it’s the love bird I’m up with all night, who now cheeps for food, simply because he wants to play, or maybe it’s just because life ain’t a box of chocolates.
When I tell people, I have to sleep in the day they say “Oooh, you are so lucky. I’d love to have time to sleep in the day.” Note the inference I’m lazy. Sleeping the day is rubbish. It’s dead time, that’s all it is. It’s two hours I have to filch back out the remaining 24-hours. It’s waking up hot, woozy and guilty. It’s time that could have been spent writing, or cleaning, seeing friends or prepping dinner.
I went to the RA nurse and asked for a steroid jab. She refused me because she says I’ll just overdo it while the drugs mask the inflammation. What a killjoy. Worse thing is she’s right. I’ve not accepted I have a chronic disease. You know when your mum tells you to take a coat with you because you’ll be cold, and you sort of know she's right, but it’s so annoying, you ignore her, go out, freeze and end up begging to put your hands in someone’s pockets to keep warm? That’s how I am with RA.
The children have been quite helpful. The eldest one can make tea now but doesn’t wait for the kettle to boil. I’m too grateful to tell her. The youngest one offers to carry me upstairs. She can’t, but she can tackle me to the floor which hurts. The middle one kicks me out the bed, so she can make it. Turns out overly-tidy people are annoying.
I was sobbing on the kitchen stool the other day. It was all very ‘poor me’. I hoped someone in the family would come and ask what was wrong. When the husband finally came in after a few minutes, he took one look at me, did the biggest sigh of his life, said ‘haven’t you bloody stopped yet’ then made himself a coffee.
I think he’s still cross about the bird thing, or maybe it was the cat boot sale we did for Father’s Day, or ‘Fart-hers Day’ as my kids spelled it in their cards. There was no breakfast in bed for him. I had us up and out the house by 7am to get the best spot. We could have chosen to do a car boot sale any day, but me, being me, decided Father’s Day, in the rain was the perfect time. “It’s going to be quiet.” Denny on the door told me. I ignored him. He was right.
My middle daughter is eight. She wanted a butterfly cake – it was a beautiful thing, all green and yellow and glittery. I didn’t bake it (more on that later).I got a professional to craft it and proudly presented it to the kids, candles glowing, tears of nostalgia in my eyes as we sang to our beautiful Daisy-girl.
The husband got out his camera to take a photo, at the exact moment our youngest daughter picked the pink wormy icing-caterpillar off the middle of it
and bit it in half.
“Mum!” Daisy shouted, outraged and horrified, “Bliss has bitten the willy off.”
There was no willy on the cake I made. I found a recipe on Twitter for an 'easy' chocolate-banana loaf. I followed the recipe to the letter and ended up with a heavy burnt brick, which I took along to lunch at a friend’s house.
After the delicious lunch she made, I gamely hacked into the ‘loaf’ and dropped a slab on her plate. I need to say at this point, I did only use a pinch of salt, but I only had pink Himalayan crystals to hand. Forget chocolate and banana. All you could taste was sodium and chloride.
My lovely friend Pam gamely tried to solider on through a second bite, but I stopped her. “Don’t do it” I gasped as the salt crystal soaked up the last of my mouth’s moisture. “It’s lovely” she croaked back “I just need……. water.” She went to the sink and downed two pints before girding her loins for another go.
Salty tears of shame filled my eyes as I watched my darling friend determined to be polite.
I grabbed the plate away at the last minute and marched it over to the bin. She flapped her hands in protest, still unable to do more then croak. I decided then and there I’m never baking a cake for anyone again, unless I don’t like them.
I’m still recovering from my book launch on Saturday night. How sad is that, when I don’t even drink. All I did was some barefoot dancing and I’m still hobbling five days later. The worst thing about having a party is the fear no-one will turn up. The best thing about having a party is you get to pick the music and dance like no-one’s watching, which they aren’t, because no one turned up.
Ok, that’s not entirely true, people did turn up but there was a moment when me and Billy Idol were both dancing with ourselves uh-uh-oh.
As the evening wore on and people oiled themselves with gin, the dance floor began to fill up. At one time, three people were on there with me, throwing shapes, wiping their feet on the rhythm rug – then my phone rang, which I was using to stream my music through and the whole party came crashing to a halt.
Why do these things happen to me? There’s no need to watch soaps on the TV, I’m living one daily.
The husband has got a Panini sticker book of the Word Cup. A friend bought it for him as joke and he’s taken it really seriously. Evenings are taken up with him perfectly aligning football players on their special pages.
No one is allowed to help. The children’s plump little star-shaped hands get battered away by his giant paws if they reach for one, ‘It’s so shiny Daddy, please can I help?’ ‘No, go away, you’re creasing the pages.’
The best bit? His ‘swopsie’ partner is a six-year-old called Lucas.
When I told him I was sick of the stickers and wanted us to spend more time together he bought us tickets to Circus Las Vegas and spent the whole time looking at the women dressed up in feathers.
Then ‘Strong Man Wayne’ came onstage looking for a volunteer and decided the husband was the perfect choice to upstage, being quite brawny himself. He was asked to bend a steel rod. He tried and failed, before handing it back to ‘Strong Wayne’ who moulded it over his thigh as if it were a pipe-cleaner while I screeched encouragement from the ringside.
It wasn't for the weedy husband. I supported Wayne, very vocally. No point flogging a dead horse after all.
The husband asked to keep the steel rod and keeps trying to bend it back after reading about ‘techniques’ online. When he fails he goes off to his sticker book, muttering ‘I could bend it, if I had the right shoes.’
Any other hay fever sufferers out there? I don’t mean the odd sneezer. I mean those of us who have tears permanently running down their cheeks, a sore throat, tickly cough and are only ever sneezing or preparing to sneeze again. When my brother, John reads this he will ring me up and play a sad violin song over the phone to let me know I’m pathetic.
When my mother reads this, she will call me and tell me I don’t have hay fever, only Michael, her favourite child gets hay fever, very badly. When the husband reads it, he will tell me to stop going on about it, but he doesn’t know what it’s like. I can’t see, I can’t sleep, I can’t breathe. I went to the doctor about it and he was like ‘What do you want to do about it?’ I said, ‘I don’t know, hence why I’ve come here, for help!’.
He fobbed me off with giant tablets which don’t work and a nasal spray that burns going up my nose and burns when it then trickles down my throat #cueviolinmusic.
People on the school run think I’m crying. I see their minds whirring gleefully as they try and work out why. Maybe me and the husband have split up again, maybe my book sales are going badly. Maybe I’ve finally realised no one likes me (no, yes, and I realised that ages ago. I’m obnoxious, not stupid.)
Some kind, simple folk told me to use local honey. One (crackpot hippie) said it had to be made within three miles of where I live. I told them I was off to Haywards Heath for my monthly Rheumatology infusion which was more than three miles away, so what good would Rottingdean honey smeared all over my nose like Winnie-the-bloody-pooh do me then?
He told me if I used Manuka honey, my Rheumatoid Arthritis would be cured, and I wouldn’t have to go to Haywards Heath again.
Don’t you just love people why have all the answers all the time? I wonder what it feels like to genuinely think you know what’s best for everyone. I’ll ask my mother, or my eldest daughter, who thinks she’s my mother.
Sentences I hate start with ‘If I were you’ (you’re not, so stop right there) ‘what you should do is’ (not spend time with people who tell me what to do) ‘Your problem is’ (people like you). I don’t tell other people what to do, apart from my husband, who doesn’t do it anyway, and the children who laugh and ignore me.
Plus, I enjoy moaning. It’s a hobby of mine. It’s lovely to tut and sign and much cheaper than collecting snazzy handbags.
So my husband went to New York on a ‘work trip’ to see the boxing. He left me with a fridge full of M&S pizzas and a jaunty high-five. I decided I’d have a better time than he did, just to spite him. It didn’t happen. He sent me a photo of him in a ‘titty-bar’ while I was doing a black and white jigsaw of a badger that my 80-year-friend betted I wouldn’t be able to finish. I told him ‘You are 80. You have trouble finishing a wee, I’ll get this done in a jiffer.’ It was harder than the nipples on the barista in the photo the husband sent me. Finding the nose was the highlight of my weekend, excluding the family sized trifle I ate at 2am after finally getting the children to sleep. Don’t you ever wonder what happened to yourself?
When, exactly, did my hobbies stop being going to gigs and wearing ‘lit’ designer trainers and turned into gardening, jigsaws and code-word puzzles in the paper? I’m only 36. What next, a weekly game of Bridge, bowling on the green? I still wear cool trainers, but I get them off eBay so someone else does the hard work of breaking them in. That’s how old I am.
The husband bought me back some Nike Jordans, which was very nice of him, but he didn’t read my book. It was the one thing I’d asked him to do. I said “All I want from you is for you to take the time to read my book. On the plane, or alone in the hotel room. It would mean so much to me, more than any gift could. Time is the most precious gift after-all.” I let him waffle on about Hooters and Boxing and the millions of commercials he watched on the TV, and the late-night walks he took through Times Sqaure, and then I asked him, oh so casually, what he thought of my book.
I already knew he hadn’t read it. I’m his wife, of course I knew. I know what he’s going to say before he does. When he opens the fridge, I pass him the cheese before he can ask me if we’ve run out.