I am 22 years past being over this illness

I have had M.E./CFS for 22 years and yet I never stop being annoyed, upset, angry when it sideswipes me. Today I had to have a nap after my morning shower because that little bit of exertion, that normal everyday routine of getting dressed, made me dizzy, weak and punch-in-the-face tired. No matter how long I’ve been ill, or how often this happens, I will never get used to it.
I’m apparently still recovering from the gig I went to on Saturday night; even though it was a gentle sit down affair and I’d felt pretty good on the day and the days prior, my body obviously objected more than I thought it would. It was definitely worth it tho, something the pacing advocates never quite get: yes the physical payback is awful, but the lift my mood receives from these lovely social events is more than worth it. Today I may feel pretty frustrated, but I’m smiling at the memories of Saturday night…


Ruby Loves Crafting but what about Robert?

I spotted a poster for a new crafting magazine – Ruby Loves “craft magazine for girls”. Part of the blurb from their press release says “Our magazine is based on traditional family values like mums spending time with their daughters and making things together …” With issue 1 you can make rainbow cookies, a mouse pin cushion and a daisy wrist band.

In other news: http://ftmlondon.org/ftm-exhibitions/kaffe-fassett/

A exhibition of work from one of our greatest crafters. Beautiful, colourful work including knitting, patchwork and mosaics. Oh, but he’s a man. A dude. A bloke. Fantastically creative, and in possession of a penis. How does that work DC Thompson publishing? Surely he should be a “mum spending time with her daughter”?

Here are a few points I think you missed DC Thompson:

  1. Boys can craft too, though they will be put off if everywhere they look they are bombarded with images and information that tell them it is “just for girls” and that crafting means making daisy chain bracelets and hair clips.
  2. Dads can craft with their children too. I happen to know one who has a marvelous time with his daughter making stuff – beading necklaces, making matchstick structures, sewing, knitting, robots, you name it and they craft it.
  3. Not all mums are crafty, not all crafty kids have mums to be crafty with.
  4. Not all girls who are crafty want to make flowery cupcake stuff. Some like robots. Crafting is art and engineering – why not explore that and encourage that kind of thought? I use some quite complicated maths and geometry in my crafting; I find it a source of pleasure that the maths I learned at school can be applied to making a skirt as well as space rocket nose-cone!
  5. There is so much gender categorisation of virtually everything children come across these days it is ridiculous. Yes your research has shown that mums and daughters are keen on the idea, but does that mean you have to run with the whole “just for girls, flowers, pink” theme? Parents are as guilty as manufacturers for buying into the whole flowerydelicatepink girls/roughtumbleblue boys thing we are suffering but that doesn’t make you pandering to them right – change has to come from somewhere and you are not helping.

I realise I am shouting into the wind here but hey, enough voices join together and someone might just hear us…

Remember the day when my body just gave up on me?

The last few days have been, um, challenging. Returned from a family visit/holiday with friends on Wednesday (5.30am start, urrggh) without my boyfriend as he has to stay and help his Mum’s business while she’s getting treatment for a shoulder problem. They don’t get on well so I anticipate many “AaaarghIcan’ttakeitherewhydidyouleavemealonewithherI’mgoingcrazy” phone calls over the next few weeks. Plus I may miss him or something. On the plane my lower back began to hurt. This coupled with my M.E. meant I went to bed as soon as I arrived at home but lo, the next day the ache had turned into full on sciatica. According to the wiki page it’s normal for people in their 30s to start getting it, most likely from spinal disc herniation, while the “nucleus pulposus is still a gelatin-like substance”. Eeeeeeeewwwww. And no, c’mon. Only old people get sciatica right?

In pain, walking bent-double like I’m 63, all I need is for there to be a letter from the government telling me some bad news. Like they’ve recalculated my housing benefit after a new housemate moved in and they’re not paying me enough anymore. Yeah, that would really help. /sarcasm So I drag myself down to the council offices to sort it out (done, no hard feelings eh, easy mistake to think the total rent for a 2bed flat in a good street would be £70/week and therefore I only need £35 for my half of it….) and return home feeling muuuuch worse. Back to bed for the next two days with the sciatica so bad I can’t even sit.

Then today I wake up and my back is better. Still sore but definitely better. Awesome. Except, my arm. My arm hurts and I can’t lift it up straight in front of me. Weirdly I can bend it at the elbow and lift it over my head like that, but straight out? No. Seriously, as Liz Lemon would say “What the what?” I do battle with my body on a daily basis anyway, why hast thou extra-forsaken me now oh pile of M.E. riddled rubbish? *sigh*

So this afternoon consists of Star Wars and this:

Nutcity Hazelnut Spread

I can’t believe it’s not Nutella!

Yes that is a spoon sticking out of it. Don’t judge me.

Where did *that* come from?

Yesterday I went for a hike. With Simon Pegg and some random parkour guy. I was a bit put out because I didn’t realise he was a parkour guy but when the first near-vertical wall of mud challenged us it turned out that I could just about manage to keep up. Simon Pegg was awesome at parkour by the way. After a while we came across an outward bound centre with a shop in it. I lost the boys, spotted Simon Pegg going into a lift so I caught up with him by parkouring (is that right? can you conjugate parkour? I parkoured, he parkours, it’s a bit parkoury?) down some stair bannisters. He had bought some socks for me. Only the best socks in the world! They were thick, and warm, had a dragon on the ankle, and a pocket in the side. In the pocket was a miniature torch. “Press the button!” Simon Pegg said. I pressed it, the light came on, and also a recording of Simon Pegg’s voice saying “Come on then!” like he was telling me to catch up. Best. Present. Ever.
OK, it may have been a dream.

“I had a dream last night I wanted to sleep next to plastic” That’s Campervan Beethoven)’s deal. I like parkouring. With Simon Pegg.

Today (in the real world, not a dream one) I went to the car boot sale and bought antique poison/medicine bottles. Cue *rolleyes* and “what are you going to do with them for pete’s sake?” from the other half. But when I pointed out that the manufacturer of the 70 year old medicine bottle had the same (unusual) first name as him he shut up. Which makes that a WIN.

Apothecary bottles

Not purchased: a large, framed, print photo of Texas Home Stores, Birmingham.

Etiquette Lessons for Luke Skywalker

My other half is a light sleeper. Really light sleeper. And for the past couple of nights he has been kept awake by “a noise”, a low pitch hum that I can’t hear at all. Last night he poked me awake again to tell me it was still there.

Him: “That noise!”

Me: “I still can’t hear it. Is it really that bad?”

Him: “Arrgh, it’s like someone’s having a light sabre fight in the flat below!”

Me: “Light sabres huh? So you should go down there, be all like ‘Hey, you’re keeping me awake with your light sabre games!’ And they’d be all ‘Dude, we’re sorry. Why don’t you join in and play with us?’ And you’d be all ‘Awesome!’ and not at all pissed off at being kept awake by light sabres.”

Him: “Absolutely not – there is a proper time for light sabre fights and this isn’t the time.”

So apparently there is a proper time to have a light sabre fight.

And it’s not 11.45pm on a Friday night.

Now you know.