Books are for People, Not for Genders.

Winter Boy is just learning to read. He loves Thomas the Tank Engine. I thought he would have grown out of this almost 4 year long phase by now, but he loves is as much now as he did when he got his first Take and Play train. When it comes to books, he’s pretty clear about his interests. If it’s about Thomas the Tank Engine he will try to read it, stick it, colour it, press buttons on it. Although, i will give him his due, he is just starting to read actual words in books, and he eagerly reads whatever books he has from school, and he will attempt to read the words on anything that happens to be lying around.

Even bedtime is Thomas related if he has his own way. We try to break it up, for our sake as much as anything, as reading about a Really Useful Smug Engine can get quite annoying. Outside of the Land of Sodor, Winter Boy has no preference for ‘boy’ stories or ‘girl’ stories, whatever is easily reachable tends to suffice.

Summer Girl has gone through a (big) phase of insisting on ‘girl’ books. Glittery, princesses, fairies in tutus and pink sparkle everywhere; it has adorned her bookshelves since she has been able to read herself and be in charge of the book choosing. She has insisted on having the Rainbow Magic books, which are, in my opinion, dull, badly written and without imagination. However, in the spirit of wanting to encourage her to read, read, read, and not restrict or discourage her, I bought her a box set of 15 from the Book People, to place along with the classics on her bookshelf – Enid Blyton’s through to the complete Roald Dahl collection, and my absolute Favourite Book ever as a child – The Secret Garden by Frances Hodgson Burnett.

I am unashamedly delighted that she has tried and failed to get to the end of a single one of the Rainbow Magic books, which are deliberately targeted at ‘girls'; the covers are marketed for girls – pink and sparkle and fairies, the fairies in all books are girls, the main characters are girls and beyond the lure of maybe finding your own name it has very little substance. Not surprisingly, she has quickly become bored and has even forgotten which ones she’s started reading.

Summer Girl has on occasions been drawn into the ‘boy/girl’ advertising, struggling to have the courage and strength to choose what she would like. She is only 8 so I wouldn’t expect her to have those skills yet. Instead she has been guided by the glittery lights and pinkness of the bookshops, posters and book covers around her, and by what her friends are reading. She once stopped in her tracks when I suggested she bought a dinosaur sicker book, (having watched her delightfully help her brother do his) and hesitate, before reaching for the Fashion Dressing Up sticker book, again.

I have tried to not dictate to her what she can and can’t read, stick, colour, draw. But R and I have encouraged her to think about what she likes, have the confidence to look beyond the dazzle of pink and flowery, and to read all the things around her that might interest her. Conversations about it being ok to enjoy science, have ribbons in her hair, play with her dolls and playing football have included book reading and it’s starting to sink in.

Last month we all went to London. She dragged me, literally, into an antique bookshop and browsed the dusty old books, and marvelled at them with wonder, while Winter Boy sat himself on the floor, flicking through the solitary small ‘new book’ box tucked in a corner, reading (you guessed it) Thomas. Bella picked a book; 105 years and one day old, from the day it had been inscribed with a message to its first owner. The cover is dark green, with no pictures, with real typed pages. No sparkle, no pink. ‘please? can I have it?’ So i bought her Tom Brown’s School Days. It’s her prized possession, although she is waiting for the Secret Garden to be finished so we can read it together.

If she didn’t have the courage to ignore the mass advertising and inevitable impact on her peers, she would have been denied this experience of choosing a book that has inspired people for years. She wouldn’t be able to enjoy all books to escape on the many journeys they can take us; she would miss out on so much.

Luckily, she is learning that its ok to read what she wants. which, at the moment is everything she can get hold of. But this hasn’t happened with the help of bookshops and publishers, who continually thrust in her face that she, as a girl, shouldn’t be reading Star Wars magazines, but should be reading magazines about make-up and jewellery; she can do those things, but as well as, not instead of. Although if you asked her directly she would probably still chose the make-up magazines if I didn’t heavily encourage her to get something (anything) else.

I will continue to encourage her to push through the constant barriers set around her to define her femininity as one-dimensional. I will continue to encourage her to be anything, and everything she wants to be; to read anything and everything she wants to read.

I shall also encourage Winter Boy to do the same, But, I won’t be encouraging him to read the Rainbow Magic books; not because i don’t want him to read ‘girl’ books, but because they are shit.

Degenerative Disc Disease, Do you have it? (and Other Ramblings)

As a consequence of sitting for too long at my work writing an urgent report before 1pm, then driving like the wind across town to sit for too long on small school chairs for Winter Boy’s First Ever Harvest Festival Play and Summer Girl’s First Ever Speaking Part in her Harvest Festival Play (they were both amazing and brought tears to my eyes, so proud), then driving like the wind across town again to swimming lessons, then again across town via collecting R at work, and finally back home, I am Really Fucking Sore.

My back is in spasm and my entire spine is locked from lumbar to cervical. I can’t bend well, can’t sit well, can’t stand well. So, I am writing this while waiting for the trusted muscle relaxing ‘Friend‘ to do its magic. I may do the written equivalent of slurring towards the end of my post.

I had some not so great news this week at the pain clinic. The pain that I have been experiencing in my back and sciatica down my legs, and which is getting worse, is, partly the re-prolapsed L5/S1 disc, which I already knew, but mostly coming from Vertebral End Plate oedema at the same level, where there is inflammation and damage, which I believe is Degenerative Disc Disease. And thus we have come around full circle since the beginning of my blog, where I had initially had explained that my condition was DDD, then ruled out.

I have read a bit about Degenerative Disc Disease, and end plate damage, and it’s not the most mood lifting read in the world. The pain clinic answered my questions about what the future will mean due to this end plate inflammation,  with as much of a positive spin as he could, smiley faced while telling me that “yes it will get worse”, “no there is nothing that will fix it, fusion won’t help” and “you may experience increase in pain” “but we can manage this can’t we Wine?!” “stay optimist Wine!” “you are a determined woman Wine, a fighter, keep that going and you’ll be fine!” “don’t feed the pain, don’t fuel it with too much thought” etc, etc.

If anyone has experiences of end-plate oedema and degenerative disc disease, do get in touch with your advice, and links to information, and how you cope with it.

I’ve also had a blood test to rule out a spine infection due to localised large swelling in my spine at L5/S1 level (right between my Venus Dimples), painful blood/flu feeling (which I have blogged a little about before a year or two ago now), increased feeling of unwellness during a flare-up. Don’t think much will come of it, as he took the bloods after the main flare up. Also I read on Dr Google that low-grade infections don’t show in normal blood tests. But we’ll see what happens.

I have been reading some interesting articles on the Spine Health website, get sent links via Twitter and Facebook, and so I thought I you might want to read the most recent one I have been reading called Chronic Pain on the Brain – as the title suggest, it looks at the potential impact of chronic pain on the physical structures of our brains.

Camping is Good for The Soul.

IMG_6563I’m not always moaning and complaining about back pain. Sometimes. I have fun. This summer I had fun camping. Lots actually. CAMPING?! yep, that’s right. It’s potentially the worst thing to do if you have a bad back. But, it’s absolutely the best thing to do if you live in the South West, if you have children, and if you have friends with children.

I love camping and I will never give it up. I have lost so much of the fun in my life over the last few years; can’t bodyboard, kayak (well I can, but it means so much more hassle than I can bear), run, dance (ok, I never could do that), just living and being the person I used to be, but I won’t stop doing this.

I don’t feel so disabled when I am camping, and this is why: Friends. And R. And the children. But mostly R and friends. When we go camping, we all muck in, everyone helps each other. Someone has normally forgotten something, another normally has a spare. We work things out, we lend a hand without being asked. We share beer, burgers, music and laughter.

R and I have a Golden Rule. We must, absolutely always have a bottle or two of Good Beer while we pitch our SoulPad Bell tent. My job nowadays is a supervisory role, directing where the doorway needs to go, barking orders about the distance of the pegs from the groundsheet, reminding R for the umpteenth time that the front guy ropes need to be placed first to get it hanging right, getting more beer.

We often get to our pitch first, closely followed by another of our party, one of whom grabs a beer, the other grabs a mallet, job done and we move on to the next tent.IMG_1804

This leaves me to do what I do best. I pretty it up. I have swathes, bunting, fairy lights, hippy throws, lanterns, tea lights, hanging hearts. At the last camp we had chinese style lanterns, a coffee table and rug, and a large plant at the entrance to our ‘front room’. Ok, so that was not a planned piece of decor, a friend, M, got it from the plant sale at the site we stayed in, but what a magnificent touch! That’s going to be a new feature for camping. Plants. It hurts to do the prettifying you know, bending, kneeling, twisting, but so worth it, to look at the finished effects with a beer in hand, then tweaking, and moving. There are no shoes in the tent. There is no bouncing, no swinging on the middle pole like pole dancers; not R, he’s never been good at pole dancing. There is also no food, no fizzy drinks, no pens. And, as you can probably guess when there are 8 children ranging from 3 to 11, that these rules absolutely get obeyed. Never. We used the puncture repair kit on our last trip, when typically, my side deflated.

IMG_7027While the tent is going up, the children are gone. To the nearest park, tree, flat ground for scooting/bike riding, popping back for snacks and drinks; And once the tents are in situ, the adults drink tea, or beer, cook food, play guitar, sing songs. We see the children occasionally for snacks, drinks, the odd minor scrape, but rarely until it’s time to eat.

I take lots of painkillers when I camp, I ramp them up. Because, while its fabulous, it does still hurt, but it’s manageable with opiates, naproxen and diazepam. And lots of preparation. and a good mattress.

I help however I am able, which tends to involve removing rubbish from around the place, sorting out recycling and keeping the place looking tidy. But, there is no pressure to be or do anything particular, I am not messing anyone’s fun if I sit down or go and lay down in the tent. I am not getting in the way, and I am not being ‘looked after’ if I need some help doing something. Except I am, I just appreciate the subtlety.

Trewan Hall Campsite in Cornwall is beautiful, and is disabled friendly. They kept a pitch free for me when we visited, near facilities, shops, on flat ground, and their site is largely wheelchair accessible for those who need this. I celebrated my birthday there this year and we returned for our last camp of the summer. It’s peaceful, with magnificent grounds, walks if you can manage them, a fabulous pool with a diving board, much to Summer Girl’s delight (a Lido with a removable dome for bad weather).  It’s close to Padstow for spectacular fish and chips, and some of the best beaches in Cornwall.

So, as you see. People with back pain can have fun camping, as long as you have the essential ingredients of friends, beer, music and good food. And did I mention a good mattress?

Sleeping with Darth Vader and Emmet. It’s Wrong.

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I am writing while sandwiched between two sleeping children, two Lego alarm clocks and a glass of Weak Lemon Squash that I can’t reach. On a Saturday night. The rock and roll lifestyle is to be envied across the world. I am hoping that I don’t need to take a pee anytime soon as the process of clambering over them fills me with dread as my back is not in a great shape today.

We have been watching the Lego Movie in bed. To celebrate their new Lego Alarm Clocks – Winter Boy has Emmet and Summer Girl has Darth Vader. The purchase of said alarm clocks was to install a sense of time in them and not wake me by pretending to be invisible, crawling through the slightly open door and along the bedroom floor, while almost silently giggling. At 6am. On a Saturday.  The message was clear. The alarm clocks will go off at 7:30am tomorrow. They are not to leave their room apart from to use the loo, if they really absolutely have to. They are not to play music, musical instruments, whistles, sing, laugh loudly, go into the kitchen and try to make me breakfast, put the tv on. They can play with their Lego, tidy their bedroom up (they actually laughed at that one), read to themselves, read to each other. And most importantly, in the ‘not to leave the room’ bit they absolutely must not Wake Me Up.

The irony is not lost on me. They have carried these alarm clocks everywhere today. Winter Boy in particular has not let his out of his mitts. Except now, as they snore (not so) gently next to me, their alarms are still set for 7:30am but by my head, one on each side. And I can’t move the sleeping babes as I can barely stand straight. I forgot R was away tonight, so his usual putting of them to bed when he comes home is not happening. They are staying put until 6am. Instead of in their own beds, until 7:30am with me in my kingsized bed All On My Own.

Bollocks.

I might sleep on the sofa.

I Want To Dance.

I’ve recently been to the On Blackheath festival. The line-up for OnBlackheath looked good; Frank Turner and The Sleeping Souls, Imelda May, Athlete, The Levellers and more.  I grew up in SE London and have fond memories of Blackheath so it was exciting to ‘come home’.

This festival is not like other music events I have been to. A Middle Class festival with no camping,  food demonstrations galore and sponsored by Johnnie Lou. Full of middle class, middle aged people, but no-one wearing flowers in their hair or peacock feathers. Except us. R with his festival hat (and those peacock feathers); Summer Girl with that flower garland on her hair; winter boy with a black ribbon-adorned hat. We did see Champagne bars and exclusive areas with fabulous seating and palm trees and no queues for drinks; but only if you were a Johnny Lou member.

For those ticket holders who were not privileged enough to quaff cocktails while laying back on recliners, the floor with a picnic blanket had to suffice. Or standing. Or fighting with other peasants for space on the Rare as Rocking Horse Shit picnic benches, sandwiched between 3 distinctly different, yet equal in noise level, music stages.

I’ll repeat that, in case it passed you by.

Sitting on the floor. No camping chairs allowed. Did they think more damage could be done by drunk Londoners with Go Camping chairs than by a crutch belonging to a pissed off disabled woman? ‘Where did they think people with mobility issues are going sit?

Or standing. Which is mostly what I actually did. I lent on my crutch, walked a bit, sat on a child’s bench watching entertainers do street theatre, but mostly, I stood. Until, during Massive Attack, a large, heavy, drunk man crashed full speed into me. Pain seared down my legs, fear rose, and anger and upset that had been bubbling away all day, along with two tired children, had me hobbling back to the hotel less than halfway through the set.

Surely Disabled Access Platforms are now commonplace at music events? Well, there was one at On Blackheath. It was empty, carefully monitored by two security guards. In case the crutch wielding disabled woman tried to get in. Access denied. We had no wristbands. We were sent on a wild goose chase around the festival site, seeking that person with the Golden Access Wristbands and after missing some excellent bands playing to trying and failing to find someone in the know, I gave up and we stood.

Sunday was different. Frank Turner and The Sleeping Souls were playing. How could it be anything but fabulous? I decided to not stress about disabled access and enjoy my day, so helped by handfuls of opiates and my crutch, we braced ourselves for the crowds. Unlike my Beautiful Days Festival experience, which was amazing for disabled access , and the only time I have tried it since I fucked my back up, I felt like I should not have come to this music event. For, it was not really a festival. I felt unwelcome as a person with a disability.

Then an amazing thing happened. I got a Golden Wristband. We were in! I camped there for the rest of the day, mostly drinking overpriced red wine (medicinal), and R took the children off to have some fun in between some amazing bands playing.

As I watched the security guards continued to send clearly disabled people away from the mostly empty platform to get their very own Golden Tickets, I felt more anger and upset well up. Why was this platform so difficult for people to access? I looked around the festival to see more disabled people among the crowds and wondered if they knew this platform was available to them? Or maybe they already knew what I didn’t.

I spent the afternoon enjoying great bands while trying to not get cross at the noise pollution from other areas that constantly overshadowed the music. It was strange listening to Lindy Hop from a dance floor while Athlete played, and The Levellers were drowned out by dance music. Frank Turner was amazing. I expected no less. He played loudly and swore loudly, but yet still didn’t fully drown out the Big Blue Top in the background. But, bloody hell can that man sing, can that band play?! The children danced for me.

The platform was far from the main stage crowd, we were ostracised and segregated, far from the jumping, singing, amazing atmosphere of the excited crowd. We watched in the distance. We were there, yet not really part of it all.

I was cross and in my anger fired emails to various people. I was given platitudes and had smoke blown up my ass by the On Blackheath events organiser, until I refused to accept her disingenuous offerings and she became rude. I emailed Frank Turner, as he is an advocate of Disabled Access to Music. He replied and was very kind.  And I was reminded of the amazing support for disabled access to music out there that is promoted by Attitude is Everything. 

But, really, it was me that I was most angry with. It was harder than I expected. I’ve buried myself in my little cocoon and pretended things are no different before but they are. They really fucking are. I was cross with myself for thinking it would be the same as it once would have been.

All I wanted to do was Dance to my favourite music, to be in the crowd, not on a platform. I wanted to be dancing with the children on my shoulders, or swing them around to Beautiful Day sung by Imelda May and Four Simple Words by Frank himself. Instead I felt alienated, yet again a burden, a reminder that this fucking problem isn’t going away. It meant I couldn’t enjoy the weekend as I would have once done. I won’t be able to do that again.

I promise though, that for every upset, I will match it with a happy tale on the flip side of shit.

Autumn Equinox 23rd September 2014. More than just ‘Equal Night’.

Autumn - the colour of our marriage

Today is a special day. It’s the end of summer, today, night and day are of equal length, and from now on we will see the nights getting longer and the mornings getting colder – a chill in the air that means our toes linger out of the duvet a for few seconds before the rest of our body follows – the leaves are dancing and gliding from trees, full of colour – gold, copper, red – beautiful as they drift into the rivers and onto the grass.

R and I got married on the Autumn Equinox 7 years ago. Today is therefore the 7 year anniversary of our marriage. Copper is also the precious material to celebrate seven years of marriage, fitting as a beautiful autumnal colour. We got married in a cave, and danced outside on a farm on one of the last warm days of the year.

Happy Autumn Equinox.

“Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns.” — George Eliot

Still Here. Still Love Wine. The Sea. Music. Still Disabled.

I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.

But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.

I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.

I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.

They also love Frank Turner, internet shopping and Fly London boots.