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.

Earth Mother

At 3:58pm on 30th September 2013 a beautiful baby girl was born to an amazing woman and her husband. And I was part of the most magical experience I have ever been witness to outside of the birth of my own two children.

My best friend and her husband have tried for a long time to have a child; IVF was not successful, and for a while they thought it would never happen. But, it has! and I am so lucky to have been part of it. I was the hand-holder, the coffee-bringer, the encouragement as it all became so tiring she thought she could not carry on, and finally the additional leg holder as my strong and courageous friend pushed her baby into the hands of the midwife. I saw the baby’s head enter the world with the cord wrapped around her tiny neck three times, and watched with breath held fast as the midwife gently unwrapped it before the final pushes saw baby wriggle and yelp. I saw the absolute joy in the faces of mum and dad as they were told it was a girl, and as the father held his baby for the first time, grinning like his heart would break. As the baby needed some gentle encouragement to breathe, I was once again the hand holder as mum had the final less exciting aspects of birth dealt with. 

Mum to be worked so hard. She didn’t even realise how hard she worked. She thought she couldn’t do it. She didn’t believe that she was creating a miracle with each painful push, even though it felt like nothing was happening. 

Baby is beautiful; smooth skin, beautiful curled fingers, a good head of hair, wide alert eyes and a wonderful cry. Mother is tired, beyond words, and dad is pretty shattered too! I left them to be a family as grandparents arrived, proud to have been part of the circle of life and excited about being such an important part of this baby’s life.

Micro-Discectomy: 6 Weeks After

I am making steady progress recovering from my micro-discectomy, which took place 6 weeks ago now. The scar has healed well, I am mostly standing straighter and the sciatic pain in my left leg has continued to improve significantly. The decision not to decompress the right side of my L5/S1 lumbar disc has not gone unnoticed though; there is pain on my right side. I am at this stage unclear if this pain was always there but not noticeable due to extent of my left sided pain, or if this has increased. I personally feel like it has increased a little, and there has been the odd day where the progression of pain has followed a similar pattern as that of my left leg, but it’s not continuous so I shan’t complain (much). I have had a couple of frightening days, in particular one evening where my left leg started hurting in exactly the same way as it had on my bad days prior to the micro-disctectomy; my calf became sore, my ankle tightened and my foot went numb and fuzzy, my entire leg became weak, with my hip feeling like it would snap. An odd and altered sensation in my groin area meant I almost went to A&E and I felt scared it had prolapsed again. But, after about 2 hours of panic, and a reasonable sleep, it felt better in the morning.

My back still ‘pops’ though. I have had several horrible moments when I have bent over ever so slightly, reaching forward or something similar and found myself stuck, having to hold on to something to get myself straight again. I have had several scary moments when I have bent down using my legs to take the wait as I have been told to do, to find that my back has wobbled on the way down and I am stuck in that position. I have also had some frightening moments where my back has completely given way and I have found my legs having to collapse due to the pain and found myself stuck on the floor. In between these more serious moments (probably once a day) I am getting many times when my back ‘pops’, or grinds, I can feel something moving. I suspect this has always happened, but prior to my micro-discectomy, the movement of my vertebrae would result in my disc being pushed out more and hitting my sciatic nerve, with a cascading effect of inflammation, pain, and a period of bed rest. Now, I am just trying to ignore it.

I am disappointed to note that I do not get to see the neurosurgeon for 3 MONTHS! So, someone cuts open my spine, pulls and prods me around near my spinal cord and nerve bundles, closes me up, sends me home and I see no-one for 3 MONTHS! I had been told by the Registrar who discharged me that my neurosurgeon would see me in 6 weeks. My GP thought I would be seen in 6 weeks. Yet, having not received an appointment by 5 weeks, I have been informed by the appointments team and the Neurosurgeon‘s secretary (curtly) that 3 months unless there is a clinical need to see him earlier. My GP also said that he has received no report regarding my surgery and so, had I not shown him my lovely scar he would never have known! It’s a shame as my continued back going means that when I am on my own I have to continue taking my crutch in case I hit an uneven patch. I have to take it anywhere there might be uneven surface as anything other than flat office floors etc have my back collapsing. It’s annoying more than painful; although it is painful too, it’s still nothing compared to how much pain I was in before my micro-discectomy, due to sciatic pain.

Doing Nothing is a Skill

Doing nothing is a skill; one that I am really not so good at. I am not a very good patient while recovering from my microdiscectomy. I am not great at the art of staying in bed. I have done too much really and today I am suffering for it. To be honest I have had increased pain for a few days, having spent a lot of time outdoors on Sunday and getting up and down from the ground; I felt fine at the time, but not now! Since then, pain has crept back in and I am now left with nagging aching nerve pain down both legs but in particular my left leg. I also have some localised pain that reminds of how it felt as I came out of surgery, really internal. It also feels like it might ‘go’ again at any time and I have to remind myself that this part of my back pain, the misaligned vertebrae, that is not fixed.

I also need to remind myself that a microdiscectomy sounds like a simple surgical procedure but they did cut right down into my back to my spine, they did cut muscles, remove bone and push ligaments and my sciatic nerve away (maybe others too), and cut away the disc, leaving it ‘open'; it’s going to take time to heal! Yes! I was told this, I was told 4-6 weeks recovery, but, I felt so good in the first 10 days; I felt like the 4-6 weeks were cautionary and that I was recovering significantly faster than that! I even reduced my codeine as I didn’t need so much of it and for some of the day was managing fine with just paracetemol. I have read on some back pain specialist forums that increase in nerve pain around 2 weeks after microdiscectomy is normal as blood flows back to the nerve which has been restricted for a while; it’s also been irritated more by the surgeon, and allow for as long to recover as it was compressed for. So, I am not worried that the pain means something more sinister. I just feel rather daft for running before I could walk so to speak. I was thinking I would be ready to go for a swim on friday, I have been walking a lot and have started bending a little – I mean come on, R is doing a sterling job at looking after me, the children and trying to keep on top of our home, but he is no miracle worker and things on the floor are dangerous, and bloody annoying! – but, feel like I have taken a big step backwards so am slowing right back down again.

My advice for anyone having a microdiscectomy is – you WILL feel fabulous for the first week, you will feel like it has gone brilliantly and that means you are recovering quicker than everyone thought you would. Please slow it down, and remind yourself that your pain is not a guide right now, that reduced pain will make you think you can and therefore should be doing more. You used to be guided by your pain levels but now you have to tell yourself not to do something like picking washing up off the floor, pulling chairs out from the table. Please take it really, really slowly even if you feel ok, as a miscrodiscectomy is NOT a simple non-evasive procedure for you. It’s simple for the surgeon performing it, but it’s still major surgery for your back. You will just have to learn to read more books, watch more films, catch up on some fabulous blogs and Do Nothing!