2 years.

 

Tomorrow, I will be 2 years post op from a spinal fusion for scoliosis.

I waited 2 years to have that surgery. It’s quite strange to now be 2 years on from it.

Prior to the surgery, I wore a back brace at ages 13-14. I was only meant to take 2 hours a day out of it. That meant wearing an ugly, heavy, constrictive lump of plastic to school and sleeping in it. I did ok with wearing it to school (thank god for polo shirts and blazers), but I never managed to learn to sleep in it.

It made me terribly unhappy, as it would most 13 year old girls. It’s a difficult age to start with. You’re meant to be forming your self concept, getting interested in looks and boys. Bracing makes that nigh on impossible.

So, oddly enough, that didn’t work out so well. It looked for a long time that I would escape needing surgery though. In fact, when I had just turned 17 I was told it looked like I would only need to be seen once more, as it appeared I was going to be ok.

On that once more appointment, I heard the total opposite. My curve had jumped from 35 degrees, to 45, and now one vertebrae was beginning to slide off of another. I had to have surgery, there was no choice anymore.

In some ways this made things easier. Previously it had been a case of ‘you might have it and wish you hadn’t. You might choose not to, and regret that in your 60’s’. That was a terrifying choice at 14, knowing that even the world experts didn’t know what to do.

In other ways though, it opened up a whole new load of fear. The week prior to finding out, I had been quite manic. The week I found out, I had already plunged into a fairly severe depression. From that point on my moods went totally haywire. It was these events that led to my eventual diagnosis of rapid cycling bipolar II.

This all happened in my A2 year. It is thanks to a very wonderful vice principal that I even got my A levels, as she ended up sorting out aggregate grades for me, after I had failed to attend an exam.

In the end however, the surgery got delayed as I had an infection and my surgeon refused to take the risk of it spreading to my spinal implants. This was for the best, as I would have become very, very unwell had I had surgery during 2008.

So, surgery ended up being the 14th September 2010, at 7am. Why anyone wants to get up to perform major surgery that early, I don’t know. I certainly didn’t! Thankfully I was given a nice dose of some benzos and calmed down enough to be literally wheeled down (the Royal National Orthopaedic Hospital is built along a slope, with the OR right at the bottom) to surgery. That was the strangest sensation.

Unfortunately I had severe issues with pain control after the surgery. I seem not to respond to natural opiates (nor ketamine) and spent a lot of time in a lot of pain. Normally, they get you walking after 2 or 3 days to prevent blood clots and sores. It took me nearly a week.

However, once I was up, I was up. It started with needing a shower after being quite ill. From that, I sat up for 12 hours straight, as I was so sick of lying in bed. The next day, I was taking my first tentative steps up and down the ward. A few days later, I walked back from my post op x-ray, which was a good 200 metres. After that, I basically spent as much time as I could moving.

The next big step was swimming. Pre-op, I managed to swim a mile in just under an hour. I was given permission to swim again on my month and a half post op appointment, and as soon as was possible, I was back in the pool. I did not however, swim anything like a mile. Instead, I found it difficult to even allow myself to fall back and float on my back. Over time though, I adjusted to the feeling of my new now rather rigid back in the water, and I can swim normally by now.

The restrictions post op were just not fun. No bend, no lift, no twist. It’s not a good moment when all of 3 weeks post op you realise you have just twisted 45 degrees round to pull a top on. I spent 6 months in a back brace. They got me up at 7am to get casted for it (another surreal experience) and then asked me to choose the colour I wanted it to be. Not what you want when you have to wear it for every day for the 6 half a year!

All in all, I am glad now that I did it, despite the way it aggravated my bipolar for a long time. It is really tough at first, but much like they said at the time, my spine is no longer in the front of my mind anymore. I have a slight restriction in my range of movement, but  it’s nothing I can’t work around. I can still dance, and swim, jump up and down (and believe me, I did so as soon as I was allowed on my one year post op date) and be as active as I please.

Images after the cut: Continue reading

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Channel 4 goes MAD

I was recently linked to this website by a friend. It’s a brief explanation of three common but misunderstood mental illnesses, funded by Mind and Rethink (two of my favourite charities within the UK).

It’s very much a simple overview, but I think it’s a good initiative. There really needs to be more discussion and awareness about these illnesses and I think this goes a long way to starting it.

Free time, finally!

I finally have time again to post here at long last. It’s been a busy couple of months. I’ve had to prepare for and sit my end of year exams. I haven’t got my results yet, I’m hoping I did alright. I’ve also moved into my new house in Cardiff, which is fantastic!

It’s really awesome being able to live with two close friends, rather than moving into a flat with total strangers. It’s also pretty nice to have a living room with a sofa. It’s ridiculous how much I missed that last year when I lived in halls. The only advantage halls had was that I had a bath. Now I only have a shower, so no more long relaxing soaks unfortunately.

Now that I have a lot more free time (i.e. too much), I should get round to making a lot more posts here. I have a series of photos from a walk I took around a local park, I shall have to post some of those soon.

The joys of housekeeping

I am by nature a fairly messy person. I grew up in a pretty small house, which inevitably was permanently cluttered – more so in recent years with four adults living in it rather than two adults, two kids. I like being surrounded by stuff, things, junk and items, minimalist designs always feel far too empty.

It’s only good up to a point though. One of the main outcomes of a bout of mood episodes is a very, very messy living space. Clothes on the floor, dishes on the surfaces, that level of mess. It becomes a rather vicious cycle; it’s (not so) surprisingly hard to feel good when your surroundings are so unpleasant, but the less good I feel the harder it is to sort it all out.

So, and apologies for the profanity, I have a feeling that http://unfuckyourhabitat.tumblr.com/ might just be fairly useful. I could do with no nonsense daily reminders to simply make my bed, and at least re-organise one area. Even more important is the focus on short bursts, rather than marathons. It’s good to be reassured that it’s ok not to be able to do it all in one massive go.

On monday I move into my new house that I’m renting with two friends. I’d rather not be ‘the messy one’, or at least, not by too much! Hopefully this’ll help with keeping on top of things right from the start.

Book update

Back in March I wrote about re-reading the Terry Pratchett series, Truckers, Diggers, and Wings in the hopes of kickstarting a bit more reading than I had been doing. It was a plan that worked rather well, the silliness was just what I needed at the time, and they were just as good as I remembered them!

Cover of "Fables Vol. 1: Legends in Exile...
Since then, my reading dropped off a little, so I decided that Sandman and Fables anthologies were the perfect antidote. The highly visual media and that all you have to read is dialogue for the most part makes them less of a challenge when concentration is lacking. It only gets better when the kick-ass character in Fables is Snow White (with Bigby a close second).

English: Belly Band of Norwegian Wood 1st edit...

I wish I’d had the chance to read this Norwegian Wood 1st edition written by Haruki Murakami! (Photo credit: Wikipedia)


After that, I decided it was time to bring out the big guns. Yup. A Murakami novel, the magical cure for all reading maladies. This time it was Norwegian Wood, his least surreal novel. I’m rather glad it’s not the novel I started with, though one could argue that Kafka on the Shore is hardly a normal story. However, whilst Kafka is unarguably more weird, Norwegian Wood is instead far more intense. It was a rather unusual reading experience in that watching the movie adaptation beforehand didn’t spoil the book, but rather enhanced it (though, of course your mileage may vary on that). In Norwegian Wood, Murakami tells the relatively straight forward story of a Japanese man in his 30’s recalling his life from late teens through to his mid twenties. It’s a fairly intense period for most people, one might feel, but for Watanabe it’s perhaps worse than most. Without wishing to reveal too much, the novel’s themes centre on love, mental illness, loss and the process of becoming an adult amidst all of this turmoil. For perhaps obvious, and some that are less so, reasons this story resonated with me to a great deal. Even if I never find time to revisit it, I can’t see the stories of Watanabe, Naoko, Midori, and Reikos’ leaving me anytime soon.

A Short History of Nearly Everything by Bill B...
Currently though, I am once again re-reading. This time it’s Bill Bryson’s A Short History of Nearly Everything. I first read this aged 14, just after my room had had to be evacuated due to massive amounts of rain and a leak in our roof. This would, of course, have been around the time I first became ill. I really enjoyed this book the first time I read it, sat in a room that for once looked spacious (it’s very small, and contains around 200 books when not evacuated), and that’s since become quite a fond memory. I don’t suppose I am the only one who knows how nice enjoying something again after a while of not being able to is.

After I’ve finished this, I have a fair few books I ought (never a good word in this context), to read. The Bell Jar (Sylvia Plath), On the Road, (Jack Kerouac), The Long Earth (Terry Pratchett and Stephen Baxter). I think I might remind myself to mix those up with some good old trusty re-reads. Sabriel has spent a long time now sat on my shelf.

Adventures in binding

For a long time, binding was something that didn’t overly interest me. I’d tried it a few times, once borrowing someone else’s just to try one. It resulted in a flat chest – and a lot of pain! To me, the payoff just wasn’t enough to tolerate that at all and I’m still in awe of all the people who have to bind that tightly to be read the way they need to be.

Lately though, I’ve been experimenting with slightly looser binding than that. Again, it’s something I’d tried before, but didn’t dare go ahead with at the time.

Now though, I feel a little more comfortable with doing so. Before anyone gets worried, I have a proper binder, I’m not doing anything stupid like using ACE bandages*. I’ve discovered that a top with inbuilt support underneath it gives good results without being quite so unbearable, which is nice.

So far, I’ve played around a little with different looks, such as boots, binder and a dress. That was a fun look, though at my height there’s a slight aspect of ‘boy in a dress’. Not quite what I was aiming for.

The best though was chino’s and a women’s top. All I need for that now is a good pair of shoes, something that might not be all too easy with how narrow my feet are. The mix of femme and masculinity was just very awesome and felt very right. I’ve always sort of struggled with looking good in a female way, it just never really suited me at all.

Unfortunately, now I have realised this, I will probably have a lot more desire to spend money on clothing, without having the money to do so. Such is the woes of being partly femme I suppose, one just can not resist wanting to look ones best.

Future ideas:

-boots, men’s shirt, tights, shorts.

– heels, chinos, dressy top/men’s shirt, blazer (more tailored with a men’s shirt)

– possibly boots, men’s shirt, and skirt at times.

 

 

* Please don’t bind with bandages, they will constrict as you wear them. This can lead to serious injuries.

A few thoughts

This diagram basically sums up studying for me, especially over the last term. It’s never good when trying to finish some coursework just feeds into an already dangerously low mood. If you stop, there’s all the guilt of giving up, but the more you try to work, the worse you feel for not being able to write anything of any worth.

My course has the handy situation of requesting a piece of coursework practically every single week- and this is only first year! Next year that’s only going to get a lot worse. It’s hard not to burn up with jealousy at the philosophy student with an essay every so often sometimes.

The only stage I can see the break the cycle, personally, is between missing work and stressing out. No one ever likes that I do this, but after a certain point, I just prioritise my health, and I refuse to feel guilty for making this decision.

Thankfully, after doing that last term, things have been arranged that my exams are in August. This means I have a lot of self teaching to do, but I’m finding actually I hugely prefer being able to work on what I want, when I want, just me, some paper, a textbook, a laptop for journal articles and some music.

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I told a couple more people about identifying outside of the gender binary recently. Both conversations were pretty awesome.

The first was with a guy whose attitude is if that’s how you identify, that’s cool. If you prefer a gender neutral name, then that’s what I’ll do. So much love ❤

The second was with a person who identifies basically the same way I do: a mix of both. That was pretty unexpected, but it was damn good to talk to someone who totally gets it. That there’s such a difference between ‘butch female’ or ‘femme-y trans-guy’ or ‘effeminate male’ or whatever and feeling androgynous, even if you can’t explain why that is.

—————-

I am really not sure how I am meant to fix my own sleeping pattern. It’d be very much appreciated if any doctor had any idea what the hell to do, or allow me to see a specialist in sleep so we can work out why I wake up the later it gets and feel tired in the morning.

All I know is that going to bed earlier does not mean sleeping earlier and staying up all night  and day results in 40 hours awake and a massive sleep where I wake up late afternoon/early evening.

Update.

I’ve been absent from here for far, far too long. 

I’m currently back at ‘home’ for now. That is to say, my parents home, the place where I grew up. I seem to spend about equal amounts of time here and in Cardiff now, which leaves neither quite feeling like home. Finally moved out of halls for good, which is nice. Also a little bit weird, but I’m looking forward to moving into a house so much. 

After an awful lot of deliberation, confusion and stress, my exams are now in August. It’s an absolute life saver, but now I have a hell of a lot of self motivated study to achieve. I’m sort of struggling a fair bit with that at the moment, largely because of my sleeping patterns. 

I do apologise for the lapse in posting, I shall endeavour to be more active in the future.