bad day

As I sit here typing this I can see the dull gloom of the sky outside, and the flickering light of candles on a desk. The landscape reflects my mood; the sun is absent, not even a patch of blue is to be seen and the sky is so overwhelmingly grey. Today is a grey day, and my mood seems similar. I feel dejected, stressed, tired and everything else that comes along with it. I’m at a stage where I’m really resenting things. I resent my body; I resent my body right now because I wake up in pain and I fall asleep in pain, it hurts to walk and it hurts to sit, and all the silly, mundane things that need doing in everyday life seem impossible and difficult. Washing my clothes is an ordeal, making my bed is a challenge, and cleaning the house leaves me in so much pain I can’t do anything for the remainder of the day. I feel hopeless. I feel ashamed of my body, and even more ashamed of the way it makes me feel. Today the pain in my body is taking it’s toll. I feel robbed of the opportunity to do things without having to think of their consequences. I am constantly weighing up the pros and cons of analgesia, knowing that either way I can’t win. Today I am realising that I struggle and it’s the struggle that’s the hardest to address. I am stubborn; but there’s only so much I can take on the bad days.

I’m hoping for a brighter tomorrow.

Things I’ve been reading (and loving)

This week marked the final semester of my undergraduate study at university. I find this simultaneously scary and exciting; it provides a glimpse into the real world, yet I still find myself amidst the safe perimeter of university life. Third year thus far has been enjoyable. I’m lucky to have taken some fantastic, thought provoking modules on my English Literature course. A highlight has been Post-9/11 Literatures of the U.S, which has enabled me to study a variety of post-9/11 texts alongside a variety of philosophical and political texts addressing 9/11 and the ‘War on Terror’ that followed. I have particularly enjoyed Don DeLillo’s Falling Man, a novel with an almost circular narrative, which explores the impact of the attacks using a plethora of characters and concepts. The final chapter is particularly hard-hitting, providing what one could mistakenly assume to be an accurate description of the very moment the plane hits the first of the towers to be attacked. Cormac McCarthy’s The Road, though perhaps not strictly a post-9/11 novel as it doesn’t address the attacks specifically, imagines and creates a post-apocalyptic American landscape where one assumes human conflict to be the contributing factor. It follows a nameless father and son, journeying down a road amidst the barren and desolate land. Save for a few precious relics of a life they once knew, the country is completely unrecognisable, and thus survival becomes increasingly difficult for the two. The narrative is littered with unimaginable horrors, yet the enduring love between father and son keeps them moving on the road. I was also introduced to  Jean Baudrillard’s  The Spirit of Terrorism, and Slavoj Žižek’s Welcome to the Desert of the Real. Each provided very interesting seminar discussion, and allowed us to analyse the novels on the module with alternative theories. Judith Butler’s Violence, Mourning, Politics further added to this, and much like Baudrillard’s and Žižek’s work, became a highlight of my studies on the module. We were also lucky enough to participate in a skype call with Alissa Torres, author of graphic novel American Widow. American Widow is an autobiographical work, documenting Alissa’s life before and after her husband’s death on 9/11. Intensely moving and in an unusual and interesting format, the book provides an alternative means of documenting the impact of 9/11 itself; something that has perhaps proved challenging to render into words. Below I will provide a list of texts I studied on the module. I recommend each and every one of them. Some address the attacks directly, whilst some provide an alternative critique of the occurence of 9/11 and the events that followed as a consequence.

The Submission, Amy Waldman

http://www.thesubmissionnovel.com/

http://www.theguardian.com/books/2011/aug/24/the-submission-amy-waldman-review

The Reluctant Fundamentalist, Mosin Hamid

http://www.theguardian.com/books/2007/mar/03/featuresreviews.guardianreview20

Extremely Loud and Incredibly Close, Jonathan Safran Foer

http://www.theguardian.com/books/2005/jun/04/featuresreviews.guardianreview22

The Road, Cormac McCarthy

The Road

http://www.theguardian.com/books/2006/nov/04/featuresreviews.guardianreview4

American Widow, Alissa Torres, drawn by Sungyoon Choi

Falling Man, Don DeLillo

http://www.theguardian.com/books/2007/may/26/fiction.dondelillo

The Mutants, Joyce Carol Oates (short story)

The Things they Left Behind, Stephen King (short story)

http://stephenking.com/library/short_story/things_they_left_behind_the.html

The Spirit of Terrorism, Jean Baudrillard

http://www.versobooks.com/books/1197-the-spirit-of-terrorism

Welcome to the Desert of the Real, Slavoj Žižek

http://www.versobooks.com/books/1137-welcome-to-the-desert-of-the-real

‘Violence, Mourning, Politics’, Judith Butler

http://www.theguardian.com/books/2004/jun/05/politics

Holy Terror, Terry Eagleton

http://www.theguardian.com/books/2007/dec/16/martinamis

Do share any thoughts you have, it’s really interesting to hear from you. I hope you have a fantastic weekend!

Heather

A Quick Update

As I write this it’s nearly 23.45 on a Sunday night, and whilst I’m having a break from essay writing I’d thought I’d provide a brief update. The past few weeks have been really, really hectic. I’m in my final year of undergraduate study at university, and though I do not think the work has necessarily become harder, I feel that there’s far more of it, resulting in later nights and earlier mornings. By the end of the next week I’ll have written close to 12,000 words, so I can’t wait to have a little break before resuming semester two. Studying with a chronic, long-term condition can be really very stressful, so I can’t wait to have a breather, take some analgesia and hopefully feel like myself again.

There’s LOADS of things I’d like to share on here, too. I’ve been lucky enough to have some great products that have really helped during this time. My dad knows how painful I find essay writing, and so he was kind enough to buy me a RelaxWell Dreamland throw which has become a new favourite of mine! I’ll let you know how I’ve been getting on with it.

I’ve also been slowly (yet surely) ploughing through my box of DeGusta goodies, and I’ll be able to update you on my progress with it. Food is definitely something I look forward to during an intensive assessment period, so it’s always wonderful to have a break, eat some really delicious food, and then have the energy to resume working. It almost makes the work bearable!

It is with regret I must finish this post and resume reading. I hope to update you all really soon, and look after yourselves until then.

Best wishes,

Heather

The Importance of Relaxation

I have to admit I’ve always been a stressed out, anxious person. It’s in my nature to worry about everything, and sometimes this worry is completely overwhelming and all-consuming. Coupled with chronic pain, my anxiety can spiral out of control. Being in pain almost constantly is physically exhausting, and can really affect you mentally. When I was younger I acted as if my cerebral palsy and Scheuermann’s didn’t exist. I think this was my ‘coping strategy’, but of course I wasn’t really coping with anything at all, I was just denying the existence of my medical conditions. Since moving to university I’ve recognised this, and during the past year or so I decided I needed to really work out a way of coping with the pain and stress that comes along with chronic medical conditions.

I cannot emphasise how extremely important it is to have rest days and to relax your body and mind if you’re dealing with a health condition such as cerebral palsy. Even if you’re not living with a chronic medical condition, you still need to give yourself time out to truly relax and to forget the worries in your life. When I was younger I thought it was perfectly fine to be completely wiped out from exhaustion after a day shopping, or to be in agonising pain after sitting to eat a meal in a restaurant. Yes, it’s normal for me to be in pain, but my body needs time to recuperate and get back to its normal self. There’s a few ways I do this, and I thought it would be a useful thing to share with you all.

Heat therapy is so relaxing. From a bubbly hot bath, to a hot water bottle and my trusty heat pad, heat therapy is soothing and relaxing for my body. I particularly like the homedics range and I own the shiatsu back massager, shiatsu neck massager and hand held massager with interchangable massaging heads. Below is a link to their products through boots: http://www.boots.com/en/Homedics/

I also love the heat packs that you heat in the microwave. I own a particularly cute one in the shape of a cuddly rabbit! These are relatively cheap compared to the homedics range, and can really help on sore days.

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Having hot baths with some pamper goodies can really help me out, too. The Body Shop stock some gorgeous products and you can always find lots of voucher and discount codes online if you type in ‘body shop codes’ into your search engine. Using high quality pamper goodies doesn’t always have to break the bank, so stock up if there’s a particularly good offer on. Recently my boyfriend purchased £40 worth of products for £20, which is an absolute bargain!

I also love candles. When I’m needing a rest day, I’ll get some reading together and spend the whole day in bed, taking painkillers as and when I need to. Putting a few candles on can really create a lovely soothing atmosphere. I also love my mooncandles, which are flameless and battery operated. You can change the colours of the ‘candles’ using the remote they come with, and they’re really very pretty. I purchased mine from Tesco. You can also purchase them online. I apologise for the picture, but it’s very difficult to capture just how pretty they are on camera!

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Having de-caffeinated drinks is a must when I’m feeling anxious or in a lot of pain. Though I thoroughly enjoy coffee and tea, I find herbal teas are particularly soothing on a stressful, painful day. I love Twinings Camomile and Honey, or the Twinings Peppermint Infusion. I was also introduced to Peanut Hottie at the Hull bloggers meet, and this is becoming a firm favourite. If you’re a fan of peanut butter, I suggest you give it a go!

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For my 21st birthday, I was spoilt rotten by all my wonderful family and friends. My boyfriend did make me a desk top zen garden as one of my gifts, and I’ve found it a really lovely way to relax. I wouldn’t say I’m particularly into the concept of zen or Buddhism, but raking the sand whilst stressed is a great way to relax yourself. Plus, it makes for a very unique object and you can create lovely works of ‘art’ in the sand with a mini rake. Zen gardens are available to purchase ready made online, however my boyfriend made this out of a photo frame. He glued the glass into the frame and turned the frame over. All he had to do then was buy the sand and objects to go into the zen garden, and he let me assemble it myself. It’s such a thoughtful gift, and it’s a true pleasure to own it. For secret Santa, my housemate thoughtfully bought me an oil burner with a selection of essential oils. This is such a fantastic gift for me and the essential oils create a soothing atmosphere in my room. Alongside my zen garden, it creates my very own relaxing space, and it’s really great!

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Buying a bouquet of flowers or a plant for my room instantly brightens up the place and so makes me feel more relaxed. I loved these gorgeous yellow roses. I arranged them in my marmite tea pot, and I thought they looked really lovely.

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I hope I’ve given you some inspiration. Hopefully in no time you’ll have a relaxing place of your very own!

All the best for the rest of the weekend,
Heather

Scheuermann’s Kyphosis: the basics

This is going to be a relatively short post as I have work to be doing and I’ve already been avoiding it all day so I need to get back to it as soon as I can! I think I’ve mentioned Scheuermann’s kyphosis briefly before, so I thought it’s probably time to quickly introduce it. When I was thirteen, I was diganosed with Scheuermann’s kyphosis. Scheuermann’s goes by many names, and sometimes it’s simply referred to as Scheuermann’s, sometimes kyphosis (or Scheuermann’s kyphosis) and often people also call it Scheuermann’s disease, but I prefer to avoid this if I can because a ‘disease’ implies that it is contagious, and this not at all the case! So, I’ll refer to it as Scheuermann’s, kyphosis, or if I’m feeling really fancy, I’ll use both words together.

I was told by my doctor that, in really basic terms, Scheuermann’s is where the vertebrae (the bones in my spine) developed differently. As a result, when the bones are ‘stacked’ on top of each other, they form a curvature in my upper spine. If you look at me sideways on, my back looks like an ‘S’. Now, I was always told that it was probably bad luck to have Scheuermann’s because no one actually knows what causes it. All I can tell you for certain is it’s not at all pleasant. It’s extremely painful, as my muscles around my spine (so the clever ones holding you upright) have to work really hard around my curvy spine.  So, as they’re working really hard, they can get very painful and ‘angry’ (perhaps I have a similiar reaction to hard work!) and thus I live with chronic back pain.

This year, I found out that spinal curvatures and cerebral palsy are linked, and so I think that my Scheuermann’s is due to having cerebral palsy. I can’t say for certain, but it seems rather likely. As well as pain in the thoracic (upper) part of my spine, my lumbar (lower spine curves inwards to compensate, and my cervical (neck) spine also curves to compensate. So as you can probably gather, I’m dealing with a lot of angry bones and muscles!

There’s no cure for Scheuermann’s, and my curve measures 70 degrees (or at least it did when I last had it measured). To put that into perspective, a healthy thoracic spine should measure between 25 and 40 degrees. So you could say I’m pretty ‘curvy’.

I did use a spinal brace at the age of 14, but I will be sure to blog about that experience separately. It was an experience to say the least. For now I manage my pain with various methods, including heat therapy, acupuncture, analgesia and gentle exercises. I do have ‘good’ days, and I do have ‘bad’ days, but that’s to be expected with a condition like this. Chronic pain is a really complex subject, and I don’t want to write about it here, but it’s something I live with everyday. For a brief glimpse into chronic pain, check out my earlier post here: https://nosuperhero.wordpress.com/2014/11/13/life-can-be-a-pain-sometimes/

So, that’s it! A speedy summary on Scheuermann’s kyphosis. I’m sure it’ll feature again shortly. For now though, I’m going to attempt to get back to my reading. Today Im reading When We Were Orphans by Kazuo Ishiguro. I haven’t quite finished it yet, but I’m enjoying it!

Until next time,

Heather

Life can be a pain, sometimes

I say this with all seriousness. Life can be a pain for anyone, of course. There’s the usual stressors of everyday life, sometimes there’s issues with friends and family, and sometimes there’s problems at work.

However, for some people, life isn’t just a pain: life can be painful, too.

Having Scheuermann’s disease and cerebral palsy means that I live with chronic pain. Though it is a common misconception, having chronic pain doesn’t necessarily mean the pain is severe; it simply means that the pain lasts for an extended period of time (the word chronic is derived from the Greek ‘chronos’, meaning ‘time’). So, to put this into perspective from my point of view, if I’m talking about my back pain, I haven’t been free from that for over seven years now. That’s right. Seven years of pain occurring pretty much every day. So what does this constant pain mean? How do people living with chronic pain cope? And finally, how does it affect the way I live my life?

I’ve always found it difficult to articulate what living with chronic pain feels like. I’d like to say that the expectation of having pain is a constant thought in the back of my mind. Pain is the last thing I feel at night, and the first thing I wake up to in the morning. Yes, it hurts, of course it does, but there’s ‘good’ days and ‘bad’ days. There’s days where the pain is barely noticeable, but there’s days where the pain is all consuming and it stops me doing normal things. I like to think of my pain as a Bunsen burner flame. Like my pain, the Bunsen is always on; but the flame burns more strongly when you add oxygen to it. Like the flame, when I do too much (just adding more oxygen to the Bunsen) I can exacerbate my pain levels, and the pain becomes ‘stronger’ or worsens.

Sometimes this happens without prior warning. I don’t necessarily have to have done anything in particular to exacerbate my pain, (this can be really frustrating) but there is usually a reason why. Silly, I know, but sitting for an extended period can exacerbate my pain levels, as can standing for too long. I’m constantly needing to strike the perfect balance. If I go for a long walk, I have to be prepared that I may be in more pain as a result, from both my Scheuermann’s (abnormal curvature in my thoracic spine; I’ll explain all in a later post!) and cerebral palsy. It’s a really odd thing to talk about, and it sounds so silly, but I’m constantly aware that each day will bring different levels of pain. Being in constant pain means there are things I cannot always do, though when I was younger I tried to ignore the fact I wasn’t necessarily able to do everything that I’d like to. Going to the cinema is pretty painful, and as much as I like going out to eat in a restaurant, the extended period of time sat down means that can become quite a painful experience. I’ve recently had to accept that going out clubbing isn’t really the best thing for me. Being on your feet all night coupled with the fact you’re constantly being pushed into by drunk dancers doesn’t make for comfortable entertainment! Studying for university can become difficult, but I’ve learnt to deal with it by constantly working and reading, so that if I need to take a day off then I can.

There are various ways I cope with my chronic pain, so I’ll try to list them;

1) take painkillers as and when I need them.
I’m prescribed quite a hefty amount of analgesia, but only take tablets when I feel I can’t cope. I’m often described as having my very own pharmacy in my room, and I can’t necessarily dispute that!

2) use heat pads/various other heated products
I have a heat pad that brings great relief when I’m struggling. It’s basically like a miniature electric blanket and you can adjust the heat setting. My dad bought mine from Boots and it was such a great buy!

3) learn to take it easy
This has been really difficult for me. I’m quite an anxious person naturally so I tend to want to rush so that I get everything done as quickly as I can. In light of this I’ve learnt to give myself a break when I need it. Living with constant pain can be extremely draining both physically and mentally, and I need some quality time to recuperate.

4) have the occasional glass of wine
I’m not saying this and justifying it, however I have found that if I’m not prepared to deal with the side effects of my medication when I’m really bad, (drowsiness, euphoria, itchiness) I’ll have a small glass of red wine maybe about once a week. I don’t drink a lot of it, but I do notice it definitely helps to relax my sore muscles.

5) be happy!
Though things can be difficult at times, I’m truly happy and extremely privileged to live the life that I live. I’ve had a lovely upbringing, been to school, achieved great grades and I’m now studying at university and I’m expecting to finish my final year in 2015. Trying to keep happy means I take time out to do things purely for the pleasure of doing things. I like to watch rubbish telly in bed, I like to have the odd takeaway and not feel bad about it, and I like to spend time with really supportive friends and family. I’m very lucky that the university I attend is really supportive and adjusts things as and when I need. They’re truly great and I know if I’m having a particularly painful day I can inform my department and know that there’s support there if I so need it.

Living with chronic pain does mean I’m constantly accounting for ‘bad’ days or ‘bad’ parts of days. I found a theory someone came up with to describe this, and they have described it so wonderfully I don’t think I could possibly add anything more to it. It’s called the ‘Spoon Theory’ and was created by Christine Miserandino. Click on the link below to find out more:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I’m aware that this has been a pretty long post, and if I’m honest I could add so much more to this and be writing for days. However, I don’t expect any of you would have the patience to read it (I know I wouldn’t!) So I’ll stop there for now.

Best wishes and I hope your week is going well!
Heather

Cerebral Palsy: what you need to know

When people hear that I have cerebral palsy, I (usually) get one of two responses. The first usually goes along the lines of, “wow, you’d never know, you look really well with it!” and the second is,”Cerebral palsy? I’ve heard of it, but I don’t know what it is”. Of course I’m speaking in very general terms, and it is worth mentioning that I am indeed conscious of the varying degree to which people are aware of the condition. However, I thought that it would be worthwhile to discuss the basics of cerebral palsy to further inform subsequent posts.

If we had never met before, and you were to come across me walking down the street, I’d be very impressed if you knew that there was anything ‘wrong’ with me at all. Whilst I hate using the words ‘normal’ (what constitutes normality, anyway?) ‘wrong’, and ‘different’, please bear with me! I’m hoping to make some sense to you all as it’s been a really long day! I physically don’t appear to be any different to the next person. I seem to walk perfectly normally, and appear fit and healthy. However, if you took a closer look, you might notice that I sometimes walk a little awkwardly on my right leg, and that I find my right hand a little awkward to use. So much so, I keep it tucked away in a pocket.

You see, I actually have a form of cerebral palsy called a right-sided hemiplegia. When I was born, I was premature and only weighed 2lb 11ozs. Being of low birth-weight can increase the risk of acquiring cerebral palsy, as does being part of a multiple birth, which I also was; I have a twin brother. Cerebral palsy is, in really basic terms, caused by an injury to the brain prior to, or fairly immediately after birth. I know when I was born my brain hadn’t fully developed on the left hand side, and though it did seem to recover and repair after my birth, it left me with the resulting cerebral palsy which affects (on a very basic level) my motor skills on the right hand side of my body.

When I was three I underwent an operation to ‘lengthen’ and stretch my right Achilles’ tendon. The form of cerebral palsy I have causes my muscles to be spastic, so that they’re always tight no matter when position they’re in. This operation enabled me to walk in the way that I do today, and for that I’m so grateful! I’ve also had lots of physiotherapy appointments, stretching plaster casts on my leg and, more recently, I’ve been using a splint to try to keep the muscles in my leg as stretched as possible. On painful or difficult days, I use a walking stick as I managed to find a rather pretty one. Or at least (I think) as pretty as a walking stick can be!

The main thing to note is that cerebral palsy doesn’t go away. There is no cure for cerebral palsy. And though my brain injury has already occurred, the affected muscles may continue to deteriorate over time through use and stress. My affected muscles can often become really painful because they’re constantly stiff and tight. I also have issues with my balance, with using my right hand, and my mobility, especially on ‘bad days’. There are so many other different symptoms associated with having cerebral palsy, and I’m aware of how long this post is becoming, so I’ll make sure to discuss them in other posts.

I’m sorry if this is rather dry and that this is possibly running the risk of being boring, but I felt like it was imperative for me to at least highlight the basics for you all! I hope you’ve had a wonderful week and I wish you an enjoyable weekend.

All for now,
Heather

And so it begins…

I’ve always been one of those people who have started writing a blog, enjoyed it, then somehow let living my life get in the way of writing it. It’s a similar scenario when it comes to keeping diaries; I say I’ll aim to write a wonderful account in it daily, but then I realise that 1) my life isn’t really hugely exciting, and 2) I find other things to do.

I have tried to fathom out an explanation for my lack of progress many times to no avail, because despite the enjoyment of the blogging itself, I came to the realisation that I’d become disheartened with the whole idea. I never began blogging with the expectation  that I’d draw in plenty of readers from across the globe, (though I did get a fair few followers,) but I just stopped believing that what I was writing was a worthwhile (or even enjoyable) read.

I think the problem was that there was no clear direction for my last blog. It had an incredibly ambiguous and vague direction. If I remember rightly, I labelled the page as a space to talk about my life, which is, in all honesty, nothing more than ordinary. I could probably sum up the generalities (and banalities) of my life in no more than four sentences. I’m no super hero.

What I did find useful and sometimes even therapeutic however, were certain posts I featured on my blog. I live with cerebral palsy, in the form of a mild right-sided, spastic hemiplegia.  I also live with an abnormal increased kyphosis in my thoracic spine, sometimes known as Scheuermann’s disease, which is probably caused by me having cerebral palsy to start off with. These are both life-long conditions. They’re not always easy to deal with. Pain forms a huge part of my everyday life, and coming to terms with my conditions has been an arduous, emotional process. Blogging about my medical conditions helped me to fathom out my feelings towards them, and allowed me to share information with the world that I didn’t usually discuss. It felt good to discuss my feelings surrounding the cerebral palsy, as it’s something people aren’t always aware that I live with, and most importantly for me, those posts provided me with a place where I could be honest with myself. It was hugely cathartic.

In light of this, I decided to start this blog specifically for talking about my disabilities. I hope it will be (at the very least) 1) informative, and 2) as cathartic as previous as attempts.  It would also be fantastic if my silly posts somehow managed to help others in my position, because I know having someone to relate to has made my coming to terms with things a whole lot easier. I’m not going to claim I’ll be updating this daily, because I don’t really know yet, but I will do my best to post whenever I can. It’s a start, and I promise I’ll try.

If you’ve managed to successfully navigate through my (often pointless) ramblings, I applaud you! Before I make this far longer than it has to be, I’ll stop myself right here.

Until next time,

Heather