Categories
Informative posts Things Cerebral Palsy and Scheuermann's Related

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:

The Spoon Theory written by Christine Miserandino

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

Categories
Informative posts Things Cerebral Palsy and Scheuermann's Related

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

Categories
My Life

follow me on bloglovin!

Follow my blog with Bloglovin

See my updates in your feed by clicking the above link!

Best wishes,
Heather

Categories
My Life Things Cerebral Palsy and Scheuermann's Related

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