Cerebral Palsy: some things to know

Hello there. I’m afraid this is only going to be a quick post because I’m currently wrapped up in a blanket trying to get pain/fatigue under control!

I currently volunteer for Scope on their online forum as a Community Champion, which is really lovely as I get to chat with a variety of people from a variety of backgrounds. Scope is one of the UK’s leading charities for supporting disabled people and their families, and their website and blog has a wealth of information about certain conditions and I thought it’d be great to share some information with you regarding cerebral palsy, which is often misunderstood.

You can find out more here.

Why not come and join in on our online community? We’re a lovely bunch, honestly!

Hope your Friday is going well,
Heather x

9th April, 2015

Hello there, you lovely reader. If you’ve been catching up with my blog this week you’ll have noticed that I’ve been doing ‘Happiness is…’ posts to try and get me to focus on the happy things in my day-to-day life. I think when you deal with anxiety & depression on a daily basis you really need a reminder of the good things. It’s all too easy to get stuck in that suffocating perpetual darkness. However I’m doing a slightly different post right now because today has been really difficult and I think talking through it might prove somewhat cathartic.

My anxiety today was really, really bad. You know when you can feel it coming, so you desperately attempt to suppress it but find out it’s going to burst through anyway? Yes? That was today. It all started with a few events from yesterday. Last night I burnt my wrist on my left hand. I am left-handed but I also have a mild form of spastic hemiplegia (a form of cerebral palsy) in my right side. The easiest way to describe this is as if it’s a stroke; it’s exactly the same kind of thing, but because the brain injury occurred before my birth, it’s classed as cerebral palsy. Because of this hemiplegia it’s difficult to use my right hand, arm, leg and foot so burning myself fairly badly on my good wrist was completely stupid and silly. Of course I didn’t do it on purpose, but I wish I’d have been a bit more careful. Sigh.

So this morning in the shower I had to dangle my burnt left wrist out of the cubicle, whilst I attempted to wash my hair etc. with my hemi hand. This proved difficult, so much so I gave up after trying to lather the shampoo in my hair for 15 mins. I rinsed myself as quickly as I could and got out. I was frustrated with it. Having hemiplegia is really annoying and I didn’t realise how much I rely on my left hand until today. It’s almost like there’s a loose connection in my right hand, because you know what you want your hand/leg to do but it isn’t quite doing it. It’s like there’s something missing, something absent, something wired incorrectly.

Because of this I think I felt a whole lot worse than usual. Additionally, I had a bad, anxious night last night. So I shouldn’t be surprised that today was terrible, but there you go. I headed out to get my burn looked at in the pharmacy, having done my make up nicely (or so I hoped). Things were relatively fine with the anxiety until I realised I’d been sold the wrong type of product for my burn. Then, I tried to apply the thing I’d bought to my burn with my hemi hand. Needless to say I couldn’t do this very well so gave up. This further added to my frustration and because my anxiety was bad anyway, it started to worsen as I left the pharmacy. I was focussed on getting home, but generally I was okay if not a little annoyed that the product was not what I had wanted despite having asked for it.

A minute or so down the road, a balloon popped in my left ear as I walked past a cafe. This proved to be the last straw.

If anyone knows anything about neurological disorders, you’d know they often come with a healthy heightened startle reflex. Basically I jump at a lot of noises people wouldn’t even bat an eyelid at. Balloons popping, fireworks, gunshot and other loud bangs are really bad and I jump very suddenly. I can’t help it; I can’t predict if or when it’s going to happen. Some days I’m worse than others. It makes your heart beat really fast, gives you a feeling of fear and panic and becomes unbearable. Anxiety makes this reaction even worse as I’ve found out. I started to panic, I was really fearful and upset and I just needed to get out of the situation. I started to cry, things had got too much and I didn’t know what to do. I was alone. I tried to ring Drew but there was no answer. I cried so much I could feel my mascara running into my eyes and down my cheeks. I know I must’ve looked an absolute mess.

I hurried home to get to a safe spac, when luckily Drew rang back. He calmed me down, and I managed to stop panicking. I couldn’t believe it. Why had this happened? With my counselling a regular thing, I thought I’d got past this stage. It wasn’t just embarrassing, but incredibly disappointing. I feel like I’ve taken one step forward and ten steps back.

So today has not at all been very happy. I did manage to get some reading done, however, so that was a bit of a relief. I just wish I could get over these situations and get on with living life, without having to worry about popping into a shop or bumping into someone or any other trivial, silly thing. I’m hoping that tomorrow I’ll have some happy things to share with you.

I’m sorry for my long, poorly-articulated rant. I’m currently in bed surrounded by soft toys and Chinese takeaway, so please do excuse me.
I hope your Thursday has been a little bit more positive. I’m hoping tomorrow will be a brighter day.

Heather

The Past Week

I just thought I would give you an update from the past week or so as things have been really hectic and it always feels great to write about everything. It’s definitely cathartic discussing things that have been an issue, and so this is probably going to take on a more personal tone.

It’s been a busy yet wonderful 7 days. Exactly a week ago, I found myself in a room packed full of wonderful blogging folk. We ate cakes, sipped tea, got to try out some brilliant new products and had a generally all round fantastic day. It was really fantastic to meet some new people, and though I’d class myself as a born-again newbie blogger, it was nice to feel somewhat integrated into a community of bloggers. I struck it lucky on the raffles and came home laden with goodies and treats; all of which are jotted down into my blogging schedule to appear over the course of the next seven days. I admit I’ve been somewhat hampered; I cannot seem to access my photos from my SD card, yet on my camera itself it is displaying all the pictures I’ve taken. This is really frustrating, as I had some great things to show you on there. Hopefully I’ll be able to work it out soon, or alternatively I’ll just take some more pictures on a different device and hope for the best! Either way, it’ll buy me a bit more time to really get great use out of the products and hopefully I can provide you with a really useful review of the day itself and the products.

Since it’s the run up to Christmas, there’s been some great events on. I’ve had lovely little nights in with friends, cosied up with a bottle of wine and some festive treats, chatting the night away. I’ve also consumed the obligatory festive mince pie and mulled wine, watched a fair few Christmas films snuggled up in bed with only the light of a candle, and everyday I’ve been eagerly opening each little window of my advent calendar with a small piece of chocolate as a reward for my efforts. This is such a wonderful time of the year and I’m really grateful to all the generous people who are sharing it with me.

University work is beginning to pile up, and this is starting to take it’s toll on me both physically and mentally. I thought I was getting over the last ‘bad pain’ phase, but I fear it’s only just beginning. The most frustrating thing about living with chronic pain isn’t necessarily the pain itself, but the things that come along with it. I am so, so tired recently. All I want to do is sleep and this is becoming a real issue for me. When there’s so much to do (volunteering, studying, essay writing) sleeping for 10-12 hours every night takes a massive chunk out of the day. Yes, I could take painkillers, but these make me sleep anyway, and without them there’s a chance I might feel well enough to power through. I am so excited to get home and to try and have as much of a break as possible. Admittedly this won’t be easy considering I have 11000 words worth of essays due in for January, but at least my family can look after me a little bit and take some of the stress away. Cooking is becoming a real chore, and this is really sad. Cooking is a great stress reliever for me, but feeling this exhausted means I don’t always enjoy it as it completely drains me of any energy. However, I’m hoping that over Christmas I’ll be able to get back into the swing of things. In doing so, I’m aiming to start posts including my favourite recipes and food products. I absolutely LOVE food, and I’d love to share any inspiration with you all as I know how tricky it can sometimes be to come up with something exciting and different whilst working/having a busy day. I love quick, easy to prepare meals, as they’re much easier for me to create when I’m having a bad day, so expect some of these in the near future!

This semester has made me realise I need to stop expecting so much from myself. I definitely need a good break and to look after myself a lot more. Sometimes you need things to go a bit haywire to put things into perspective, and I’m definitely looking at things through different eyes.

I hope you’re enjoying the run up to Christmas whatever you may be doing.

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