Friday, 9 November 2012

Hemiplegia : The Unseen Effects.

Hello, 

Today I want to do a post discussing the unseen effects of the condition I was born with, left hemiplegia. Visibly, the physical symptoms of this condition are very obvious. The limp, the fact my left leg is shorter than my right, my left calf muscles are clearly smaller than my right. The foot drop I have. The swan neck deformities in my fingers, my bent elbow. However, my hemiplegia has a lot of non-physical symptoms, which another person can't see. Yet to me, these can be quite disabling, frustrating and difficult to live with. It was only after my own research, and talking to others that the link between them and hemiplegia became clear: so here goes:

Visual Perception Difficulties.

This one manifests itself in various ways. At school, whilst sitting for my GCSE's it became apparent that certain bits of maths were impossible for me. No matter how many times it was explained to me I couldn't do algebra, sequences, rotational symmetry. The way to describe it is that my brain can't process how to get from a to b, in solving these maths problems. It's like I just see the equations on the page and that's it. I didn't realise at the time, my hemiplegia was at the root of this. It was so incredibly frustrating, maths used to give me a big dose of anxiety. I was brilliant at the other stuff, I know my times tables off by heart etc. However, all was not lost, I managed to get a C at GCSE because I was stronger at the other stuff, thankfully. Researching hemiplegia as an adult I found out many people with it struggle with certain elements of maths. It was a relief, because it closed the door on a lot of frustration I'd felt for not being able to do something. 

My visual perception issues also have direct consequences for daily life too. I can't follow directions, or read maps. At all. My brain can't figure out how to translate the information on page to the real life setting. It means I can't go new places on my own because I would get lost and not be able to ask for help, since I would not understand what the directions were. 

Concentration and Attention Span.

I have a poor ability to concentrate on tasks and often find that my attention wonders. I have since learnt this is related to hemiplegia. Unsurprisingly, I found that it was most challenging whilst studying at university. In lectures I would find it hard to focus and having to concentrate on trying to make myself focus was exhausting. Also, sitting still for longer than ten minutes is very uncomfortable so I would constantly fidget and shift position during lectures to try and get comfy. It was very distracting. Strangely, I found doodling on paper would help me concentrate longer, maybe because it makes my brain focus on something. My short attention span would make writing essays hard and time consuming. However, I have found that setting myself small word targets seems to help focus my attention. 


Memory

I have an awesome long term memory. I can remember everyone's birthdays and important life dates. However, my short term memory is poor. I have read this has been implicated in left hemiplegia. I have to take someone else to important appointments as an extra pair of ears because I will forget information pretty much as soon I leave the room. 

Anxiety and Depression. 

If you're a regular reader of my blog, or follow me on twitter, you'll know I have both anxiety and depression. Anxiety has been ever present in my life for as long as I can remember. I always think worst case scenario, blow everything out of proportion and dwell on seemingly small things. I am also overly emotional, prone to extreme emotions.  Having spoke to other hemiplegics it seems anxiety is a common occurrence. Sometimes my anxiety is so bad that it very debilitating, and other times it is manageable. I'm learning the triggers of my anxiety and I'm actively trying to manage my stress better. I've accepted that anxiety is part of me, and that definitely helps. 

I also have depression, for which I'm receiving treatment, which thankfully is working. As this is a fairly new diagnosis, it's impossible to say if this will be a long term thing, or how it will affect my future. I find that it is best to be cognitively aware and to not bottle up my frustrations. Depression has also taught me to be nicer to myself, and ultimately to be more positive. I have been told by a psychiatrist that my hemiplegia makes me a high risk for these disorders. I have also read research suggesting a strong link between hemiplegia and subsequent mood disorders. If you have hemiplegia and mood disorders, please be reassured that you are not alone, and that you can be helped. 

I should also note that as a child with hemiplegia my behaviour was definitely affected. I was good as gold at primary school, but at home I had frequent temper tantrums. This persisted through primary school until I went to secondary. In hindsight, I believe this was linked to the fact I was frequently frustrated at primary as my hemiplegia was overlooked by teachers. (I was only under SEN and in receipt of a statement at secondary). I didn't feel confident asking for help when I clearly needed it and I'd take these frustrations home with me. I also think as a young child it's difficult to understand and accept cerebral palsy and why you're different to everyone else.  I was also bullied at primary school so it kind of makes sense now as to why I had bad behaviour. 

These are the unseen issues that affect me, it should be noted that there are a wealth of other unseen symptoms that may affect other people with hemiplegia. Luckily, Hemihelp has a vast array of information and fact sheets available discussing these additional problems. 

I feel that this blog post is important in highlighting the invisible effects of hemiplegia. It seems commonplace that the physical effects of hemiplegia take priority in treatment plans; the unseen effects are all to often overlooked or treated as an afterthought. I would like to see this trend change because these unseen effects can be difficult to manage without proper diagnosis and strategies to manage them more effectively. Indeed, I frequently see parents with hemiplegic kids, or adults with hemi talking about their unseen symptoms asking if they are linked with hemiplegia. Surely this indicates that there needs to be a shift in the way hemiplegia is viewed and talked about. Attitudes need to change so that the non physical effects are treated with just as much importance as the physical effects. 

Any questions, feel free to comment! 

Thanks for reading! 

Sunday, 21 October 2012

Book Wishlist

Reading is arguably one of my favourite things to do. For me, there is no greater pleasure than getting lost in a book. It's so relaxing, yet exciting all at the same time. My book wish list is growing at quite a pace. I'm pretty sure I have enough to carry me through until well into 2013.

Here are my most wanted books:


The Perks of Being a Wallflower - Stephen Chbosky. 


I saw this film in the cinema and thought it was amazing. Difficult subject, but it was uplifting and heart warming all the same. I find coming of age an interesting topic for novels because it's thought provoking and makes you think about your own experiences. 

We Need to Talk About Kevin - Lionel Shriver


I've heard many good things about the film, so as I usually find books better than the films, could be a promising read. I like the gritty and difficult topic of this book. It'll challenge you. 
Tipping The Velvet - Sarah Waters


A classic. I watched the drama version on the BBC a few years ago and fancy reading the book. 
Casual Vacancy - JK Rowling


 Just like everybody else my age JK Rowling was the mainstay of the literature I read as a child. Now as an adult, I'm keen to read some more of her work. Heard nothing but excellent reviews for this book. Can't wait! 

Divergent - Veronica Roth


I loved The Hunger Games Trilogy and this trilogy is similar in it's topic. 

The Fry Chronicles - Stephen Fry


I adore Stephen Fry. The man is a living legend and has an interesting life. Enough said. 

One Flew Over The Cuckoo's Nest - Ken Kesey


A book everybody should read in their lifetime. 

The Secret Life of Bees - Sue Monk Kidd

Lone Wolf - Jodi Picoult. 


I really like Jodi Picoult. Normally when I read I like it to be thought provoking and to leave a lasting impression on me long after I've finished reading them. Her books fulfil this criteria. This is her newest book. 

So, have you read any of these and loved or hated them? What's on your book wishlist? 

Thursday, 6 September 2012

Roasted tomato and basil soup recipe.

Today I'm going to share my roasted tomato and basil soup recipe, which I've made countless times. I think it's super tasty and is also really healthy. In fact, I'm currently on my Weight Watchers journey and this is free points which is lovely! 

Serves 4.

Ingredients.

12 ripe plum tomatoes, halved
1 red onion, peeled and roughly chopped
1 red pepper, deseeded and chopped
4 garlic cloves (leave unpeeled or they'll burn and go bitter in the oven)
1 tbsp olive oil
large handful of fresh basil leaves
salt and pepper.

1. Preheat oven to 150 fan. 
2. Chop up all your ingredients as specified. 
3. Place tomatoes, onions, pepper and garlic in an oven tray. Drizzle with olive oil and season with salt and pepper.
4. Roast on the middle shelf for around 20-25 minutes
5. Leave to cool. Peel garlic cloves. 
6. Add the vegetables (and all juices) to a blender, chuck in the basil.
7. Blend until smooth.
8. Check seasoning and the add to the pan to reheat when you're ready to serve. As with all soups don't boil when reheating. 

It really is as easy as that. I love it. It's a good soup for the change of seasons too. P.s. This soup is also vegan and vegetarian. 



Roasted veggies! The smell is divine.

My blended soup! 

Sunday, 19 August 2012

I'm Spazticus (WARNING - RANTING POST)

Right just a pre warning that this a bit of a rant.

Channel 4, I'm so very disappointed with you. After praising you on the fabulous job you've done so far on promoting the Paralympics you've left me with a bitter taste in my mouth. I'm of course referring to their new comedy show, apparently hilariously titled 'I'm Spazticus'. It's basically a hidden camera tv show where disabled actors play pranks on the public.

However, I'm not at all impressed with the down right offensive crassly named title. I've ranted on my Facebook and my Twitter but it wasn't cathartic enough so I've ended up writing here too. Now I like comedy, I love a laugh. However, I feel there is a line, and in this instance the line has been well and truly crossed.

Now in case you're not aware, 'spaz' is a term that is often used in the pejorative sense to mock someone. Similarly, the word 'spack' is also used interchangeably. Now the word stems from 'spasticity' which refers to unusual tightness of muscles. I have spastic hemiplegia cerebral palsy. Meaning the muscles on my left hand side of my body are affected by stiffness and tightness. So in essence, if you call someone a 'spaz' or 'spack' you are deeply offending people like me. 

I often challenge people when I see them using this word, and they reply it's just a word. It's not. Words have meaning and they are hurtful. I do not see why these words are so socially acceptable yet racist terms are so forbidden. It's double standards. I'm aware that this isn't just limited to disability, the word 'gay' is often used to describe something negatively.

Now, people defending the use of the title of this programme say that it's just comedy and that it's edgy. No, it's a cheap shot at people with cerebral palsy. When I hear someone use these words in real life, I freeze. I know I shouldn't take it to heart, but you do. It makes you wonder what people really think about disabled people. It also makes me worry that by using the word 'spaz' in their programme title it serves to normalize the word and before you know it it's bandied around feely again. I remember the uproar when C4 called a programme about dating with disability 'Undateables' there was a lot of uproar. In my opinion this is a hell of a lot worse. Kids with CP may have been taunted at school with this word (I was a few times) and to see it used as TV programme title is rubbing salt in the wound.

Anyway, I think I've rambled on enough.

Love,

Amy.

Saturday, 18 August 2012

Healthy Chicken Caesar salad - Recipe.


Hi! Today I'm going to blog my easy peasy take on a Chicken Caesar salad.  I am currently trying to shed some excess weight, as to put it bluntly, I've gotten fat. Luckily I have an amazing support network around me encouraging me on this journey. Anyway, I digress, for tea tonight I decided to do this recipe:

Serves 1. 

Ingredients.

1 Chicken breast
1 tbsp olive oil
1 piece stale white bread cut into cubes
1/2 bag rocket salad, washed
1/2 red onion, chopped
2 tbsp Morrison's low fat caesar salad dressing.
Few shavings Parmesan cheese/ low fat cheddar.

Method

1. Grill chicken breast until cooked through, shred and set aside.
2. Croutons: Heat olive oil in a frying pan and add the bread cubes.
3. Cook croutons until golden and toasted. Drain on kitchen paper.
4. On a plate, platasce the washed rocket salad, add the chicken and red onion, add the dressing and croutons. Top with the cheese!

EAT.


It really is that simple. I feel lazy blogging this aha. It's very tasty! 

Friday, 17 August 2012

A postcard from Bruges

Sorry for the cheesy title, but it had to be done, right? So I've decided to blog about myself and Adam's little holiday to Bruges. In short, it was amazing. 

We went down to London on the 20th July, and stayed over night in a hotel ready to catch the 07.58 Eurostar to Brussels. I thought it was rather cute that we got a continental breakfast included as part of our experience.Then, we caught our train from Brussels to Bruges. The journey here was about an hour or so. Luckily the cost of the journey was covered in the Eurostar ticket.

The hotel we chose to stay at was Hotel Navarra. I was enchanted by the fact it was a 16th century building. I also loved the fact it had a pool in the cellar and the central location. Our room was so spacious and the bed was huge so we were happy. We had breakfast included whilst we were there and there was such a variety. Needless to say, I ate possibly too many croissants. 



Adam outside hotel Navarra. 

We were lucky that Hotel Navarra was in such a central location, it was only a couple of streets away from the Main Square. This meant we could pop back and to as we pleased. Anyway, we were both in awe at how beautiful Bruges was. Every street, every corner, every building is truly medieval and is just spectacular. There are lots of places to explore. Also, as it's so small it's impossible to get lost. One of the best ways to explore is to take a boat on the canals that flow through Bruges. It saves tired legs and you really get to see a great deal of the city. The friendly Captain also gives a good running commentary of the history of Bruges and information on places of importance. It only costs 8 Euros too. There are also horse and carriage rides available if you'd prefer to travel that way. 





We mostly amused ourselves by being tourist geeks. There are plenty of museums to get an in depth look at the history of this gorgeous city. (charging 1 Euro entry for Under 25's). There are also lots of churches and a cathedral to visit. I love visiting old churches and religious buildings, as I find them really interesting. Also they were a welcome respite from the hot weather that we had. (We were both sun burnt) Arguably the most famous monument in Bruges is the Belfry tower, which dominates the skyline. If you're feeling brave you can climb up this huge tower. 


In a quaint tea shop: Victoria sponge.

Now, onto the most important subject... FOOD, Unsurprisingly we overindulged. Now, I'm going to be honest, if like me you only eat chicken/fish you're going to be limited on choice. I mostly had chicken and fries with a lovely creamy mushroom sauce, If you're a vegetarian there are basic options a lot of the time. And yes, it is true, Belgium does make gorgeously tasty chips and mayonnaise. The waffles are also amazing, I had mine with chocolate sauce and another lot glazed with sugar. You really must try some if you go. It's inspired me to buy a waffle iron ha. There are also hundreds of chocolate shops selling exquisite Belgian chocolates. Our favourite chocolate shop was Modeur Babolette. This was because they had great choice and seemed to offer great value for money. 


So to sum up, I would wholeheartedly recommend a trip to Bruges. I am absolutely in love with the place. I really must pay homage to the friendly locals, who are so polite, have an amazing grasp of English and can't do enough to help you out. It's great too, if like me you have mobility problems as it's largely flat to walk around and so small  that you can easily explore it all. I would quite happily visit this place again and again. I like to offer balanced reviews but I honestly don't have a negative word to say about Bruges. 

Much love,

Amy.



Monday, 30 July 2012

Hemiplegia and Mental Illness...

Hi, first off let me say a huge thank you to everyone who gave me amazingly supportive feedback on my blog post about hemiplegia. I was overwhelmed, and honestly never expected it. So, as you know I'm writing my thesis on the psychological impact of cerebral palsy, for which I'm doing a lot of background research. So I've been inspired to write about the link between my type of CP and mental illness. This is something which I have a wealth of experience on, so I figured I'd write a bit about it. 


Let me start off and say that if you're not already aware I have both depression and anxiety. The anxiety I've had ever since I can remember and my depression has come on more recently. I'm currently receiving treatment for the depression and it's helped me massively. The anxiety tends to wax and wane, depending on what is going on in my life. However, I'd say I do have an anxious disposition. 


So anyway, I did some research looking at how frequently mental illnesses, mainly mood disorders coexist with hemiplegia and the results blew me away. One study by Goodman (1996) found that in their sample of children with hemiplegia 61% had some form of psychological problem, which is huge. Let's not forget that this number may be under represented as not all people feel comfortable talking about their mental health. There's also been research showing that kids with hemiplegia tend to have higher rates of psychological problems compared to other kids with different types of CP, and also those who are similarly disabled but not by hemiplegia. This seems to suggest that there is also damage to the brain in the part controlling cognition and emotion as well as damage to the brain which results in hemiplegia. Of course, because mental illness is largely invisible and sometimes difficult to diagnose it is harder to establish the link and causality. Needless to say, I was shocked when I read this. A part of me was a little angry and relieved at the same time, because it would have helped if I'd known sooner that there was a convincing link between hemiplegia and mental illness.  If  the results are repeatedly replicated I'd say that mental health screening would be a good way to go. As well as publicising the link between hemiplegia and mental illness.


I do of course think that there are other reasons as to why mental illness seem to be more prevalent amongst the milder forms of cerebral palsy like hemiplegia. It's quite difficult to word this and get the tone right. In my experience, I've always been compared to able-bodied people. I went to mainstream school, I've done very well academically. Sometimes I've struggled to come to terms with having a disabled identity and the fact I do have limitations. Partly because, throughout my childhood I was like every other child. Ok, some things were difficult/impossible due to my hemiplegia but for the large part I was 'normal'. It's only as an adult, that I realised it was a struggle to keep up if you like. I hate to admit it, but my independence does have a limit. I'll always need help with certain things like tying shoe laces, with meal preparation, domestic chores,  I could go on. I've realised it's going to be tough out there in the workplace for a graduate, let alone one with a disability.  Due to fatigue, I've realised working part time is probably my most realistic option. I've realised that if I have children, I'll need a lot of help caring for them. If I learn to drive, I'll need an adapted car. So my disability does have a major impact on my life, however much I try to deny it. I'd be lying if I said this wasn't difficult to accept when I was in my teenage years. It can be quite anxiety provoking knowing that you rely on others for help, yet are expected to fit in and participate in the mainstream environment. 


I think my card has always been marked mental illness wise. My anxiety has always been with me. Even as a small child. I tend to be quite irrational and I do have a tendency to catastrophise and blow things out of proportion. My anxiety was probably at it's worst when I was around 16. My anxiety was centred around my health. I was constant convinced I had a serious illness. I get  frequent pain because of my hemiplegia and the muscle tightness it causes. I also get repetitive strain injury in my right hand frequently as it does so much more stuff than it probably should. At the time I didn't realise it was my hemiplegia causing such pain, I was googling my symptoms (never do this!) and getting horribly scary results. The doctor's didn't tell me it was my disability causing the pain but I figured it out for myself eventually. 


When I went to university I did have counselling to help me get to grips with my anxiety (CBT has stupidly long waits) I'd say it helped me understand why I have anxiety but long term it hasn't really helped. I have accepted now that I will always be vulnerable mentally. Like having hemiplegia, having a mental illness is a constant learning curve. I've been told that having hemiplegia does put me at increased risk of depression and anxiety because my brain is more sensitive to changes in brain chemistry. I suppose it makes sense. Having depression has took  me on a journey of self discovery and is teaching me life lessons. It's okay to ask for help if I'm struggling. There's really no shame in it. My self esteem took a bit of a battering thanks to depression. For a long time I thought my ambitions to be successful were unrealistic. Now I realise that's really not the case. 


I've also realised I don't always have to put on a brave face when it comes to my hemiplegia. Living with a long term condition can be tough and frustrating at times. You live with it day in ,day out, there's no respite. I've always felt there's something wrong about complaining about my hemiplegia and if it causes me pain. Purely because I used to get told 'there's always someone worse off than you" While yes I agree, saying things like that is wrong on the basis that it makes you feel guilty for how you feel and to dismiss real feel feelings as trivial and selfish is harmful long term. No-one is super human when it comes to dealing with their problems. 


Sorry if this seems an overly negative post. I just wanted to highlight that mental illness commonly co-exists with hemiplegia, and to explore the reasons why this may be the case. Of course, there's no shame in having a mental illness, they are extremely common and are treatable. I think exploring why mental illness appears to be so prevalent in hemiplegia cerebral palsy is important. I think in doing so, we can maybe tackle the causes and hopefully this may reduce. I am perfectly okay talking openly about my mental health. Mainly because I think it encourages me to be a more open person. Also because talking openly helps break down the stigma which wrongly surrounds mental illness, and it may help others. 


Thank you for reading,


Amy.


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