My obsession with audiobooks!

Hello lovely readers,
This is a bit of a random post of let's just go with it. I am going to be talking about my love of audiobooks.
I don't actually enjoy reading that much. I know you may be thinking 'no!' or 'why not?'  but it's better to be honest! Before you wonder, I DO read but mainly articles or non-fiction, I don't really like fiction. However, if I find a novel I like, I will read it like there is no tomorrow whether I'm in the bath, eating or just about to go to bed, I'll get through it in a few days and then probably read it a second time a few months later! I will start books but unless I actually enjoy it, I'll usually just stop when I realise that this book just isn't for me, in other words I won't just power on through and hope it gets better. So basically I am not an avid reader, I have read maybe two dozen actual long novels in my lifetime but the books I do read, I really enjoy.


Right, now I have explained why I don't tend to read novels I will get on and tell you about my love of audiobooks and how I came across them. At the moment, I tire easily and find it even harder to read after a long day, my brain just cannot process what my eyes are seeing so it is pretty pointless. For a lot of people, reading is what they do last thing before they go to sleep as a way to wind-down and relax. For me, I set up my sleep tracking app and my alarm, I then open 'audible' (which is an app for audiobooks) I select the book I would like to listen to, at the moment I am re-listening to Me Before You by Jojo Moyes, I put it on a sleep timer,  plug my phone into charge and place it  next to my pillow. I love listening to a book before I go to sleep because it means I can shift down in my bed, get comfy and just listen. I find this really calming. I don't just listen to audiobooks before I go to bed, I will sometimes put them on in the background whilst I get ready for the day or when I am tidying my room. I just find listening to books works better for me than reading them, especially now, because of my medication, I tend to be quite spacey.

The only downside of audiobooks is they tend to be almost double the price of paperbacks even when it is just a download and not a CD. I guess this is because they sell a lot less audiobooks than your average paperback. It is quite annoying though because at the moment, I've been getting through them so fast. But anyway.

I find audiobooks a great way to escape from everyday struggles and worries, just to be somewhere else in a different life for half an hour. This is the same for books and I have nothing against reading, it is just more difficult at the moment.

In other news, I have picked up my new pair of orthopaedic boots and insoles, my last pair were identical but sadly the soles started wearing through because of the way I walk but I have a new pair now so that's all good. My anti-epileptics are back up at top dose and I haven't had a 'large' seizure for almost three days so that's a small victory! I haven't heard anything about my inpatient EEG yet but it should be either this week or next.
I haven't been feeling brilliant for the past few days, I think I have some sort of bug therefore I'm sorry if this post isn't very good, I'm hopeful next week's one will be better but thank you for sticking with it!
I hope you have all had a good day.
Evie :) x

Oh the joys of hospital appointments!

Hello,
On Monday, I had an appointment in Southampton General Hospital with a specialist neurologist! We have been waiting for this appointment since June 2016 so it was kind of a big deal, not only to me but for my entire family and my doctors here in my local town.
I'll just run you through how the day went and what we did! We left our house just before 10am as it takes an hour and a half to get to Southampton from where we live. When we arrived, we did pretty much what we always do when I have an appointment in a city, of course we went to Ikea! I had a hotdog and a milkshake so life was pretty good. Aha. We had a quick look around and met this lovely family, whose daughter Joy, also was a wheelchair user and we had a brief but lovely chat about how Joy plays wheelchair basketball with Team GB and how she went to Rio 2016! Pretty amazing. Anyway, so we got talking and I told her I have played wheelchair basketball in the past but there aren't any clubs near me so it is a bit difficult, but when I used to, I absolutely loved it! We exchanged contact details and hopefully now I can persuade my parents to drive me to a club! If you are reading this Joy, it was lovely meeting you and your family and I hope we can stay in touch! I have now officially met two Paralympian's! Pretty cool.
We then headed for the hospital at around 12:50pm, my appointment was at 2pm, so we would have plenty of time to find where we were supposed to be and to park etc. I hadn't been to Southampton General for about three years so quite a lot had changed, they had refurbished the entrance, a few of the shops had changed but for me I still was really nervous, SGH has always in a way scared me. I think it's because I have had a few bad experiences there and it's so big and isn't familiar.

Me having a previous EEG!

We then found 'Children's Outpatients' and 'checked in' at the reception. I then had to do what you always have to do before appointments, I have got quite bored of this by now, being weighed and measured. I didn't mind this so much when I was little but all teenagers have some level of self-consciousness, including me, therefore even though I shouldn't, I find this slightly awkward and embarrassing. My parents and I then took a seat in the waiting room, which was so hot, I don't know whether any of you have noticed this but aren't hospitals always uncomfortably hot?!Aha. Anyway, we waited and as we waited the nerves grew and grew and grew until we were finally called in by the doctor.
I won't go into loads of detail because to be honest not much came out of it, most of the appointment was going through my medical history and so on because I had never met with this particular neurologist before. We were in the room for just over half an hour and the outcome was that he would up the dose of my anti-epileptics and refer me for yet another urgent EEG, I have had four since about July 2016 and this will be my second video telemetry. Basically, I will stay in hospital for up to five days, they will record my brain waves and heart rate but also video me 24/7 simultaneously. I have had one of these before in November 2016 and it wasn't the best experience, you aren't allowed out of your hospital room for the duration of the test which is VERY claustrophobic. Imagine, 5 days in one room with NO WIFI! How will I survive?! ;) Because the neurologist wants it to be done as soon as possible, I'll be likely to be admitted sometime over the next few weeks. Hopefully, once the results come back from this test, my condition will become clearer and the doctors should be able to give me and my family a  more certain diagnosis and further advice. Which will be great!
In other news, I am now doing four hours in school and three lessons. Every week, this will be upped so next week I'll be doing five hours and so on and so on until I am back full time which is going to be such a great feeling! It should take four weeks but it will be worth it. :)

I realise this post has been very medical but I hope it gives you an idea about what is going to be happening over the next few weeks to a month. I might not be able to post when I am in hospital but I'll try and write an interesting one about a topic which I am passionate about when I am in there as there won't be much else to do. Aha ;) and I'll post it when I come back home and back to civilization where there is wifi and a proper shower!

Thank you for reading,
Evie :) x

What is it like to have a friend with Cerebral Palsy?

Hello!

This post is slightly different as I haven't actually written it. About a week ago, I asked one of my close friends, Kate, to write a blog post about what it is like from her point of view to have a friend with Cerebral Palsy. I can't thank Kate enough for writing this because I feel it gives a view from an able-bodied person about having friendships with individuals who have disabilities. I have found it really interesting to read myself so I hope you enjoy it and it gives you an insight on what it really is like to have a friend with CP.

Kate and I have known each other since we were really little, however it has only been over the past two years or so that we have formed a friendship. My older sister, Grace, is friends with Kate and has been for many years, since they were about three I believe! Kate has really helped me both physically and emotionally through times which have been quite difficult over the past year or so. We have a very light hearted friendship and basically can just laugh at anything when we are together. Kate is 2 and a half years older than me, you may think it would be hard to form a friendship with an age gap however I find it really helpful because it means that I feel very safe when I am with her, in case I fall or have a seizure etc. This is because Kate is almost an adult and is more mature than me therefore with both that and also her frequent experiences with people with CP, I can really trust that if there were to be a problem, she wouldn't panic or get stressed but just deal with the situation in hand. Our friendship is like any other really, we just might face a few more challenges but I honestly believe, the laughs we have together are truly hilarious and we will remember them for years to come! Aha.

Anyway, I'll stop talking now and let you read what Kate has to say about having a friend with Cerebral Palsy, enjoy!
Evie :) x

'Hi everyone,
When I was asked to write this blog about what it's like to have a friend with Cerebral Palsy, my first reaction was "well it's just like any other friendship". However, in reflection, there is something special about a friendship with someone who has CP,  I will try to explain why.

I am in Year 13 in the 6th form. I myself do not have Cerebral Palsy, however I do have many close friends with the condition or a similar type of disability and have done so throughout my school life. It was in Year 1 when I was asked to take the new girl in my class who used a wheelchair to go and get the register. When I mistakingly pushed her straight into a towering wooden door and her chair tipped right over I felt like the most awful person alive, but when she burst out laughing and told me it was fine and she thought it was absolutely hilarious, I immediately felt at ease. It was at that moment that I made a very strong friendship with someone who I am still close friends with today. That day she put me at ease about disability by just having such a great reaction, she made me realise that disability was nothing to be worried about.

Kate                               Evie

Our trip to attempt ice-skating!

The first thing I would say about having a friend with CP is how rewarding it can be. Watching a friend achieve things they never thought possible and knowing you have helped them to do so is such an amazing feeling. My friends with CP have made me realise the important things in life, how lucky we all are and to be grateful for the smallest of things.

It is true that I have experienced a number of unsettling times with my friends with CP. Watching a friend have to go through life threatening surgery and seeing them come out with complications has been incredibly upsetting. Watching a friend be admitted to hospital numerous times as a result of having uncontrollable seizures or be suffering with uncontrollable pain is something no one wants to see anyone go through, let alone their close friends. However, it is these friends with CP that have to endure the most awful experiences that have the most positive outlook. They don't complain, instead they are grateful that it's not worse and get through it with admirable laughter.

This is the best thing about my friends with CP, the laughter. They will make everything laughable (this includes at the most inappropriate of times, ha!) When faced with the most frustrating circumstances such as not being able to access the one place you always wanted to go, ignorant people staring or falling over because of the disability, In any situation, laughter is always the first solution. A great example is when Evie and I were out in town when she first got her new self propelled manual wheelchair. We were in a shop talking to a friend and suddenly Evie's chair tipped backwards leaving her flat on the floor with her legs in the air. Her reaction: laughter, for at least five minutes both Evie and I were in hysterics, Evie on the floor and me sat next to her unable to function because we were so hysterical. The passers by looked horrified at the fact that a girl using a wheelchair was on the floor yet both her and her friend found it so ridiculously amusing, but we did not give a dam, that's why I love my friends with CP. It is the way they can turn circumstances that most would think to be awful into comical events. It takes a lot to be able to laugh at the situations which most people would break at, it is for this that I truly admire my friends with CP.

Having a friend with CP does mean that you may have to help with a few extra things that you perhaps wouldn't need to do for others. This can include helping to get things out a bag, pushing their wheelchair (if it's not electric), ensuring that where you are going out is accessible, scheduling in a few more coffee stops for rests. CP can also cause disorders that trigger seizures, for example Epilepsy. Knowing the signs of a seizure and what to do if one occurs can be helpful. For example, in the majority of cases, a person with Epilepsy is able to get up after having a seizure and carry on with their day, not all seizures require an ambulance. Although it might sound concerning the thought of a friend dropping to the floor, most people with Epilepsy can tell when they are about to have a seizure. Knowing what is normal for your friend and what to do if this occurs is the best way to ensure that you are confident going out and that you have the best possible time.  It is important to realise though that I have never found these adaptations to be any kind of a hinderance, it's just a case of being flexible, never has this prevented me from having a great time.

With CP you also learn that the smallest of things can be the biggest of achievements. Being seizure free for a number of consecutive days can be like the satisfaction of running a marathon. Remaining on two legs for a week (or remaining on four wheels in our case!) without unexpected meetings with the floor can be a huge success. They make you realise the important things in life.

The biggest respect I have for my friends with CP and the aspect that I love about them the most is the way that they are able to bring light to their disability through jokes. There's the jokes about the upsides of having a disability: When going to a concert you can guarantee the best seats and the most space, sitting up on a platform with huge amounts of space whilst looking down at everyone else who are barely able to move as it is so cramped, makes you feel like royalty. When visiting the theatre we have been greeted a number of times at the door by our own personal assistant for the evening, escorting us to our seats and bringing us our food and any merchandise meaning queuing is never an issue. Being the friend of someone with CP guarantees you a free carer ticket to the cinema, ice skating, theatre etc etc, halving the price  taken down of a trip out! Queuing at concerts is never a factor, as soon as you arrive you are straight into your seats, no endless waiting outside in the cold. The list goes on and on.

Then, there are the jokes about the encounters with ignorant people. There is always an encounter with some misinformed individual which can be extremely irritating, However, the laugh we have as a result of it makes it bearable. For example the random greetings from complete strangers, people saying hello just because the person is using a wheelchair. The guy at the cinema who assumed that because my friend was in a wheelchair that she would want a children's food box, we were seventeen! The passer by who assumed that my friend lived in a children's home because they used a wheelchair. The person in the shop who talked to my friend like a total idiot assuming that she was unable to talk at all because she was sat down! The way that my friends with CP are able to deal with these uneducated people in such a positive and humorous way is why I admire them the most.

My biggest message to everyone out there is that being friends with people who have disabilities is one of the biggest things that I am most pleased about. Without them I would not be who I am today and I strongly believe I would not have got where I am. They have made me appreciate so many aspects of life. Cerebral palsy is special, it creates amazing people and awesome friendships.

Thank you for reading,

Kate :)'

An old Facebook post of mine

Hello my lovely readers!

I thought I would share something with you, this is a Facebook post that a wrote about a year ago to try and express my thoughts and feelings about how some able-bodied people saw me and others with disabilities and to try and get those individuals to think differently next time. Here it is....

'I love how I never used to feel different, disabled or less able than others. People used to accept me just the way I was and didn't care about the way I looked. But now people are so judgemental about disability. People are worried about what their friends will say if they spend time with the 'disabled girl'. People do not want to be seen with me. Everybody has imperfections, I just think that people should get over what's on the outside and be friends with the person within... the body instead of just going by looks. I didn't decide to be disabled, it just happened. My body is like anyone else's, there is nothing wrong with my legs. They are completely normal. There is just a tiny bit of damage to my brain which means that it doesn't send signals to my muscles correctly causing me to look slightly 'different'. I wasn't even born disabled. It happened in the first few days of my life because I was born at 29 weeks and my brain couldn't cope. What a lot of people don't realise is my cerebral palsy affects everything I do from walking to writing and eating to sleeping. My disability affects my hands as well as my legs, this is why you will see my hands in fists when I'm tired. I've had to learn to accept that I'll always be disabled and that there is no cure or treatment which will change that. I am happy with who I am so why can't you be? I'm in pain 24/7, I fall a lot which is really scary for me because I can't stop it. It takes so much effort for me to walk even 10 steps. I have had to cope with all this and I don't want to have to endure people being horrible as well. Please can you be more considerate and see the person instead of the disability. Thank you :)'

I still completely believe in those words I wrote so long ago, everything I said then still applies now.

Thank you for reading and I hope you are having a good day.
Evie :) x

Common Stereotypes Surrounding Disability

Hello again,

In this post I thought I'd address the topic of common stereotypes that people with disabilities face. The reason I have decided to write about this topic is because many of the stereotypes surrounding disabilities are pure myths and have no truth to them at all therefore I would like help people understand what is it really like being a disabled person, instead of you just going on our stereotypes which are mainly very untruthful and old-fashioned.

A stereotype by definition is a widely held but fixed and oversimplified image or idea of a particular type of person or thing. For example, a stereotypical girl would like pink, have long hair and play with dolls and fairies. Common stereotypes surrounding disability include the inability to have a good quality of life, incapability and being introverted.

Many people who happen to have a disability live a very full and independent life. Yes, we may face struggles when trying to use public transport or getting into non-accessible buildings but those struggles, although sometimes extremely irritating, will make us stronger as a person. And yes, many people with additional needs will need support and specialised equipment to enable them to have a good quality of life but we do enjoy our lives, whether we manage to travel the world or just go out regularly into our local town, the majority of us will be able to live a happy and fulfilling life.

Because there are so many different types of disability, it is a difficult to tell how capable people with disabilities really are because it varies so much depending on the type of disability and the severity of the disability. For example, people with Cerebral Palsy, like myself, have different capabilities depending on the type of CP and how it affects you in your everyday life. For me, as I have a relatively mild form of CP, I see myself nearly as capable as an able bodied person however there is still a high risk of falling and with my new Epilepsy diagnosis, at the moment it is hard to go anywhere independently or with friends. If you have a severer form of CP then you may need the help of a carer or similar when performing tasks and going out and about. So you get the idea, everyone with a disability is unique, no two cases are the same therefore everyone has different capabilities, but please DO NOT assume that everyone with a disability is incapable because we just aren't, we have different capabilities but that does not mean in anyway that we are incapable.

The last common stereotype that I am going to address in this post is that all people with disabilities are introverted and reserved. I believe that this is one of the most important stereotypes that needs to be addressed and understood correctly. Yes, it is true that I am shy around new people and don't always immediately start up a conversation. Yet, I am a very loud and bubbly person once you get to know me. Therefore, yes I am probably more shy when I first meet people than I would be if I didn't have a disability but I am definitely not introverted. I really love going out and meeting friends but unfortunately, because of my disability, even if I ask twenty people to meet up nearly all of them will say they can't and I believe the majority of them don't want to spend time with me because of my disability. Whether it is because they feel nervous in case I fall or have a seizure, which I completely understand, or maybe it's because they don't want to be seen around a 'disabled' person. The fact is that many disabled people want to go out but because many able-bodied people are inconsiderate and don't realise that we are just the same as everyone else, yes we may face different struggles but at the end of the day, WE ARE THE SAME AND WANT TO JUST BE ACCEPTED INTO SOCIETY. Another reason it is hard for people with a disability to access opportunities that are open to able bodied people is accessibility to buildings, theme parks, hotels etc. I believe that everywhere should be made accessible to EVERYONE. Many places are just not accessible whether it is because they don't have accessible toilets or because they have stairs but no lift. This is just unfair and means that simply we can't go to as many places as we want and should be allowed to go.

Thank you for reading and I hope I have changed some views about disability.

Evie :) x 

Seizure recovery

Hello!

Today I thought I would let you know what I do personally to recover from a seizure big or small. After any seizure it takes a certain amount of time to recover whether it's 5 minutes or 3 days. Sometimes it can take weeks to recover completely from large cluster seizures.
Usually, after a seizure I am confused and drowsy therefore my parents help me up to bed, my walking is often very affected after a seizure, and I tend to sleep for an hour or two. When, I have absence seizures or myoclonic jerks I can continue with whatever task I was doing before the seizure occurred.
After a 'larger' seizure, my CP becomes more visible for the days or even the weeks afterwards. When I say more visible, I mean I may drag my feet more and I will generally have more spasticity therefore my arms and hands may be more affected than they usually are. When this happens, I struggle writing even a single sentence, I get tired very easily and I have to really concentrate in order to make my feet clear the floor.
What I am trying to say is after a seizure you need to take time to recover and recuperate. Give yourself some TLC. If you rush back into normal, busy everyday life then you will probably end up pushing yourself too hard which will result in an increase in seizures, then you'll be back to square one. So just rest and take all the time you need to feel better and get back to the usual you!

I realise most of my blog posts are based around my own medical experiences and are probably relatively boring half the time! Therefore, if you have any ideas for future posts then please do get in touch:
Email~ livingwithcerebralpalsyevie@outlook.com
Facebook Messenger- Eve Osborne
Instagram Direct Message~ @livingwithcerebralpalsyevie
Or if you're on a PC or laptop then over to your right you will see a contact form where you can leave a message and I'll get back to you ASAP!

Any feedback about my posts or blog in general will also be gratefully appreciated!

Evie :) x

Ten top tips for a relaxing school night!

Hello,
I tend to start to wind down relatively early in order to have relaxed and stress free week day evening. Here are my top tips:

1. Lay your clothes/school uniform out the night before, this saves a lot of hassle in the morning, you won't have to go through your drawers and spend hours deciding what to wear!

2. Cleanse your face and brush your teeth early before you get too tired: this is especially important for people who get tired easily like my fellow Cerebral Palsy readers.

3. Tidy your room before you go to sleep, for me personally I find it nice to go to sleep in a tidy room. I also find the process of tidying very therapeutic.

4. Light a candle or listen to relaxing music, both of these are very calming.

5. Do mindfulness. Whether this is colouring, simple yoga or focusing on your breathing for a minute or two, this is a very good way just to relieve the stresses of the day and have a period of peace and reflection.

6. Turn off your phone for a while before you go to sleep, have a break from social media and just focus on you for a moment or two.

7. Don't stress about school or the homework you haven't done just try to let everything go and have a peaceful night sleep with no worries.

8. Read or listen to an audiobook before you go to sleep, this allows you to live another life even if it is just for half an hour, it allows you to forget any worries you may have and just enjoy a story.

9. Don't go to bed too late, try and let your thoughts go and just close your eyes and drift off.

10. Sleep with one pillow and shift down in your bed so you are lying completing flat, I have found this so much more comfy and I feel I have better night rest when I do this.

So there you go, my ten top tips for a good nights rest and a relaxing weekday evening. I hope you have enjoyed reading this and if any of my advice has helped you please do let me know. As I keep saying, I would love some feedback about my posts and blog so don't be afraid to email, Facebook message or just fill in the contact form to your right, if you are using a mobile device scroll down to the bottom of the page and click view web version. Once again thank you for reading and I look forward to hopefully hearing from a few of you soon!

Evie :) xx

This world is amazing! A post about positive thinking.

Hello!

Today I thought I'd write about all the positives in life and why this world is so amazing.

I have been having a very up and down couple of months and I do get really frustrated sometimes. I don't understand why I have been given this particular life, why I have brain damage and why I can't  just  be like everyone else. However, I have periods where I feel really positive and realise that my disability and struggles have made me me! Although it can be tough sometimes, I have a lovely family supporting me, a beautiful bedroom which I have made my own, amazing friends who do not care about my disability but just accept me for who I am and love me for that and I am so lucky to have them. THANK YOU. Moreover, we are all so lucky to have this absolutely incredible world that is just waiting to be explored.
So, I know I may sound very cliché but the message I am trying to convey is that even though we have struggles in our lives that may feel unbearable at the time, we can overcome them and move on to enjoy the world with all its beauty.
For example, at the moment I am not able to do some of things that I would love to be doing because of my seizures not being under control. I am not able to explore our world how I would like but this is just a bump in the road, there will be much brighter times to come. In a few months I hope I'll be able to achieve small goals that mean so much to me such as going to school full time, meeting up with friends independently and to be able to go swimming! These may not seem that important or critical for happiness but for me this is all I want to do, I just want to get some of my life back!
When I am older, I want to travel and explore this beautiful world we live in and maybe this won't be possible but it is important to stay positive and just have hope.

I am lucky and yes at the moment it may be hard to realise this but I will get through this and I'll be stronger and more resilient because of it.

Thank you for reading and I hope you can take a moment to think positively and just love life!

Evie :) xx 

Epilepsy

Hello everyone!


Today I thought I'd write about my Epilepsy.


I was diagnosed with Epilepsy on 2nd December 2016 after having seizures since May 2016. I have been diagnosed with myoclonic jerks, absence seizures, epileptic spasms and secondary generalised seizures. When I was diagnosed, my doctor said there was pretty much no doubt about it, I have Epilepsy. However, now they cannot seem to make their minds up whether it is all epileptic or not therefore I am obviously quite frustrated.
I am on AEDs (anti-epileptic drugs). I take Keppra (1000mg) twice daily. I also take Clonazepam (1.5mg) at night. On top on my Baclofen which I have been on for years (80mg per day) and painkillers (Codeine or Paracetamol), I take on average 25 pills a day and I am fifteen! So all the AEDs have side effects, basically 50% of the time I am quite out of it and the other 50% I am just really tired! I also cannot seem to concentrate very well or recall memories (maths lessons are a total nightmare!).
So, you get the idea. These few months have probably been some of toughest I have had in my lifetime. I have seizures most days and to be honest I am so tired I feel like I need to sleep for a day after each one of them so not only are the drugs making me tired so are the seizures. Basically, I am like a toddler, if I don't have a nap then I cannot function.
These seizures are also really disruptive and to be honest painful (I have never had bruises like seizure related ones!). I just really hope the doctors, my family and I can find a way to stop my brain from constantly miss behaving!
If you didn't know, because of my CP, I am 40% more likely to have Epilepsy as I have a small bit of brain damage and in my case, this brain damage is causing seizures.
To anyone in my classes or my friends at school, this is the reason I haven't been able to come in very much recently and if you see me leaving the room in a quick manner then it is probably because I have had a warning sign that I am about to have a seizure and need to get out of the classroom and into the corridor or similar and get down on the floor. To all my friends, thank you for bearing with me, supporting me and generally being there for me, I REALLY appreciate it so THANK YOU.


So this is it, all about my Epilepsy!
If you have any questions or things you would like to let me know then please fill in the contact form to your right or drop me an email: livingwithcerebralpalsyevie@outlook.com  
I'd love to hear from you! :)


Thank you all so much for reading and I hope you are having a great day.


Evie :) xx